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Last updated 8 months ago on 16/08/2024.

Contrary to most social media platforms, newest entries are at the bottom of the page so you don't have to keep scrolling around all over the place!

 

Rib Pain

29^th November 2018 - 6 years ago

About 10 days before running the 7.5 mile Cockington Christmas Caper 2018 with a couple of friends I broke or bruised a rib - not an uncommon occurrence for me, but the first time it had ever happened without an impact during sporting activity - I was sitting at my desk at the time.

Following this, the same rib cracked or was injured again with moderate use, for example when playing 10 pin bowling.

I then found that other ribs were getting bruised easily with only slight impacts or lifting things that I would not normally consider heavy. The pains moved around quite a bit and took a few days or couple of weeks to get better.

 

Skiing in the Czech Republic

20^th January 2019 - 6 years ago - 27^th January 2019

In late January, still believing I was just suffering with a slow-to-heal cracked rib, I travelled to the Czech Republic to go skiing with my sister, brother-in-law and their 2 daughters. We had an amazing week in the beautiful mountains. I found it difficult to stand up again when falling over on skis due to my sore rib, so after falling a dozen times decided to get the hang of skiing and enjoyed it much more!




There was a dedicated 2-mile sledge run down one of the mountains which we zoomed down a couple of times, enjoying the snow-covered forest.

After all this activity I was in a lot of pain, I could barely get out of bed in the mornings, having to roll onto the floor first before being able to stand up, and finding it difficult to move around in a normal fashion.



My sister, Helen, has recently started running and was very keen for me to join her for the 5km Kalisz parkrun, having run the Parke parkrun and Torbay Velopark parkrun with me in 2018.

I could barely get out of bed or walk, but was keen to complete a parkrun overseas, so we set off in the snow at -3°C along the river with 46 others. I was a bit of a novelty for them, not because I was the only non-Polish runner, but the only one in shorts! I did keep my jumper on as it was flipping freezing!

To round the day off I went swimming in the aqua park with my nieces and Przem, then ice skating in the evening. A great day but not exactly taking it easy!

 

Cheryl's birthday in Spain

17^th February 2019 - 6 years ago

Cheryl and I had a lovely few days 50 miles inland from Valencia in Spain in a very quiet and rather strange little town called Anna. They have a 3-day festival to celebrate Valentine's day which involved young men dressed rather aggressively in Spanish flags, combats and with their faces painted bright blue chasing younger children around the streets trying to hit them with branches cut from trees. All this was followed by a rather informal marching band. This took a couple of hours each evening and culminated directly below the window of our apartment in a celebration with strange dancing, a human pyramid and much flag waving and shouting. All good fun, if a little hard to understand. The last night all the young men jumped in the open-air, river-fed stone laundry which is still in use in the town, then their mums turned up to give them a towel and walk them home!



We weren't too active so my pains were OK, a bit sore at night. My lower back was a bit painful after sliding off of a very popular climbing structure made (very much larger than life) like the giant from Gulliver's Travels. Again, I had no idea that my bones were being affected by a disease at this stage.

 

Diagnosis

8^th March 2019 - 6 years ago

On returning to the UK in February the pains gradually improved, but over the next few weeks I had 3 or 4 incidents where a light impact or picking up something a bit heavy (e.g. a small child) was resulting in bad pain in my ribs and back.

I went to the doctors and was told that it all sounded normal and to rest, he said I could have an x-ray but 'why would you subject yourself to the radiation?' The following week I returned and saw my own GP who again thought it sounded normal and didn't do a physical examination as 'others have done one'. I had been for an x-ray but this didn't show anything up. I pushed her to investigate further and she sent me for a blood test to check for low calcium levels which could indicate osteoporosis (a weakness of the bones). The receptionist phoned the next day saying I had a low white cell count and a high protein count. Combined with the rib pain, Dr Google informed us that I had myeloma, this was as good as confirmed by my GP over the phone a few days later and I was put on the cancer referral list at Torbay Hospital.

On the 19^th March 2019 I had an appointment with the haematology department at Torbay Hospital and was diagnosed with myeloma, they arranged some tests to confirm this.

Myeloma, also known as multiple myeloma, is a blood cancer arising from plasma cells. All the information you need about myeloma is on the Myeloma UK website.

Whilst the symptoms of myeloma can be effectively treated, the cancer cannot currently be cured. The aim of treatment is to improve the quality of life and prolong periods of remission when the myeloma is inactive.

It was a huge shock to learn that I have cancer. The next couple of weeks were very difficult, trying to come to terms with having a life threatening disease and having so much to learn and understand. As I write this at the end of April, it still hasn't fully sunk in.

More information: www.myeloma.org.uk

 

Tests

25^th March 2019 - 6 years ago

After seeing the consultant in mid-March I immediately had a bone marrow biopsy. They say this is 'uncomfortable' rather than 'painful', but I'd say it was a good combination of both! This showed that 70% of my bone marrow is plasma cells, a clear indication of myeloma as normally plasma would only make up around 5% of bone marrow.

We then went down to Derriford hospital in Plymouth for a PET CT scan - that's a scan in the CT doughnut after being injected with a low-dose radioactive tracer. This again clearly showed the presence of myeloma throughout all my marrow-containing bones, including my ribs, spine, hips and long leg and arm bones.

 

CentreParcs and Longleat with the girls

5^th April 2019 - 6 years ago

Around 6 months ago we'd invited our eldest niece, Elize, and our very good friend’s girls who we've looked after 2-3 times a week for the last 9 years, Esther & Heidi, to go away for a long weekend to CentreParcs and Longleat safari park. We'd all been super-excited about this trip and really didn't want to let the girls down by cancelling it.

My back was very delicate, so Cheryl did all the driving, the girls helped with packing and unpacking the car and around the lodge for dinners etc.

We all had a great time exploring the forest site and loved staying in the lodge, going on boat trips on the lake, ten-pin bowling (not for me this time!) and time in the pool complex (I fancied the rapids but spent most of my time in the jacuzzi!)

The giraffes and monkeys at Longleat were amazing, so good to get so close to them.

It was good for Cheryl & I to take our minds of off the diagnosis and enjoy time having fun and relaxing. My treatment started the day after we got back.

 

Treatment - phase 1

9^th April 2019 - 6 years ago

I have been very impressed with the haematology department and all the staff on the Ricky Grant and Turner cancer wards at Torbay hospital, they have started the treatment very quickly and have spent a lot of time with me discussing my condition and how the treatment can help.

The plan is that I will have 4 consecutive 3-week cycles of a novel chemotherapy known as VTD followed by a 3-week stay in Torbay hospital to receive a high dose of chemotherapy and an infusion of my own blood stem cells (taken a few days before in Derriford hospital). This second phase completely wipes out my bone marrow (hence the stay in hospital as I'll have no immune system), which then re-establishes itself with the healthy stem cells and is followed by a few months of recovery.

The chemo itself involves an injection on certain days and lots of tablets, up to 10 different medicines per day aside from the pain relief. It's all set out in a diary as it varies from day-to-day and week-to-week. Since I've never swallowed a whole tablet in my life, the new regime is a bit daunting. I'm finding a nurse friend's advice invaluable in taking the tablets with some thick yoghurt.

I'm writing this in early May as I am a week into the second round of the first stage of treatment.

The first 2 weeks were very difficult as I was in a fair bit of general pain in my spine and ribs but also having 2 - 5 incidents a day of strong pain in my back and sternum which were causing me to cry out in pain and 3 times led me to fall to my knees. My mobility was badly affected, it was impossible for me to move around when lying in bed and taking up to an hour to roll out of bed in the morning. I lost all confidence in walking around the house and didn't go outside for 5 days. Travelling by car was also painful due to jolting my back - Cheryl has adopted a lovely smooth driving technique and tries to avoid the many pot-holes and bumps.

The hospital advised taking more pain medication and prescribed me some liquid morphine which helps a little. We had a visit from the Rowcroft community team who advised using a slow-release morphine patch as well.

 

Support, supper and sitters

15^th April 2019 - 6 years ago

When we initially told friends and family about my condition many of them (many of you!) offered practical support to us, but we didn't really know what to ask for. However, as my mobility, sleep and fatigue all became issues that took a lot of time to manage, along with the medicine regime, we realised that we were really struggling to keep on top of a normal day's tasks.

Cheryl has been doing a fantastic job of looking after my physical needs and has also had to take on the tasks that I would normally perform; preparing breakfast each morning, talking the bins out, doing the vacuuming etc. as well as my share of cooking and washing up. Her sleep is broken by my need to move around in the night to ease my discomfort, so she has been very tired. It's also the busiest time of year in the cricket shop so Cheryl's trying to get in for at least a couple of days a week to help out there. We've got a rota of Rich-sitters who have come over to make sure that I'm OK whilst Cheryl's at work, this has been very helpful and much appreciated.

This next sentence is very sexist - you have been warned!

We very gratefully accepted offers of cooked meals (and cake!) from some lovely ladies and asked some masculine men with a range of tool-boxes in line with their manliness to put up some bars and rails on the landing to enable me to move around more safely.

It has been so encouraging to be able to call on people for these practical matters, as well as to join together in conversation, empathy, prayer, advice and, on occasion at least, laughter.

David Goddard arranged a prayer meeting to which many friends from KCBC came to ask for God's healing and presence in my situation, and I know a lot of people in the UK and further afield are lifting me up in prayer.

 

OT and Physio

17^th April 2019 - 6 years ago

In my shameful ignorance I thought that an occupational therapist (OT) just checked that you could make a cup of tea and lock the front door and that physiotherapists could help injured footballers or gently ease long term muscle or joint pain, I had no idea how much they could both help me in my current situation.

After a week of treatment my rib and back pain were seriously affecting my mobility. We were at a real loss as to where to turn for help, the hospital advised more pain medication but this wasn't solving the problem and I was seriously worried about not being able to get out of bed or walk across the room.

Cheryl phoned around all the people we'd been given numbers for, including the Newton Abbot Intermediate Care Team, who put us on the urgent response list.

An OT came and fitted a bar to the bed to help me lift myself out, but on seeing me use it said, "That's no good, we'll get you an electric bed". This was installed into the spare room the next day, Cheryl's been relegated to the bed settee so at least we're in the same room! Whilst I wasn't keen on using the electric bed, it has proved very useful as I can sleep comfortably and get in and out of bed without any pain (now that I've perfected the technique!)

The OT also suggested that I sit in an old-man chair, so we located one in town. It makes such a difference to be able to sit comfortably.

We have since had 3 physio visits from the Intermediate Care Team, all of whom have been lovely and very, very helpful. It seems that I was 'protecting' the painful areas in my back and ribs by limiting my movement and tensing my muscles. This was leading to shortened muscles and a lot of tension which exhibited itself with incidents of strong pain whenever these muscles were activated in a certain way. So, whilst the pain was from the myeloma in my bones, it was the tightness of my muscles that was triggering it.

Through a combination of stretches and gentle exercises I have been able to greatly ease this tension and have regained a good level of mobility. I can't stress enough how helpful this has been and how grateful I am to the physios for their care, time and advice.

 

Treatment - Monitoring progress

29^th April 2019 - 5 years ago

We met with my consultant on the last day of the first 3-week cycle of treatment to ensure that I was well enough to immediately start the second cycle. This will be the case for each of the four cycles, which will then follow through to the high dose treatment and stem cell transplant.

We discussed various side effects and the management of the rib and back pain that have been troubling me.

The main indicator of myeloma is the level of a specific protein in my blood, Immunoglobulin G (IgG) This is much easier to test for than repeating bone marrow biopsies or CT or MRI scans so is used to track the effectiveness of the treatment.

As a scientist I've been very surprised that the hospital haven't made a measurement of my IgG level each time they've taken my blood for other tests, especially at the first consultation and just before treatment itself started. So all we know is that the IgG level was 39g/l from the blood taken at the GP's on March 7^th which led to my diagnosis. We've therefore got no idea how this level has changed in the month leading up to my treatment starting. It also seems strange that the protein blood test is only carried out once a week, several days after my meeting with the consultant, so I've not yet had the opportunity to discuss the result with them and sadly don't have enough data to plot a graph!

The consultant said that she would hope that the IgG level would drop by half during the first cycle, so I was very pleased a few days later when the specialist nurse phoned and told me that it was now at 12g/l - a third of it's value from 7 weeks previous.

I am relieved to think that the treatment is working against the cancer itself and am looking forward to getting the level at the end of cycle 2 which I'm over a week into.

 

First solo injection

3^rd May 2019 - 5 years ago

I should have been in Kos, Greece, this week celebrating my Mum's 70^th birthday, but clearly was unable to travel.

Instead, I was at home performing my first solo injection of the chemo drug Velcade. Since this drug is better injected than infused, I don't have to sit in the Ricky Grant ward for hours as many chemo patients do. After the first treatment cycle they encourage you to inject yourself at home, saving 3 trips to the hospital per cycle. Clearly this seemed like a very good idea to me - although you can see I wasn't too relaxed about it in the photo! At least Cheryl didn't pass out having to watch me do the injection.

It's a bit of a process involving putting the needle on the pre-filled syringe, cleaning the skin, pinching an inch of belly fat (I'm working on keeping this up by eating lots of cake and cheese!), making sure you've not hit a vein, overcoming the strange concept of stabbing yourself with a needle, slowly plunging the toxin into your body, then throwing all the bits into a massive sharps bin provided to us and breathing a sigh of relief.

Anyway, I've got the hang of it and all seems to be going well. If I add giving injections to my work-based first aid certificate I'm practically considered a nurse myself now!

 

Improved mobility

9^th May 2019 - 5 years ago

Following the advice from the 3 physios, my mobility has improved to the point that for most of the day I'm moving quite normally, getting up and down without thinking about it too much, carrying more things about, washing up, cooking, going for short walks outside. This is all very positive for me. I'm a bit more delicate when I get up, and still needing naps during the day due to not sleeping well (partly due to the steroids and partly due to needing to move around in bed to not stiffen up too much).

The pain is now mostly in my ribs, still moving around depending on what I've been doing. I'm taking the full 8 paracetamol each day but I've not taken any of the liquid morphine for a few days, and have had no strong incidents of pain for about a week now, so I'm more relaxed.

 

Week off - almost a holiday!

14^th May 2019 - 5 years ago

The chemo treatment is a number of 3-week cycles, I'm currently in week 3 of the second cycle.

I have two Velcade injections in week 1 of each cycle, another two in week 2 and then week 3 is a 'week off' with no Velcade or steroids, but still the thalidomide and all the other tablets.

The week off in the first cycle wasn't much fun as my pain and mobility were so problematic, but I'm actually enjoying it this time as I'm sleeping better due to not taking the steroids, I feel much more myself again. I've been more active and able to get some things done.

Next Monday I'll see the consultant to discuss my treatment, and then hopefully move straight on to the third cycle next Tuesday.

The second phase of treatment will hopefully follow 4 cycles of this 'induction' chemo, so I'm going to be asking the consultant all about that next week. I expect I'll need another bone marrow biopsy and possibly a PET CT scan or MRI scan before progressing with phase 2 of the treatment.

My pain is now mostly limited to the lower sides of my rib cage, with some sensitivity in my back and sternum. It's been a fortnight since I've had the strong incidents of pain, so I'm much more relaxed getting around and am starting to do the back exercises advised by the physio.

 

Challenges - physical and emotional

19^th May 2019 - 5 years ago

As a natural optimist it's easy for me to put a positive spin on any situation, and in my blog I want to reassure my friends that I'm progressing well. It is fair to say that I'm in a better place now than any time in the last couple of months.

It is hard to separate the body and mind, in fact I feel that the two are very much one. The mind can have a
very powerful effect on the body, and a small set-back can be quickly magnified in your mind to become an issue which causes great concern. We are working hard to keep perspective, by talking about everything openly and remembering the good progress being made.

Some things, though, are causing me concern -

Underlying pain levels

I've got used to having rib pain since the start of the year, and more recently back pain as well. The back pain and general feeling of delicacy in my upper and lower back have eased considerably since seeing the physio 4 weeks ago.

The same day that we had the first visit from the physio I started wearing the slow-release morphine patch that Rowcroft arranged for me. You keep these on for a week, then change them for a new one. I didn't know how much benefit this was giving, so on Friday this week I took it off a day early and didn't replace it. By the evening my back was feeling very delicate and on Saturday I had quite a lot of pain in my back (but no worse in my ribs or sternum).

It therefore seems that the patch was more effective than I'd realised. Good news that it works, but I was surprised to realise how bad the underlying pain still is - I had hoped that it would have diminished as a result of the treatment.

I have since applied a new patch. I aim to cut down on the paracetamol I take each day as this is easier to control, and there is a lower dose morphine patch which I can try next time I want to reduce my pain medication.

Weight loss

My weight is generally very stable around 61kg, so I was surprised to find at diagnosis that I had dropped to 59kg without realising it. Since then I lost half a kilo a week for a few weeks and have then levelled off around 57.5kg.

I've had a healthy appetite so far on treatment and have been eating 2 hot meals most days along with a normal breakfast and a number of snacks. I'm trying to get my weight up so that I've got something to work with in the second phase of treatment when I expect not to be eating so well.

Each Sunday morning I weigh myself, and each time I'm disappointed to find that I've not put anything on. I am glad that I'm not losing more weight, but it's frustrating not to be able gain any.

The looming prospect of the High Dose Treatment

Tomorrow will mark the end of the second of 4 cycles of chemo, so, unless I need more cycles, that will mean that I'm half way through the first phase of treatment - cause for some celebration! It is fair to say that I'm really not looking forward to the second phase with the high dose of a strong chemo drug which wipes out my bone marrow altogether and requires a 3-week stay in hospital. As this approaches I expect I'll become more anxious about it, although we have heard from some people who have had the same treatment that it wasn't as bad as they expected.

Uncertainty over the effectiveness of the treatment

Whilst the IgG level dropped considerably in the first cycle of chemo, I've been surprised and disappointed that the pain in my ribs hasn't eased. I had hoped that the bone pain would quickly respond to treatment - along with the bone-strengthening bisphosphonate, but maybe I'd misunderstood the timescales and effectiveness of this.

Uncertainty over the future

Well, we all have a good amount of this! I've mostly been focused on the treatment, but during this 'week off' have had the clarity of thought to think about having cancer and the prospect of life after treatment. As I said to a good friend who was Rich-sitting this week, I feel as though I've woken from a dream to find myself in this sobering situation. I'm really ready to be better, to get back to life. I know that without treatment the prognosis is pretty stark, so am very grateful to be able to have treatment and hopefully have the opportunity to live in good health for years to come. We have heard lots of stories of people living very active lives post treatment, including those whose back pain was much worse than mine.

Cheryl's back

Unfortunately, Cheryl has hurt her lower back and is in a fair bit of pain. She's not prone to back issues, so this is a bit of a set-back. We're not sure if she'll be able to drive so we may be relying on lifts to and from the hospital this week as I'm also unable to drive at present.

It's hard for me to see Cheryl suffering after she's been doing so much to help me, I hope that her back quickly recovers.



Those are the main things causing me concern, I just wanted to note them as despite many improvements over the last few weeks, the process is difficult and the next few months will have their challenges.

We are still feeling positive and looking to the future, but living day-to-day is hard work. It has been of great help and encouragement to us to have visitors, phone calls, emails and text messages from friends and family.

 

Treatment - Monitoring progress after cycle 2

20^th May 2019 - 5 years ago

I have now completed cycle 2 of the induction chemo treatment. Similar to my update on the 29^th April this means that I have seen the consultant and been given the go-ahead for cycle 3 which starts tomorrow once I've collected all the meds from the hospital.

Ah - enough data for a graph at last! The bars are spaced correctly in time and the height indicates the paraprotein level in grams per litre of blood (no, they don't take a litre to do the test!)

I decided to take control of my own treatment by asking my GP to arrange a blood test last Thursday so that the consultant would have a reading of the IgG protein level near to the end of cycle 2. This tactic worked very well as the consultant had the data at her fingertips today.

The good news is that the protein level has dropped to 5.6g/l which is enough to already put me into 'partial remission'. The consultant was very positive about this response, and we are clearly delighted that the treatment is proving effective. The aim is to get the protein level as close to zero as possible - or even zero itself.

Due to the good response so far, the consultant confirmed that 4 cycles of chemo should suffice, which is more good news.

We asked lots of questions about phase 2 of the treatment, being the High Dose Treatment (HDT) and Stem Cell Transplant (SCT). It sounds challenging and will include around 5 days of feeling nauseous and having bad soreness of the throat and other mucus lined parts of the digestive system. Hopefully 2 weeks in hospital will be enough, but 3 is standard. I may have 3 weeks or so 'off' between cycle 4 ending and the HDT and SCT treatment beginning. I'll write more about this nearer the time.

In conclusion, this was a positive visit and I will start cycle 3 tomorrow with confidence that it's working.

 

Cycling, well, cycle 3 of my treatment at least!

27^th May 2019 - 5 years ago

Last week I posted 2 key updates, one on my concerns and the other on the good progress of the treatment.

This week I've gone from the relative physical vigour and mental clarity of the 'week off' into the fatigue and fuzzyheaded-ness of being fully back on treatment. I've found it challenging as it seems to be such a step backwards, but really I have to remember that I'd just got through 5 weeks in a similar state and only have another 3 weeks fully on treatment in phase 1. The 'week off' was certainly a welcome break, and there's 2 more of those to come.

I've only managed a few short walks this week and have been very tired. Sleeping has been disrupted the last few nights by a pain in my upper back which has woken me several times but passes when I move around. I'm getting 5-6 hours of broken sleep, which is better than some other weeks, but I am very tired during the day. I've had a couple of minor side-effects, being flushed and having a coated tongue which affects my taste.

A brief update on the things I was specifically concerned about in last weekend's blog post -

Underlying pain levels

I've kept the pain medication steady this week, in the last few days I've noticed that the rib pain itself seems to be diminishing which I find very encouraging. My back and sternum mostly seem improved as well, apart from the one point in my upper back which is rather delicate. I would like to reduce the pain medication to be more aware of the remaining pain, but will do this gradually.

Weight loss

Yesterday morning, after a week of not being so focused on eating as much as possible, I expected the regular disappointment of having gained no weight. However, I had actually put on almost 1kg - a very nice surprise. My parents were staying in Shaldon for a fortnight and brought me several pies and pasties for lunches, maybe that's the diet to follow!

The looming prospect of the High Dose Treatment

I'm still rather worried about this, but have greater understanding having discussed it with the consultant last week.

Uncertainty over the effectiveness of the treatment

Seeing the IgG paraprotein level drop again in the second cycle of chemo, and with an ease in the rib pain, I have more confidence that the treatment is working effectively.

Uncertainty over the future

Not much that I can add here after a week - the future is still a vast unknown expanse, hopefully planted with trees, lit by sunrise, washed by the sea and filled with the song of birds.

Cheryl's back

Cheryl's back has been improving, she's been able to drive and go to work, but it's still painful at times. Cheryl's also tired from our broken nights and the anguish of my illness.


Today I go to the hospital for a blood test to confirm that I'm able to have the third bisphosphonate infusion tomorrow, this is the ancillary treatment which helps calcium bind to my damaged bones.

I'm starting to feel the frustration of not doing all the things that I was planning to do during the spring and summer this year, the activity, events, responsibilities, adventures and other opportunities. I'm going to have to focus on picking these up late in the summer and autumn, but it is hard not being able to do the things that I love now.

We're still very much living day-to-day, glad to have the physical and emotional support of friends and family and the comfort of being at home.

 

Day 60 of 84

7^th June 2019 - 5 years ago

I'm now halfway through the 'week off' at the end of the third cycle of chemotherapy. I was feeling a bit down during the first few days of the week as I still wasn't sleeping well and my pains were not as reduced as I'd hoped. I've lowered my paracetamol usage from 8 to 4 tablets per day and am more aware of the pain in my back, which is a general dull ache that is a bit worse with movement, but still nothing like the strong pain I was experiencing a few weeks ago. My rib pain continues to gradually diminish.

Yesterday and today have been much better, I'm feeling clear-headed and much more lively - I've even been going up the stairs two at a time! I'm sleeping better now that it's a few days since I've had any steroids. Several days this week, Cheryl and I have been for our regular walk round the block which we've not done since before my diagnosis. It's a 2-mile loop, including going up to the church on the hill with views over the whole of Newton Abbot, down the estuary to Teignmouth and up onto Dartmoor. I'm walking at a normal pace and starting to feel stronger at last. It's lovely to get out and enjoy Devon views. Yesterday I enjoyed walking along Preston beach to Paignton pier. It had been too long since I was on the beach, it felt like coming home to where I belong, a place of intoxicating peace.

We've been encouraged by having lots of visitors, and by friends and family getting in touch to see how we are. The team of Rich-sitters, and those providing tasty, home-cooked meals for us continue to be a great help. I've also enjoyed being able to take part in more of our regular activities and am doing plenty of cooking, some gardening and have made some things in the garage. My appetite is good, taste has been improved, and my weight is stable around 60kg. All good news.

Cheryl's back is slowly improving. Following a visit from the physio a week ago, I've been getting out of bed manually rather than using the electric lifting mechanism. Hopefully we can soon return to our own bed and both sleep more comfortably.

Yesterday I had blood taken for the protein test, so when I see the consultant on Monday she should have the results. All being well, next Tuesday I will start the fourth and final 3-week cycle of chemotherapy.

With my head being less fuzzy, my thoughts have been more philosophical, and I've been thinking about life after treatment. There's a lot of unknowns, but I'm sure that once I'm physically stronger I'll start to feel more like myself again.

I am finding that time is slipping by very quickly, which is good in many ways, but I'm struggling to keep up with communication and all the small tasks that seem to pile up each day. Still, I know I must focus on getting better and not get weighed down when I can't do everything that I would like to.

 

Treatment - Monitoring progress after cycle 3

10^th June 2019 - 5 years ago

I can't really believe that we're into June already, this year has certainly been a blur so far. Of course with all the torrential rain, it feels more like April!

This afternoon we met with my consultant to discuss the end of cycle 3 and make sure that all is well to go ahead with the forth and final cycle of the induction chemotherapy which will start tomorrow. Once again I'd had a protein blood test taken at the GP surgery so the consultant had the all important paraprotein level today. This has dropped from 5.6g/l to 3.2g/l. Not quite as low as I'd hoped, but still heading in the right direction. The doctor seemed pleased with my progress and said that I'm now officially classed as being in 'Very Good Partial Remission'. The best response to treatment, 'Complete Remission', is apparently hard to achieve - but there's still time, so I'll aim for that in any case!

Cheryl's Mum is currently being treated for lymphoma, so is under the care of the haematology unit at Torbay Hospital, as indeed am I. At this afternoon's clinic, whilst Cheryl & I were sat with my consultant, Cheryl's Mum was in the very next room meeting with her consultant. We got together afterwards to compare stories. Unfortunately the simpler chemotherapy tablets that Cheryl's Mum has been on for the last few months aren't working, so she'll have to undergo a course of traditional chemotherapy over the next few months as she did 4 years ago. We're hoping that she'll respond to it as well as last time and not have bad side effects. Clearly Cheryl has a lot on her plate with this all going on at the same time. Cheryl is, understandably, really worried about my upcoming 3-week stay in hospital, it's a long time for her to be home alone, especially as she'll be worried about me feeling unwell, and the fear of the stem cell transplant not working (which would be really bad after the high dose treatment wipes out all of my bone marrow!)

I now have 2 weeks on full treatment, then a week off of the stab-yourself-at-home Velcade and say-goodbye-to-sleep steroids, then around 3 weeks with no medication (wow!) before phase 2 commences. After I come home from the HDT/SCT, the aim is that I'd need no ongoing medication and would live happily in remission for a number of years - sounds pretty good to me.

We didn't ask any further questions about the HDT and SCT treatment as we'll be referred to Derriford Hospital in Plymouth to go through all the details of this in the coming weeks. I'm far from relaxed about this second phase of treatment, but I am feeling much more settled about it. Whilst it will be unpleasant, I know it is for a relatively short period of time and gives the real benefit of a deeper and longer period of remission.

I've had some new rib and back pain recently which has troubled me, it may have come from being more active and moving more normally, although I don't always know what causes new areas of pain to emerge. I really hope to be free of pain and able to live an active life, not reduced to light duties forever. I am hoping the back exercises will help in the same way that the stretches helped with my pain early on.

At the weekend we met up with the father of a friend of ours who was diagnosed with and treated for myeloma 10 years ago when he was 64. Considering he was only given a 20% chance of surviving the pneumonia that led him to hospital where he was then found to have myeloma, he has done rather well over the last 10 years. It was good to talk to someone who's been through the treatment and lives with the disease. I must confess, however, that I came away feeling worried about my future. It's been easy to focus on the current treatment and I don't often think beyond it, so the awareness of having cancer for the rest of my life is sobering to say the least. I need to remember that I should be able to live a fairly normal life whilst in remission, the main issues being that I'll be much more prone to picking up infections, and potentially have weak bones, although I'm hoping that they'll strengthen up again.

I put on another kilo recently to get up to 60kg, close to my normal weight, but have lost a little again, so am hovering around 59kg. We're going to focus a bit more on my diet, increasing the amount of protein that I eat. I've gone off of sweet things, so am not eating much cake or any biscuits, but plenty of chips, crisps and cheese should assist the fattening up process.

Going on a brisk walk most days has been really helpful as it makes me feel more normal, gives me much needed exercise, gets me out of the house and enjoying views and reminds me that I'm now a long way off of my normal level of fitness. I'm going to try and get as much exercise as possible in the weeks leading up to the HDT/SCT so that I go in healthy and can weather the storm for a few weeks when I'm secluded in the sealed hospital room.

 

The uncertainty continues

19^th June 2019 - 5 years ago

I thought that going into cycle 4 would be fairly easy after completing the first 3 cycles, but this last week has been surprisingly difficult. The cumulative effect of the main chemo drug, along with all the other medication, seem to be making my mind very fuzzy. I commented to a good friend who was Rich-sitting on Monday that my mental prowess now matches that of a normal person rather than my typically heightened state! (Yes, that's an egotistical joke, don't take me seriously!) I've also been very fatigued, sleeping OK but suddenly running out of energy and needing naps during the day. The hours seem to slip by with me doing a bit of washing up, cooking, taking tablets, a few emails and messages, little bits of work or coding, looking after our friend's girls, a good walk round the block each day and then night time arrives. It's hard to imagine fitting in a full day's activity.

I've been feeling a bit low with the continued pain, which comes and goes and is mostly quite manageable, just frustrating as I was hoping to be clear of it by now. I'm still concerned about how carefully I'll have to live life after treatment, or even if the treatment will be effective against the damage to my bones, but again I hope to be able to return to a fairly normal life.

Today, I feel much more with it (hence the update, at last), mentally clearer but still tired.

Yesterday we met with the specialist haematology nurse to talk about the HDT/SCT process and I now have some initial tests booked for next Thursday to check my heart, lung and kidney function before being cleared to have the High Dose Treatment. I also have an appointment with the Stem Cell Transplant team at Derriford Hospital in Plymouth on Wednesday 3^rd July. We'll find out more about the process, which has been referred to as making you, "feel like you've been hit by a tractor". I don't know if nurses around the country adapt this to less rural analogies, e.g. in Sheffield, "feel like you've been hit by a tram", or in London, "feel like you've fallen onto the live tube rail"... Probably not much fun however you explain it. I'm trying to get some figures on how much longer the remission period is likely to be with the HDT/SCT treatment compared to without it, but such data seems hard to come by - especially for younger patients.

The nurse said yesterday that Derriford might not be able to fit me in as quickly as hoped, so then I might need another 3-week cycle of the induction chemotherapy just to keep the myeloma at bay whilst I wait to be booked in. Psychologically, this would be a bit of a blow as I'm looking forward to finishing phase 1 of the treatment and being able to put something behind me.

I was going to include a photo of a load of empty pill sheets and boxes which I build up at the end of each cycle, only to be given more the next day as I start the next cycle. I've written, "The end!" on the sheet for Monday 1^st July, so it would be a shame to have to restart on the following day, just for the sake of a waiting list. Still, if that's what happens, it'll hopefully only be another 3 weeks and I'll just have to get on with it. Instead, though, I've given you a photo of a tasty moussaka that I cooked a few days ago to demonstrate that we're still working hard on getting my weight up. The coating on my tongue is slightly improved, only affecting the very back of my tongue now, so at least I'm mostly enjoying the taste of food again.

We're starting to think and talk about things to look forward to doing post-treatment, but I'll have to take it easy for a while, they normally expect people to need 3-6 months to get their strength back, I'd expect to be very much at the quicker end of this range. Not sure that I'll be skiing next January though!

Cheryl is doing very well at coping with all of this, and everything else that's going on, but will need your support whilst I'm so poorly in hospital.

 

The longest day

22^nd June 2019 - 5 years ago

Yes, I know it was yesterday, but at this sinusoidal peak the length of the day changes very slowly so you won't notice the difference! I woke up half an hour before the very early sunrise this morning so thought it an opportunity not to miss and went up the road with a cuppa to enjoy the start of a new day.

I'm not sure if it's the 2 days of sunshine, the support of friends, the effects of the steroids, having some nice walks, or a combination of all these things, but I've been feeling much better and more positive over the last couple of days.



At 9am this morning my good friend Andy Robertson set off on his ultra-run along the Dorset coast. I'm writing this at 3pm, but whilst most runs or races would have been over well before lunch, Andy's running 100 miles on the coast path, so it's going to take the best part of 30 hours, including about 4 hours in total darkness. We're all very impressed by Andy's readiness to approach this monumental challenge and are wishing him well. As you probably know, Andy's been inspired to use this event to raise money to support the work of Myeloma UK. If you'd like to support him in this please visit his JustGiving page. I know that many of you have done so already, thank you.

Right, just a quick update today to spur Andy on!

Wahoo - Andy made it!

Well done mate, what an achievement, we are all in awe of your strength, determination and perseverance - characteristics that I am also tapping in to.

 

Cycle 5 of 4

1^st July 2019 - 5 years ago

Yes, that's right, tomorrow I will start another round of induction chemotherapy. This is just to keep the myeloma in check whilst we wait for a slot for the stem cell harvest at Derriford in Plymouth.

I feel quite frustrated and disappointed by this extra treatment cycle, medically I don't need any more of this chemotherapy as the paraprotein level is low enough now to proceed with the HDT/SCT process. The effects of fuzziness and fatigue seem to be cumulative over the cycles, the start of cycle 4 was particularly bad in these regards, so I'm not keen to undergo another round. I was just about psyched up for the HDT, but this is now pushed back so I'll have to try not to think about it too much until it's upon us again at the end of the summer.

So, this is just a 3-week setback and there's actually some benefit in having another round as it will lower the amount of myeloma in my bones slightly before the stem cells are harvested. They always used to give 6 rounds of induction chemotherapy, so I should view it as one fewer rather than one more!

I have an appointment with the SCT team in Plymouth this Wednesday, the stem cell harvest is booked in for Monday 12^th August, then there's another wait with the High Dose Treatment expected to take place at the end of August or the beginning of September. This is all about a month later than we'd expected. I was looking forward to being back home in September to start my recovery and recuperation while the weather was still good, but this will now likely be late September or early October. On the upside, I'll have some time in July and August when I'm not on any chemotherapy treatment so will be able to enjoy some aspects of the summer.

When we saw my consultant today, she was very pleased with the way I've responded to the treatment. The tests I had on my heart and lungs both show that I'm fighting fit - I don't think they treat many people as young or healthy as me. The consultant also confirmed that we caught the myeloma quickly and that I should expect my damaged bones to gradually heal to the point where they'll be as strong as anyone else's. I certainly hope that's the case as currently I still get some pains that last for days or weeks after a slight impact on my ribs or strain in my back.

Cheryl asked about the bisphosphonate treatment, the consultant confirmed that it does gradually help the bones to restructure themselves to correct some of the damage, she also said that patients who have this treatment live longer than those who don't. So, whilst a sobering reminder that the disease is serious and life limiting, good to have these monthly infusions to give me the best chance of a good period of remission.

Wot no graph?

Ah, well, the consultant was so relaxed about the fact that my paraprotein level has dropped well during treatment that she could only say that it is now "2 point something" grams/litre. I'll ask the nurse to look it up when we go in to collect all my medications tomorrow!

The cabbage bhajis in the photo helped me put on a bit more weight, I'm now around 60.5kg - almost back to normal (except that the muscle has gone and the middle-age-spread has appeared!) I also made cabbage noodles to have with satay, turns out it's a very versatile vegetable!

Last week I halved my morphine dose from 10µg/hour to 5µg/hour and this weekend I halved my paracetamol intake from 4 to 2 tablets a day. I'm trying to stay aware of the pain without being hindered by it.

I've been generally more active, doing some gardening and maintenance, moving more naturally and spending more time on back exercises. I'm able to sit for longer in 'normal' chairs, or sit on the ground, but am still taking it very easy lifting or carrying things as the weight can easily strain my back. I'm going to give the exercise bike a spin and maybe pop down to Dyrons for a swim.

I may well send another update on Wednesday evening following the meeting in Plymouth.

 

Rich is talking about maths

3^rd July 2019 - 5 years ago

A couple of months ago, after seeing me at my least mobile and most anxious about both the diagnosis and the treatment itself, Esther & Heidi who we collect from school and have dinner with 2-3 days a week were with us, Heidi said, "Richie is getting better, he's talking about maths!" Indeed I was both starting to feel better, and talking about maths. It's been a frustration of mine that the treatment doesn't provide me with enough scientific data, e.g. there was no paraprotein level checked at the beginning of my treatment, and there's to be no repeat of the PET CT scan. Personally, I would think these would be very helpful to assess both the effectiveness of the treatment and the state of the remaining myeloma.

The consultant said on Monday that my paraprotein level was "2 point something g/l." Yesterday the nurse gave me a print out of the last 3 blood test results, this showed that last week's result was 2.2g/l, so a good drop from 3.2g/l.

Now we're getting enough data for a proper graph! Having been given the idea by our good friend Mary, I've added the percentage drop between each reading, not surprisingly the amount of the drop decreases each cycle as there's less myeloma left for the treatment to work on, and it may be harder for it to get at the residual cancer cells. That's my analysis at least, and it would indicate that the level should drop to around 1.8g/l by the end of cycle 5, a nice low level to be at before the stem cell harvest on 12^th August.



I should have said on Monday that they've now taken me off of Thalidomide as they don't want it to cause any nerve damage! Apparently it can cause tingling in your hands and feet, not something I've experienced, but I did have a lot of slow movement of my fingers, and sometimes toes, in the first two cycles, so maybe that is why. Since that was a separate tablet to take just before bed, I now only have 2 times in the day when I have to take pills. Being back on the steroids is a pain, I only got about 2 hours sleep last night.

I've been feeling much more positive about the timing of things, still frustrated that there's waiting around at this stage, and having to have another round of the induction chemotherapy, but I'll just have to get on with it.

 

Going through the phases

13^th July 2019 - 5 years ago

Yesterday marked my final injection of the main chemotherapy drug (Velcade) in this induction treatment, I jabbed myself with it after breakfast. I now have 10 days for the cycle to complete, mostly just letting it take its course. Then I'll see my consultant at Torbay Hospital and hopefully move swiftly on to the next treatment phase, the HDT/SCT.

Last Wednesday, 3^rd July 2019, we had a meeting with a member of the Stem Cell Transplant team at Derriford Hospital in Plymouth. He, and the specialist nurse, were very forthcoming with details of the aims and method of the treatment. One of the key questions I asked was, "What is the actual aim of the HDT/SCT". I had hoped that the response would be something like, "It gives you a better quality of remission (e.g. with fewer symptoms) and a three-times longer period of remission than without the treatment". However, the doctor simply said, "It gives you an extra 18 months of remission".

Unfortunately, Cheryl and I both came away feeling rather low. It was very similar to the feeling at the original diagnosis as the conversation was based around the seriousness of the disease and my situation. Whilst the doctor was very approachable and happy to discuss my questions and concerns, again having plenty of time for us, I felt that he was less optimistic about a long period of remission. At 44 years-old I am young to have and be treated for myeloma, so am focused on remission periods being as long as possible. Some of the treatments I have had or am about to have cannot be repeated (they can do a second SCT but generally no more), but new treatments are being developed all the time and may well be available if and when I need them in the future.

We often speak of "10 years of remission", perhaps just wishful thinking to make the current treatment process and entire situation easier to bear. The doctor said, "Whilst no-one is average, the average period of remission is 3 years". I asked the doctor if my young age would have an influence on the expected length of remission, he said, "No."

The doctor was, however, positive about my bone pain decreasing and bone strength and general physical ability improving, as was my consultant in Torbay. Both were also positive about the recovery of my immune system after the HDT/SCT phase.

So, it is with mixed feelings and a good deal of trepidation that I find myself in the situation of having little choice but to opt for a course of treatment which I am uncertain of the long term benefits weighed against the long term damaging effects to my body. When I discussed this with the doctor, he made it clear that choosing not to have this phase of treatment would cut off a key opportunity to fight the myeloma, and that this route would then no longer be available to me.

Generally, my pains are gradually decreasing, I'm feeling more 'normal' (OK, you never thought I'd claim to be in any way normal!) and I'm more able to get on with daily life. I'm still very tired, both from the drugs and the lack of sleep from taking steroids, of which I've taken the last round today!

My sister, Helen, and her girls, Sara and Hannah, have been staying close by this week, so we've been having some really good times together.

Cheryl clearly has a lot going on, we're still able to fulfil most of our chosen responsibilities regarding work and looking after our nieces and 'nices'. Cheryl's back is much better and her Mum has not had to go onto any further treatment for her lymphoma, although this will be monitored over the coming months.

 

Change of focus

20^th July 2019 - 5 years ago

Today marks day 103 of 105 days of induction treatment. Next Tuesday we're seeing the specialist nurse who will confirm dates for the coming few weeks, including the stem cell harvest. It's likely that the HDT and stem cell reinfusion will be at the end of August.

It's a week from the last Velcade injection and steroids, my mind is clearing nicely and I'm feeling much more my 'old self' again. I've still got some rib and back pain, but it's manageable with care. I did suffer a set-back last Saturday with a new and unpleasant pain at the base of my back, but that only lasted for 2 days and is now hopefully in the past. I'm still using a low-dose, slow-release morphine patch and, currently, taking 4 paracetamol each day.

Whilst my focus is, understandably, on the treatment and my future with the disease, I am starting to feel more positive about what I can do now, and getting back to life after all phases of treatment and the recovery period. We are starting to talk about things that we can do in the future.

It's helpful to look back and see how far I've come physically from the problems I was having around the time of diagnosis and the start of the treatment. I've not started my fitness regime yet as I need to make sure that my back is up to it, but I hope to start using the exercise bike soon to get my heart going a bit after it's unplanned 6-month holiday!

I'm very grateful that the side-effects of my chemotherapy treatment are much easier to cope with than those of more traditional chemotherapy - as I'll soon find out! But, as the months go by with all their daily struggles and frequent hospital appointments, Cheryl & I are tired out both physically and emotionally.

We are still very much encouraged and helped by visits and contact from friends and family, along with garden produce and meals from neighbours and friends which really help when we're tired and need something quick to eat. The pictured new potatoes are from our neighbour's allotment and the beetroot and courgettes on the tart are from a friend's garden, even the feta was a gift. Yes, Cheryl will only eat her dinner if it's served on a plate themed with Torquay United's colours!

 

Mind the gap

3^rd August 2019 - 5 years ago

A quick update after being quiet for 2 weeks. I'm enjoying being clear-headed and, after not being able to concentrate on reading for the last few months have really enjoyed reading a couple of books.

We've not had many hospital visits, just some blood tests and a bone marrow biopsy (not too painful this time). The results seem good, although they haven't given me the key figure which is the percentage of the sample which is made up of plasma cells. In a normal person this would be around 2-3%, but in myeloma patients it is greater than 10%. At diagnosis my bone marrow was 70% plasma cells - a very high proportion, so I'm keen to know what it is now. The specialist nurse (not the one who's been dealing with my treatment recently) who phoned with the results said that there was, "No myeloma in the bone marrow", but I need to have this clarified as I don't really know what she means.

The 2 main points of pain in my ribs (one on each side, which was making sleeping uncomfortable) are better, which is great news. I expect that my ribs are still very delicate, but I'm not putting that to the test! My back tends to be painful when I wake in the morning, quickly eases, and is generally achey in the evening. Not too bad really. I hope that there's not any permanent damage to my spine and that in time I'll be free of back pain. I'm still doing the stretches from the physio, am gradually lifting more and moving more freely, but am still very aware of the delicate nature of my back.

My parents have been staying nearby this week. On Tuesday we went for a lovely 3-mile walk through the woods along the river Lemon. Another day we walked from home, again along the Lemon, downstream to where it joins the Teign, then on to the Passage House Inn for lunch, and back again. 5 miles in all, my longest walk since starting treatment.

I feel a bit in limbo, waiting for the HDT/SCT. I often don't know what to do or how to feel each day, really I'm ready to be past the next phase of treatment and focused on getting better again as best I can.

 

Getting ready for the harvest

12^th August 2019 - 5 years ago

Finally I've been able to start my fitness regime with the aim of raising my heart rate and building some muscle where it's faded away. I've been on the exercise bike every day this last week, for around 10 minutes each time, going at a good rate, clocking up 4km each ride, whilst not moving out of the garage! A far cry from the 90 miles per week I was cycling in the Devon lanes last summer, but a good start.

Following 5 rounds of "induction chemotherapy", I am now preparing for the High Dose Treatment (HDT) and Stem Cell Transplant (SCT). I'll be going down to Derriford hospital tomorrow (Tuesday) for them to spin hundreds of thousands of stem cells out of my blood using a process similar to a dialysis machine. Due to an anti-clotting agent added to the blood as it's separated in the machine and returned into my vein, I might get tingly lips - this is apparently easily resolved by drinking a glass of milk. Maybe I'll take some lime Crusha concentrate down with me!

To make sure that there's plenty of stem cells flowing around in my blood stream, I've had 4 days worth of a triple dose of GCSF injections (Granulocyte Colony Stimulating Factor). These cost £500 per dose, so £6,000 over the four days! It's certainly a reason to be grateful for the NHS, I'm definitely getting the benefit of some of the tax that I've paid in recent years. The main side effect of GCSF is bone pain, something that I'm very familiar with and not unduly worried about at this stage. I've had mild aching in my hips and some other bones and joints which is quite manageable.

However, the GCSF injections have triggered some serious lower back pain which has led to a very difficult and stressful few days. At times this weekend I've been having strong spasms when sitting, lying down or standing, it's been very hard to get any relief from the pain. In the early hours of Sunday morning we couldn't stop the pain and were very concerned. I took some liquid morphine and we were visited by a paramedic after Cheryl phoned 999, both of which helped ease the pain. I now have some diazepam which works as a muscle relaxant and thus reduces the spasms to a degree. I was able to sleep quite comfortably last night and have been OK today until shortly after the fourth set of injections this afternoon which led to a period of strong and consistent painful back spasms for an hour or so. I hope that as the injections have now finished, the effect of these will diminish and the pain will be resolved. Until then I am taking a regular dose of liquid morphine, along with the maximum dose of paracetamol and diazepam.

With a combination of pain relief medication and a hot water bottle, I hope for another relatively pain free night before our early start to get down to Derriford to be on the ward before 9am. We are worried that I'll find it difficult to sit still in one position for the 4 to 5 hours needed for the stem cell harvest, we've let the staff know and hope that between us we'll find a workable solution.

I'm looking forward to coming home after the harvest and resting for a day or two so that I can then get back to strengthening my body before the next phase of treatment in around 10 days time.

Thanks again to friends and family who have supported us with visits and phone calls, we are greatly encouraged by these and value time with people who care for us in what has been an unexpectedly difficult few days.

 

Harvest update

13^th August 2019 - 5 years ago

Dear friends, this is Cheryl writing so please forgive the change of usual ‘Rich’ style! We are currently in Derriford for Rich’s stem cell transplant. Most of you will be aware that Rich has been suffering with bad back pain over the last few days, possibly due to the injections prior to the stem cell transplant. We arrived in Derriford at 8.45 this morning as requested , Rich had blood tests taken to make sure there are enough cells to take for two transplants. It seemed likely to the medical staff that this would be quite straightforward, apparently the more pain you have, the more your stem cells are ready to go! At least that’s my (limited) understanding! We are still waiting for the process to begin as there seems to be some issues with getting the machine loaded and prepared! The blood tests have come back, unfortunately it shows there are only enough for one transplant’s worth which means another trip here tomorrow for the same procedure, which means another injection later today! So, not only have we still not yet got going today with this process which is likely to take four hours or more and worrying from the perspective of Rich being uncomfortable if he has to sit for too long (he is totally unable to move with a cannula in each arm and hooked up to the machine) but likely to have to do it all again tomorrow! Fortunately in a way, he is quite fuzzy and tired from taking all the extra medication for the pain but I have to admit to feeling a little despondent right now after the few days we’ve had and all he’s been through, we were hoping that this, at least, would be more straightforward! This is certainly a testing and challenging time!

 

My future life in one small bag

13^th August 2019 - 5 years ago

Good news - the stem cell harvest is complete!

After a slow start this morning, the machine and the lovely nurse who was looking after me all day managed to extract the required number of stem cells from my blood, 4 million for each kilogram of bodyweight, so 240 million stem cells.

The laboratory technician who has the task of counting the collected stem cells (not by hand, but with the aid of an advanced machine!) made it very clear first thing in the morning that not only did the blood test indicate that they'd only be likely to get just over half of the required amount today, but also that it's extremely rare that they get the full amount for anyone in one day.

Because they did manage to get enough stem cells today, we don't need to go back down to Plymouth tomorrow to repeat the process. Also, I don't need to have another GCSF injection, therefore there should be no new back pain, which is very good news indeed!

During the 6 hour harvest when I was unable to move at all, I asked my nurse endless questions about the process, the machine, stem cells themselves, etc., as well as us all chatting about our lives.

As the machine is very sensitive to the flow rate, I couldn't move my arms at all but had to stay very still. Cheryl was holding cups of tea and glasses of milk for me to drink through a straw, she even fed me a banana, a true sign of devotion as Cheryl can't stand the smell of bananas! I did feel a little like a monkey being fed by a zookeeper!

The staff on the ward in Derriford were all very kind and friendly and really made the day go smoothly for us. My nurse was almost jumping for joy at the end of the day when she was able to tell us that they'd got enough stem cells in the single collection. Since I'd asked so many questions, she also kindly wrote down some facts specifically for me to include in my blog:

Volume of blood processed: 11 litres
Times that my entire blood volume was processed: 2½ times
Total stem cells collected: 260 million (20 million more than the target quantity!)



The machine itself was fascinating, all sorts of tubes with blood, clotting agents or saline solution flowing through them, pumps pushing everything around at various rates, and a centrifuge doing the job of separating plasma, stem cells and red blood cells. Most of the blood was returned directly into my other arm, with the stem cells being stored in a bag, ready to be frozen until I get them back in a fortnight's time.

They say that I'll feel pretty tired for a day or two, so I'll look forward to putting my feet up tomorrow!

 

T minus 6 and counting

15^th August 2019 - 5 years ago

There's certainly lots going on this week - I hope that you're not fed up with the blog updates yet!

This morning I received a letter from my consultant with the formal results of the recent bone marrow biopsy. The proportion of the sample which was plasma cells had fallen from 70% (at diagnosis) to below 2% now - this is in the normal range and indicates a lack of myeloma, a "very good result" in the words of the consultant.

Following the very successful stem cell harvest on Tuesday, the two hospitals have put their heads together and sorted out for me to go in for my HDT and SCT a week earlier than expected.

All the timing is based around the day of the stem cell transplant itself - that's when they infuse my stem cells back into my bloodstream, a process that takes around an hour and is carried out in Derriford Hospital.

This is now scheduled for next Wednesday, 21^st August, which from now on will be referred to as 'Day Zero'!

Today: Day -6, the specialist nurse has gone through all the details (mostly side effects of the treatment) with Cheryl and myself, and I've signed consent for the HDT/SCT treatment.

Day -5 to day -3, I'll be hoping to catch up with as many friends and family as possible, as I won't see most of you for a month or two whilst having a very low immune system. Sorry to those of you that I don't get to see, we've got a week less time available now than expected! I'll try to fit in a few nice experiences as well, like paddling in the sea which I enjoyed today.

Monday 19^th August: Day -2, I will be admitted to Turner Ward in Torbay Hospital, have a PICC line put in for easy administration of fluids and drugs and also for taking blood for tests. I'll be given loads of fluids to get my kidneys operating at full capacity, and settled into a room.

Tuesday 20^th August: Day -1, I'll have lots more fluids and a 30 minute infusion of a chemotherapy drug called melphalan. I'll be given ice lollies to suck on to decrease the blood flow in my mouth which will help to limit the damage to the quickly dividing cells in the mouth which would otherwise be damaged, along with all other quickly dividing cells, by the treatment.

Wednesday 21^st August: Day zero, An ambulance will take me down to Derriford Hospital where I will receive back my stem cells, directly into my blood stream. The ambulance will then return me to my isolation room in Torbay Hospital.

From then on, it's a case of waiting for my stem cells to get into my bones and kick-start my bone marrow into producing new blood cells. There's all sorts involved in this, but I won't go on about it now! Suffice to say that I will be very closely monitored by the medical staff during this period.

I'll probably be kept on Turner ward for 2-3 weeks. Please do email me or phone me whenever you'd like to, it would be great to hear from you. If I'm tired or sleeping I won't answer the phone. Visiting will be very restricted due to my compromised immune system, so please don't expect to visit unless you've heard from Cheryl that I'm up to seeing you.

Once I'm home in September, and after my immune system has had chance to reestablish itself, I will be keen to see everyone again, but this may take a good few weeks.

David invites everyone up to Rob and Mary's at 7:30pm on Sunday evening to pray for Cheryl and myself, along with other needs. I'll have my laptop in hospital so will aim to update the blog from time-to-time, Cheryl will take over if I'm unable to do so!

 

Room with a view

19^th August 2019 - 5 years ago

I'm writing this from my private room on Turner ward in Torbay Hospital. Things have moved on a bit from a few years ago when there were posters everywhere telling you not to use your mobile phones in case they interfered with any of the medical machinery - now you're actively encouraged to use your mobile to keep in touch with friends and family, and they provide free WiFi. I've brought my laptop so I can easily text, email, WhatsApp, update my blog and maybe even do some coding!

Over the last few days I've been feeling remarkably calm about coming in to hospital for this second phase of treatment. This morning, however, I was filled with trepidation as the reality was upon us. It's not just the strength of the treatment, and its side effects, but also the possible future complications from such a potent course of chemotherapy.

Once we were here, I felt more settled and we were very pleased to be shown to my isolation room, which is light and airy with a view of the older part of the hospital building and some trees. We've since spent most of the day waiting for various staff members to, almost randomly, come through the door to take my observations, offer me cups of tea, put my PICC line in, bring me dinner (a tasty baked potato), set-up my fluid drip or tell me that I'll need to wee into a bottle so they can check my 'output volume'!

So, not much time to be bored, although we've not really felt like we know what's going on at any time in particular, and things often happen like the proverbial bus and after a long break, come along in threes.

The high dose of Melphalan will be administered via my PICC line around midday tomorrow, then I'll be taken down to Derriford for the stem cell infusion exactly 24 hours later, so midday on Wednesday.

Sister Sara has just been in to go through the details of all the fluids over the next 48 hours. Encouragingly, she doesn't think I'll feel too bad when the Melphalan is given, or even for a couple of days afterwards.

 

Poison or cure?

20^th August 2019 - 5 years ago

A quick update - I'll write a few this week as so much is happening!

I had quite an interrupted night with nurses coming in to change fluids, do my observations, take blood, collect bottles of wee as I filled them (sorry, is that too much information?!) - so I was pretty tired and groggy in the morning, also with thoughts of the day ahead. After breakfast, some laps walking quickly round the room (that's what has become of my exercise regime!), and a cup of tea, I felt better.

I also started to think of the high dose of chemotherapy less as a poison with potentially nasty side-effects which may cause long-term damage to parts of my body, and more as a medicine which will kill off any remaining myeloma cancer cells in my body to give me a longer period of good health. That's what the doctors have been saying from the start!

They quickly got on with giving me loads of fluids and some pre-meds, then the Melphalan itself. All went well and I've been feeling fine apart from my back is rather sore (in the normal place) and I'm very tired.

Cheryl has been here all afternoon and evening which has been great as the nurses mostly left me alone after the excitement of the treatment was completed.

Turning in to bed now and hoping for more sleep than last night.

Thanks for all of your messages of encouragement to Cheryl & I.

 

Job done

21^st August 2019 - 5 years ago

The stem cell infusion went to plan today in Derriford, I was very happy to welcome 120 million of my stem cells back home into the warmth of my body after their week stored in liquid nitrogen at a chilly -190°C.

I now smell of sweetcorn, thanks to the DMSO additive which protects the cells during the freezing process.

I've been extremely tired since getting back to my room in Torbay tonight and am now off to bed!

 

Difficult week

24^th August 2019 - 5 years ago

I'll keep this update brief as it's been a hard few days and I'm tired and a little nauseous.

I've been resting a lot, sleeping OK but waking more or less each hour to turn over, have a drink or wee in a bottle. Sometimes all three, if I fancy the excitement. I'm not napping much in the day, but do tend to lie down often to ease my back pain. In fact, I've been rather fidgety, moving from chair, to bed, to walking around the room, and so on.

The doctors seem happy enough with my physical state and progress, it's unclear how much worse I'll get in the next week or so as people experience the side effects differently to each other.

Cheryl has spent much of the day with me, every day, which has been a great comfort and support. Clearly it's very difficult for Cheryl to settle with leaving me here at night and for the mornings by myself, and we always look forward to seeing each other.

The nursing staff, day and night, have been wonderful. Really caring, friendly and helpful. Of course, sometimes they're busy with other patients and you have to wait to be seen, but they are very happy to be called on and really show genuine care.

Thanks for the cards, emails and phone calls - they do lift both myself and Cheryl.


The Stem Cell Transplant day itself, Wednesday 21^st August 2019, is known as Day Zero.

Day 1 - Thursday

The day following the transplant, I woke up to eat breakfast but had a wave of nausea which caused me back pain from the muscles pulling uncontrollably against my bones. Unfortunately this pain has persisted and I'm still needing pain relief for it several days later.

I didn't eat much and felt pretty ropey all day.

Day 2 - Friday

The anti-nausea medicine helped me through the night and the day, I still didn't eat much.

Cheryl & I went for a walk around the Rose Garden which is close to this ward. I'll be allowed out of my room until my white cell count drops, which is expected to happen in the next few days. The movement seems to help my back.

The nurse gave me a muscle relaxant to help my back overnight.

There was a lot of excitement amongst some of the staff as Boris Johnson had visited the hospital, and in fact walked around the Rose Garden just after us!

Day 3 - Saturday

I felt sick at breakfast time, managed a biscuit and a high-protein drink. I did then eat, over the course of an hour or so, a nice portion of vegetable lasagne for lunch. Very tasty, and I was glad to finish a meal. I've not eaten anything much since, I couldn't face dinner.

 

Neutropenia

27^th August 2019 - 5 years ago

We've been trying to think of the album that sounds like 'Neutropenia', but can only think of The Who's 'Quadrophenia'. Answers on a postcard please!

There's been a few ups-and-downs over the last couple of days, we're still living hour-by-hour.

I am now, officially, neutropenic. Since it's a new word to many of us, it simply means that the number of neutrophils in my blood stream is very low. Neutrophils are a type of white blood cell, a key component of our amazing immune system, and the first responders to attack invading bacteria. My total white cell count from the blood they drew at 6am this morning is 0.3, normally it would be between 4 and 10.

Don't fret! I know I didn't put any units with those figures, that's just to simplify it as there's different ways of explaining it. The actual count is 0.3x10⁹ cells per litre of blood. There, I'm sure you all feel happier now.

The aim of the high dose chemotherapy was to kill off my bone marrow, meaning that I am no longer able to produce any blood cells (red, white or platelets), that aim has now been achieved. I expect that as I type this, my white cell count has reached zero.

This paves the way for the second aim, the engraftment of my lovely stem cells which are already flowing all around my bloodstream and hopefully making a new home in my now marrow-depleted bones. The white cell count should start climbing again within 2-5 days, no-one is quite sure how long it will take as everybody's body is different.

One of the lovely nurses from the Ricky Grant Day Unit who helped with the early stage of my treatment came to see me today, it's great to have encouragements like this. A friend of hers has just been diagnosed with myeloma, he's a similar age to me, so I may be able to offer him some support. Another nurse, from Turner Ward but who's working on a different ward this week, also popped in to see how I was getting on. The level of care is very encouraging.

I've felt much brighter and more myself today, but also started to feel weak and light headed since this morning. The nausea is milder and I've eaten three-quarters of two hot meals today, along with some snacks. I am tired, but fairly relaxed. My back pain has been OK most of the day, but got really bad this evening, spreading around into my sternum which was quite uncomfortable. They've given me some Lorazepam to ease my back pain at night for the last 2 days, and are also giving it to me to help with the nausea.

As an indication of how much better I was feeling, at 5:45pm I buzzed for a nurse, just to ask if dinner was on it's way! Normally it arrives around 5pm, and normally I see it as a form of torture to try to make myself eat something. This is no reflection on the hospital food, which, if you order the right thing, is very tasty. My lentil and vegetable curry arrived soon afterwards, to my immense joy.

It's hard to know how hard this 'dip' will hit me, how much fatigue and pain I'll have, and if I'll get any infections. We are, of course, worried about the next week or so, but also hopeful that I'll get through it without too many difficulties.

Cheryl & I are enjoying playing a game in the evening before she has to head off for home. It's a far cry from being on holiday, but at least we're making the most of every opportunity.

 

The Neutropenic Dip

1^st September 2019 - 5 years ago

I'm writing this on Sunday evening to cover the last 5 days, I'll splurge (thanks for the word Andy) it all in one big update - you may want to grab a cuppa and find a comfy chair...

I've been very tired and in quite a lot of pain, once more living hour-by-hour.

Absolute zero

Yes, OK, I'm still thinking about all the fun you can have with liquid nitrogen... However, nothing to do with incredibly low temperatures, but on Wednesday my overall white blood cell (WBC) count dropped to zero. It feels a bit weird knowing that your body is missing something so vital. I was eating OK, and weighed in at 59kg.

On Thursday, my WBC count was still at zero. They take my blood at 6am every morning so the doctors have the figures ready for the ward round. My lower back became very painful, my stomach was also pretty painful, my gut clearly not happy and I was off food.

Feeling hot hot hot

At 4am on Friday, I was feeling cold when the friendly nurse (an Essex girl who's retired and then come back again) came to do my obs. (blood pressure, blood oxygen saturation, pulse, temperature, etc.) My temperature was high at 38°C, it should be around 36.5°C. She whipped the blanket off me leaving me under just a sheet, I complained as I was feeling chilly, but she explained that I felt cold but was actually too hot. I was started on IV antibiotics and paracetamol, and put onto hourly obs. By 7am my temperature had dropped below 37°C so everyone calmed down a little. They sent lots of blood samples off for various tests and will keep me on IV antibiotics for 4 or 5 days.

My back pain was a little better, but I was still needing some extra OxyNorm from time to time, I was still off food, and my gut was really not happy. I'll spare you any further details.

Hair today, gone tomorrow.

I started off on Saturday with a high temperature early in the morning, this quickly dropped with similar treatment to the day before. I was starting to feel more positive and focused on getting better, I forced myself to eat more and my gut responded well. My count was still at zero and my lower back much better, I was more aware of the pain higher up in my back.

Knowing it was going to happen at some point, I took hold of a clump of hair on my head and tugged lightly - it came out with no resistance. Whilst I've said all along that I'm not worried about my hair falling out as it's not painful, it does feel really strange when it just all comes off in your hands.

The re-emergence of the old-man-chair

Aside from Joey and Chandler, you've probably never thought that the sight of an armchair could bring a tear to a grown man's eye! After lengthy negotiations with the consultant and sister, we gained approval for me to have my fireside armchair to sit in. It's very hard to explain the depth of feeling felt when sitting in a chair that supports my back and is comfortable after 2 weeks of only being able to sit in a chair for 10 minutes or so without being in pain. My aim is to stay out of bed longer in the day to prevent my back getting so painful.

At the risk of another round of backlash about my sexist comments, we're very grateful to our strapping-lad friends Phil & Andy W. who transported my armchair from home to my room on the ward. We're equally grateful to Emily, Helen and Anja for giving our house a deep-clean to limit the infection risk on my, hopefully imminent, return.

The path to recovery

This morning, Sunday, my WBC count was up to 0.3x10⁹ cells per litre of blood! Whilst above zero, that's pretty low, and I've still got no neutrophils, so really it's a case of waiting for tomorrow's results. However, it was evident that the consultant and sister on the ward round saw this as the turning point, the restarting of my bone marrow function and the beginning of my path to feeling better.

I didn't get much sleep overnight, but had been feeling positive when awake at night - walking round the room for exercise, but clearly am very encouraged to think that I'm now over the worst of the effects of the treatment, and should start feeling a little better each day.

I ate all of my lunch and invited my lovely Cheryl to join me for dinner (which she had to buy first!) It's our first experience of a ready-meal, that's all they'll let you microwave here. It wasn't a patch on any of the lovely home-cooked meals that our friends have filled our freezer with, but it was great to eat a meal together.



Sorry for the lack of photos - I've got some stored up for a future update! Thanks again for phone calls and messages of love and encouragement, it's so helpful to feel lifted up by friends and family at this time.

 

On the up

2^nd September 2019 - 5 years ago

Good news - my white cell count has been slowly rising, from zero, for the past couple of days. Yesterday some neutrophils showed up, and today there's twice as many, 0.4x10⁹ cells per litre of blood.

This means that the stem cells have definitely engrafted and kick-started my bone marrow to start producing blood cells again. My red blood cell and platelet counts are rising as well. A few days ago I needed a transfusion of platelets, it was made up from 5 individual people's blood donations - more people to be grateful for.

I've still been in a lot of pain with my back, and now my neck, but have otherwise been feeling positive and well. I've stopped taking anti-nausea medicine and am generally eating well.

The doctors are talking about me going home for the weekend, Friday seems likely - I'm certainly more than ready to be at home to continue my recovery in more relaxed and comfortable surroundings. It will be great for Cheryl not to have to come out to the hospital every day to see me, although she is understandably worried about having the sole responsibility for keeping an eye on me while my immune system is still so low.

 

Colour is its own reward

7^th September 2019 - 5 years ago

After much toing and froing, the doctors released me mid-afternoon yesterday to go home for 'weekend leave', needing to return early on Monday morning for blood tests, and then hopefully to be fully discharged.

My neutrophil count had gone down a bit on Friday, so we were surprised they were happy to send me home, I'm classed as having, 'severe neutropenia'. Both Cheryl & I felt quite nervous due to the risk of me picking up an infection. It feels very strange leaving the protective bubble of my isolation room that I'd mostly been confined to for 2½ weeks, to go out into the big wide world.

Being at home has been wonderful! Tasty, hot food, freedom to do what we like, when we like, and something I hadn't considered - colour! My hospital room was light and airy, but very bland, whereas our home is full of bright walls, paintings, photos, plates, mugs and numerous other things. Life seems much fuller with colour and freedom! It's lovely for Cheryl & I to be together, rather than Cheryl visiting me each day.

One thing that has really helped me stay sane during my stay in hospital is daily phone calls from Cheryl's Mum and our friends Phil & Tracey, it really lifted my spirit to hear caring voices and share what was going on in the outside world. Another key tip for anyone facing a long hospital stay (in a private room) - take a decent WiFi speaker, podcasts (thanks David!) and music for every mood, as well as the radio, it's all so easy from your phone these days.

Thanks to Darren for collecting my old-man chair from my hospital room and returning it home, and to Darren, Chris H. and Rupert for moving the bed settee out of the spare room so Cheryl can have a more comfortable bed for however long is needed until I can return to our own bed.

 

Home and dry

9^th September 2019 - 5 years ago

Good news - my white cell count, and the all important neutrophils, are nicely up as of the blood test on the ward this morning, at 2.6 and 1.1, respectively.

I'm still classed as neutropenic until the neutrophils get above 1.8, which will hopefully be by the end of this week. My platelets are still a bit low, so they've left my PICC line in in case I need another transfusion, but hopefully they'll start building up by themselves soon.

My consultant is doing ward rounds this week, she was pleased to discharge me and send me home. I'm pleased that I'd had the weekend at home already, so feel confident that it's the best place for me to now start the process of recovery from the High Dose Treatment and Stem Cell Transplant. As many people have commented, the treatment makes you feel worse than the cancer, but it's purpose is clear - to give me freedom from the disease.

My aims this week are to rest, to exercise (we've walked round the mini-block for the last 2 days) and to start to put back on the 4kg of weight that I've lost during the last 3 weeks. Thanks to Claire G. for cooking us some more lovely meals, I know that they will help with this aim!

I still need to be very careful about infections, but can hopefully start to relax now that we have real time at home. I'm not due to return to the hospital until next Monday for a blood test as an out patient.

 

Settling in to recovery

16^th September 2019 - 5 years ago

This morning I had some blood tests on the outpatient ward to check on my progress since coming home last week. Unfortunately, my neutrophils had dropped from 1.1 to 0.5, meaning that I'm still 'severely neutropenic' and need to be very careful about infections. My platelets are stable at 50, but need to rise to 100 before they'll take out my PICC line.

Clearly these results were very disappointing, but the specialist nurse cautioned us not to worry as it's normal for the levels to fluctuate as the body needs time to recover and start generating blood cells in good numbers again.

I don't know if all my bones now have functional bone marrow, or if only some have restarted. I did speak to Myeloma UK who confirmed that it can take time to get the levels up again. I need to be patient.

It's been a difficult week emotionally as I've still had a lot of back pain and have been fatigued. We're also feeling the weight of uncertainty over how I'll be over the next couple of months during recovery from treatment, and how defeated the myeloma is.

I was a bit low mid-week as I've been finding it very hard to put on any weight, but this is now slowly happening. I've got a good appetite and we are eating 2, if not 3, cooked meals a day.

It's been great to catch up with people in person and on the phone, it helps to lift us when we feel bogged-down in our situation.

I am determined to get better and am being uncharacteristically sensible in various situations to avoid infection risk or to give my body time and space to heal. Since getting home, we've enjoyed walking every day, normally 2 half-mile walks round the 'mini-block' which is quite hilly, the last two days we've progressed to the full block, which is a 2-mile route. I'm feeling pretty good in myself, getting stronger and clearer of mind.

 

Slow but steady

23^rd September 2019 - 5 years ago

For those of you who never thought I'd take up vaping - you're right, but I did inhale a lot of vapour from a nebuliser this morning, it's to protect against chest infections.

I've always been nimble and quick rather than slow and steady, but my blood counts are proving rather sluggish in their ascent from zero. I had a full blood count this morning at the hospital (in a very quiet ward following their overnight IT blackout!) which showed that my neutrophils had risen from 0.6 last Wednesday to 0.9 today. My total white blood cell count has risen from 2.5 to 2.7 in the same period.

The specialist nurse seemed surprised with the the slowness of these increases, but not too worried, and indicated that the doctors are happier than she is as I'm looking and feeling so well. So, they're not going to check my bloods again until I see my consultant in 2 or 3 weeks time.

My platelets had also risen slightly from 60 last Wednesday to 72 today, so they were happy to remove my PICC line as they don't expect me to need any further platelet transfusions. Several of the nurses have commented to me that they weren't keen on PICC lines when they were introduced as they are a bit 'barbaric'. They use a metal clamp which springs out inside your arm perpendicular to the line to keep it in place. The only problem is that it can be rather 'uncomfortable' when the line is being removed. I did have to grit my teeth, but the very experienced (and slightly insane!) nurse eased it out without me screaming in pain! I was going to title this update, 'The end of the line', but thought this sounded too terminal!

Over the last week I've been feeling generally well, my back pain being the only real problem. I've needed to lie down for an hour or so most days, and am sometimes pretty tired, but not badly fatigued. I'm enjoying being more active around the house, and we've had some lovely long walks in the autumn sunshine. I've not yet progressed to doing any gardening or using the exercise bike - maybe next week!

We find ourselves constantly grateful to have friends visiting and also meals cooked for us while I'm still low on energy and Cheryl's busy looking after me.

 

Sensible and normal

7^th October 2019 - 5 years ago

Several people have asked me how I am as it's been a while since my last blog update. Things have been going well, I feel a tiny bit better each day and am slowly putting on weight (at an average rate of 50g per day). I continue to feel well in myself and haven't had any infections. My back is still achey a lot of the time, but manageable. I've halved the dose of the slow-release morphine patch from 10 to 5µg/hour and my daily paracetamol intake from 8 to 2 tablets.

Cheryl's back has been giving her some concern and she's had tingling in her legs, feet and hands. She's seeing the doctor, her osteopath and a physio to see what can be done. We're both sleeping better, but are still in the spare room for the time being.

Yesterday I enjoyed doing a little gardening, but I've not been on the exercise bike yet. We're having a good walk most days. I've not really felt that there's been anything 'interesting' enough to write in an update, but I guess it's not all about blood counts and treatment plans...

Blood tests and treatment plans!

After two weeks with no hospital visits, this afternoon I saw my consultant to discuss how things are going since I was discharged. The specialist nurse, who has been taking charge of my treatment, joined us. We were very pleased to hear that my blood levels are on the up!

Neutrophils: Risen from 0.9 two weeks ago to 1.7 today
Platelets: Risen from 72 two weeks ago to 170 today

Haemoglobin levels are also good, so things are gradually getting back to normal. Everyone in the hospital seems to think that I'm looking really lively and well. We went up to Turner Ward to thank the staff for looking after me with such genuine care during my stay.

They've taken some more blood today so by the end of the week I'll have the paraprotein level which will show what the myeloma is doing, hopefully it's been kicked into touch (seems appropriate during the Rugby World Cup to use such a phrase).

Tomorrow I'm heading back to the hospital to restart the monthly bisphosphonate bone-strengthening infusions. I'm glad about this as I hope that it will speed the recovery of my damaged vertebrae.

Contrary to all expectations, I continue to be sensible in most situations, looking after my body and not overdoing things or expecting to recover too quickly. At the same time, I am very keen to get stronger and more able so that I can be more useful to Cheryl and others around me, and to enjoy more aspects of life.

 

The search for paraprotein

31^st October 2019 - 5 years ago

At last I'm enjoying the recovery stage, feeling much more like my old self, more active and having more energy. I'm learning that getting over the HDT/SCT is a very gradual process, they say it takes 3-6 months, which I thought I'd do in 3-6 weeks, but I think it'll be more like 3 months.

I've been on the exercise bike for 10 minutes several times in the last fortnight, and am able to do other things to feel more 'normal' again. We had some good friends over for dinner last week, it was nice for me to be able to cook a meal rather than resorting to a take-away. It was nice for them too as it was so tasty! We're collecting our 'nices' from school 2 or 3 days a week again and cooking dinner for them (and trying to squeeze in helping with homework, practicing lines from plays, giving impromptu science lessons, etc.!) We're very fortunate to live in Newton Abbot with its two rivers, I've really been enjoying walking along the beautiful Teign and the lively Lemon (very much so with all of the rain at the moment). It's an amazing feeling to be striding out by myself on a quiet path, half an hour from home, whereas a few months ago I felt daunted by walking across the room.

Since my mind is now back on track (this can be scientifically monitored by measuring the number of bad jokes formulated per day) I've been reading a lot and also spending time programming, a little work but mostly just for the enjoyment of it, the end results including a JavaScript version of PacMan (much of this was done with Code Club earlier in the year) and something called Shape Invaders. It's good to have things like this to focus on.

My back is still pretty achey at times during the day, requiring me to lie down, I've had slightly conflicting views from doctors and nurses about how likely it is that the damaged bones may recover to the point that the pain will lessen. I am doing lots of stretches from various physios and being as active as possible with the aim of strengthening my back and getting more confident with all sorts of movement. Myeloma UK have produced a very thorough booklet about pain caused by myeloma. I'm concerned about the possibility of damaged or fractured vertebrae.

What about the paraprotein level?

Well, when I saw my consultant 3 weeks ago, she expected to have my paraprotein level, but the lab hadn't been requested to do that test from my bloods, so they took some more that day. They only do the protein blood test on a Thursday in Torbay Hospital, so the specialist nurse phoned me a few days later to give me the result, but it appeared that the lab had been unable to successfully run the test. More blood was taken and the test repeated the next week. Last Friday the nurse phoned and said that the lab again said, "Regret, paraprotein level could not be determined from background." She said this lack of a result happens from time to time. I asked if the wording could be interpreted as saying that the test was completed, but there wasn't enough paraprotein to record a result. She wasn't sure, but checked with my consultant on Monday and phoned me back to say that this was indeed likely. I spoke to Myeloma UK who also thought that was the meaning. This, then, is very good news as it shows that the myeloma is not producing paraprotein at a noticeable level, meaning that I've had a very good response to the treatment. I expect to have a blood test at the 100-day point (28^th November) after the stem cell transplant, at which time my consultant will hopefully determine my official response to treatment.

The fact that there's no detectable paraprotein, is, presumably, very good news. It's been presented in such a strange way that I don't really feel able to 'accept' it, I need to talk to my medical team to see what it means. I'll see my consultant in a couple of weeks. However, it does seem a very positive result, the fear was that the level would have risen from the 2g/l that it was before the hospital treatment.

I always think I'll keep these updates to a few words, but then the waffling happens!

 

A pain in the back

11^th November 2019 - 5 years ago

When I wrote, "At last I'm enjoying the recovery stage", I was perhaps a little hasty. A few days prior to that I'd had a painful lower back overnight. I'd hoped that this would pass in a few days, but it has become a rather constant issue overnight. I wake around 3:30am with a painful back which is usually resolved by turning over. This is then repeated each hour until I get up. So, I'm getting a bit tired, and going to bed at the end of the day has the expectation of a disturbed and painful night.

My upper back pain is also pretty constant through the day, previously it had eased off somewhat. This pain spreads around the side of my chest and sometimes right to the front. Taking a deep breath is painful, but much less so than with a cracked rib. I also have what feels like light bruising around the vertebrae in the small of my back. I get some tingling or mild numbness in my right thigh, presumably from an aggravated nerve which I hope will settle down by itself. I continue to do stretches advised by the physios.

All of these pains combined are a little frustrating to live with, but also make me worry about the underlying cause. I know that my bones were all damaged by the myeloma, and I am being very careful to rest and not to lift anything heavy or move in ways which could cause further injury.

Myeloma UK have been very helpful on the phone when I've needed to talk about the pains that I have and how to manage them. Their 'Ask the nurse' service is brilliant when you need some advice or reassurance.

The medical team at the hospital are arranging for me to have an MRI scan to determine the actual damage to my bones. They suggest that this may put my mind at rest - that will rather depend on what it shows!

I've upped my paracetamol intake, which I had managed to get down to zero, to 3 a day, and I often need to lie down in the afternoon to ease my back.

I'm still walking or going on the exercise bike most days, but am feeling less confident and more anxious about such activities.

Next Monday I'll see my consultant to check on my progress and see if there's anything they can suggest for the bone pain. Cheryl's Mum once more is in the same clinic, she had 3 CT scans last week and is waiting to see how they're planing to treat the recurrence of her lymphoma. Cheryl will try to be in two places at once again.

Of course I'm really pleased to have had such a good response to the treatment, and really feel that I'm almost recovered from the side-effects of the chemo. I'm determined to get better, to stay positive, to make the most of life, and am doing everything I can to this end, including being patient. However, the reality of ongoing pain and lessened physical ability is wearing.

So we're feeling rather weighed down and are definitely ready for some relief. I'm glad that we're performing our 'normal' weekly activities, we even made it to church on Sunday for the first time in about 6 months. We continue to be lifted by visits and phone calls from friends.

 

Ups and downs

21^st November 2019 - 5 years ago

I wish that title was about me cycling in the beautiful Devon hills, but sadly I've not yet progressed from the exercise bike to the real thing.

The graph shows an approximation of how active I've been during the year. It's sobering to think that this journey with myeloma started exactly a year ago when I cracked a rib, after what was my most fit and active year ever.

We saw my consultant on Monday afternoon, Cheryl was called out during my consultation to go next door to be with her Mum who was once more in the same clinic and is due to start chemotherapy today for her lymphoma which has relapsed. Cheryl has a lot on her plate at the moment. Her Mum is pleased to be going back on a traditional treatment, as the tablet-based maintenance chemotherapy wasn't working for her.

My neutrophils are still playing about, they've gone up from 1.0 to 1.5 and now down again to 1.3 x10⁹ cells per litre of blood. My platelets, haemoglobin and other levels are all stable in the lower part of the normal range.

The good news is that, once more, and now confirmed by my consultant in person, there is no detectable paraprotein in my bloodstream. Wahoo! I asked if I'd have a blood test at the hundred day mark to record the official response to treatment, but was told that they're not that rigid here. Of the six defined responses to treatment, I was expecting to have, 'Very Good Partial Response', but think from the results that I have one better, 'Complete Response'. There is one response better than this which it is possible that further tests could show if I have attained or not, 'Stringent Complete Response.' It would be nice if my response was stated officially at some point.

My consultant is very gentle and kind, but not very proactive when we're talking with her. The whole haematology team discuss my treatment, with input from Derriford in Plymouth, and I am confident that my actual treatment would have been the same regardless of which consultant I was under. However, I am frustrated that I don't feel that I have the best advice or knowledge from my consultant. I asked her this week if there's a physio attached to the haematology or oncology department, she said, "I don't know, I'll find out." Last time I saw my consultant, I asked specifically, "Is it OK for me to go running?", she said, "Yes." We then went next door with the specialist nurse to make an appointment, and before we'd even sat down, she said, "Don't go running!" So, when I'm asking my consultant about the specific cause of various areas of pain in my back, along with tingling sensations in my right thigh, and about activities that I can safely undertake, I'm not as confident as I'd like to be about the advice she's giving me.

Anyhow, now I will wait to see her after my MRI scan which is set for Saturday 30^th November.

Whilst my lower back pain has improved and I've been sleeping better, I've been frustrated by continuing back pain and, on the advice of my lovely nag-nurse (no, I'm not talking about Cheryl!), have upped my paracetamol back to 6 a day. I'm still on the BuTrans patch.

Some good friends of ours have bought several items of Ikea furniture for their bedroom, I've enjoyed helping them to put it all together over the last few days. The logical task of piecing all the parts together suits me, and it's been very encouraging to be able to do something helpful and physical, even if I avoid any steps involving lifting.

I'm finding that I get tired out by the evening if I've been active in the day, I'm beginning to believe friends that say this tiredness from the chemotherapy can last a long time!

 

Scan the man

7^th December 2019 - 5 years ago

Last Saturday I went to Torbay Hospital for an MRI scan of my spine and pelvis, I'll get the results when we see my consultant this coming Wednesday. Hopefully it will give some clarity as to the state of my vertebrae and help me to know how active I can expect to be.

Whilst many people have MRI scans for all manner of injuries or ailments, it was all new to me. The machine is similar to the CT scanner that I experienced back in March, but the tube you're slid into is much smaller. The process of generating the strong magnetic fields used by the scanner is very noisy, so they give you ear plugs to block out the noise. They also offer you headphones to listen to the radio.

The main difficulty for most people is the feeling of being confined in such a tight space. I'm not claustrophobic (unless that means an aversion to Father Christmas?) but was still a little anxious about being a few inches away from the roof of the tube for 40 minutes. I was also unsure that I'd be able to lie on my back for that long as it's normally a painful position for me. They helpfully allowed me to get up and walk around in-between the two scans.

I found it interesting being in the scanner with its loud, rhythmic buzzing, intermingling with the Top Ten from, 'This day in 1988'. They put a mirror above your head so that you can look out beyond your toes to the scanning room. I found it best to close my eyes and imagine that I was lying by a lake in the sunshine. A lake, that is, surrounded by very large, buzzing insects and some boomer's kid listening to their ghetto blaster (sorry for the mixed generational stereotypes! (and the pun in the apology!))

I felt a bit spaced out after the scan, but then felt really good for the few days afterwards, partly as it seemed a positive step to have the scan, and partly due to the beautiful, frosty weather which inclined me to enjoy an early morning walk up the hill each day this week (there's another, unintentional, pun there if you look hard enough!)

My night-time lower-back pains have returned to some extent and are interrupting my sleep, but the tingling in my leg (and sometimes my back) seems to have lessened a little, as has the aching in my upper back. I've been enjoying walking a lot, and generally feeling able and positive, but also sometimes very tired and frustrated with the continuing pain. I normally need to lie down for half an hour in the afternoon to ease my upper back. Thank goodness for the BBC Sounds app!

We've been enjoying good times with friends - sorry if there's always a lot of medical talk!

I'll update the blog later in the week when I get the results from the MRI.

 

Black and white

11^th December 2019 - 5 years ago

This afternoon we met with my consultant, and the specialist nurse, to review the results of my recent MRI scan.

Firstly, she explained that there don't appear to be any new lytic lesions (the small holes that myeloma has caused in all my main bones). This is expected as the disease is now dormant, but the confirmation from the scan is welcome.

She showed us the images from the scan on screen, you can clearly see that 3 of the vertebrae in my upper back (thoracic vertebrae - those that support the ribs) are a little compressed. The curvature of my spine is exaggerated, and the consultant asked if I've lost any height (I haven't noticed this, but there might be a slight effect). There appears to be no damage in the small of my back where I have some tenderness and pain, and a visible compression to one vertebra in my lower back where I often have pain at night. The MRI scan of my pelvis shows no issues.

Myeloma UK have a booklet about myeloma bone disease. This includes the diagram below which shows a compression fracture in a vertebra.



We are being given the impression that this sort of damage to the spine does not heal by itself. I have previously read about treatments for compressed vertebrae which involve injecting bone cement into the damaged vertebrae to strengthen them, and possibly also correct their size and shape. I mentioned this to my consultant, but she thought that this technique isn't very effective in the long term.

She is going to refer me to a back specialist in London to see if they would consider me for spinal surgery to fit metal plates to strengthen areas of my spine. I explained that whilst I'm happy to be referred, I would be concerned about the risks of spinal surgery. She commented that such surgery can be, 'high risk'.

Over the last few weeks, whilst still in some pain during the day and night, I've been feeling more positive, more able and more relaxed. It's a bit of a blow to see the damage to my back in black and white on the consultant's screen, and to realise that we might be going into another phase of hospital visits and treatment. Of course, we need to hear from the specialist before we really know what is likely or possible.

My blood counts continue to improve and I am now, for the first time in months, officially not neutropenic. I asked what response to treatment I have attained, my consultant confirmed a, 'Complete Response'. This, again, is as expected, but is very good news. We asked about levels of activity, they're pleased that I'm walking so much and encourage this, and swimming, but weren't so sure that cycling would be a good idea.

Cheryl and I are worn down by getting through the treatment and coping with my pain over the last 9 months. I'm sure that you can understand that we feel very troubled after discussing these results today.

 

A week of news

21^st December 2019 - 5 years ago

It's been a busy week in many ways! I'll mostly stick to the medical updates -

Monday: I received a reply from my consultant to an email I'd sent with 7 questions following last week's meeting to discuss the MRI scan of my spine. She confirmed that 3 of my thoracic vertebrae have "mild wedging compression fractures", the word, 'mild', is welcome to see. The damage to the painful area of my lower back is, apparently, "almost normal". My consultant also sent me the image from the scan which shows the damage to my spine, I've included it for your perusal. The rectangular 'chunks' are vertebrae, with spinal discs separating them. I've always had a bit of curvature at the top of my back, but it does seem quite pronounced in the image, inline with the 'wedging'.

Tuesday: My consultant rang to tell me that the Royal National Orthopaedic Hospital in London would like to see a CT scan of my spine before assessing me, so I should expect to hear from radiology in Torbay in the next day or two.

Wednesday: All was quiet... We greatly enjoyed going to Heidi's last Christmas Show at her primary school.

Thursday: At 3pm, radiology in Torbay phoned to ask me to come in for a CT scan at 5:40pm. We were just driving to the hospital to pick up Cheryl's Mum from her 5 hour chemotherapy infusion, so we took her home, had a very quick cuppa and went directly back to the hospital for the scan, which was quick and straightforward.

Friday: The Royal National Orthopaedic Hospital phoned to ask me to attend a spinal clinic on Monday 30^th December. They seem to move things along quickly.

In the last week, I've enjoyed 4 walks around my favourite local route, the Lemon Loop, each with different company. It's so good being out (in the rain!), as well as getting some work done, being active around the house (cooking and washing up, not DIY or craft projects in the garage). My pain levels seem fairly constant, my upper back is pretty achy in the afternoon and evening, and my lower back sometimes achy at night. I get some tingling and mild numbness in my legs and back if I stand still for long. Fortunately, I've never been one for standing still!

All of this feels like a long journey. If it wasn't for the damage to my back and the resulting pain, I'd be planning all sorts of expeditions, adventures and experiences to make the most of life now that the cancer is dormant. I am changing my mindset from being, "someone being treated for cancer", to, "someone being treated for a back issue".

I'll not expect to update my blog again until we've seen the specialist in London, so I wish you all a very Happy Christmas!

 

Getting plastered for the new year

30^th December 2019 - 5 years ago

Yes, it's true that I've done many new and different things this year, so joining those out on the town for New Year's Eve could make a change from our usual evenings of games with friends. However, you'll not be surprised to hear that this, like so many other of my new experiences, is a medical procedure.

Yesterday, Cheryl drove us up to Watford where we stayed in a nice hotel close to the Royal National Orthopaedic Hospital. Today's appointment was mostly encouraging, although as with this whole experience, many questions are left without a clear answer.

The Doctor was able to view and analyse my scans in detail, it was good to discuss this with an expert and to understand more about the extent of the damage and the present condition of my bones.

They don't want to perform any surgery, which is a big relief.

The doctor was in two minds about recommending an external brace to support my spine for a period of 3 months whilst my vertebrae continue to heal. Really, this sort of brace would have been very useful when I was first diagnosed with myeloma as it could have prevented the fractures to my vertebrae. However, it would seem that there's little awareness of the usefulness of braces in this situation.

They quickly got me over to orthotics to have a Plaster of Paris cast made - you can see from the photo that they put me in a head-to-toe stocking, then wrapped strips of plaster around me. It had set within 5 minutes and they quickly cut it off. Being an exothermic process, the cast was pretty warm which felt comforting, this offset the strange tightness when taking a breath with a fixed cast around all of my torso. I'll have to get used to this as the brace will feel similar. I will wear the brace all day, but not at night. The aim is to keep my spine protected and keep weight off of it, including the weight of my head, so the brace goes right up to my chin.

We're going up to Watford again next Monday to have the brace fitted.

The Doctor was very clear that this is a precautionary measure that we could choose not to have as my bones have "90% healed", but he recommended undergoing some discomfort now as a favour to my future self. He could see the good effects of the bisphosphonate bone strengthening treatment that I'm having. Some of the damaged vertebrae are fusing together which is viewed as a good thing as they'll be less likely to suffer further collapse, and there's only some loss of bending flexibility.

He thought that I shouldn't be doing any bending, twisting or lifting at all. Hmmm, I've been doing quite a lot of bending and twisting of late, whilst still avoiding lifting. The brace will limit my freedom of movement in these ways.

Neither the scans, or a quick physical examination, gave the Doctor any insight as to what's causing my lower back pain, or the feeling of bruising in the small of my back, although he did identify a Schmorl's Node which is unrelated to bone damage from myeloma.

So, we're mostly pleased that the bones are healing and there's no imminent risk of further fracture. The brace is an inconvenience, but will hopefully ease my current pain, and even-more-hopefully reduce my onward pain once I stop wearing it in 3 months time.

 

Brace yourself!

9^th January 2020 - 5 years ago

Cheryl drove us up to Watford again on Monday for me to have the spinal-support brace fitted and adjusted on Tuesday. The idea is that I'll wear it all day for the next 2 or 3 months, but not at night or while I'm laying down.

The brace is made of a sheet of moulded plastic, shaped around the plaster cast that they made last week. It's lined with a soft foam and has a little give in it, so breathing doesn't feel constricted. The main issue is that as it comes right up to my chin, to take the weight of my head, it is quite unsettling to wear.

I was surprised to see that there are 2 straps on each side and two on the shoulders, I asked if I'd be able to put it on by myself, and was told, "Not really". Well, being stubborn, I've found that I can manage it by myself now that I've practiced a bit. I'm probably not going to wear it whilst eating, so am glad that I can put it on and take it off in a couple of minutes.

Yesterday was busy, so I only wore the brace for an hour, but have been wearing it all morning today. My upper back feels quite uncomfortable, possibly as I've not been able to move it at all for the last 2 hours as the brace fixes its position. Hopefully the bones are having a little holiday from their full weight-bearing role, and will be able to heal more fully.

I'm not able to move my head up-and-down, or side-to-side, so won't be able to perform normal activities, no walks in the woods or other rough terrain as I can't see my feet! Making porridge was achievable, but I don't think I'll be cutting up vegetables, I might end up with severed fingers!

I've had a mild cold the last 10 days, and have been left with a cough. Whilst I'd rather not have it, it's encouraging in two ways; 1) I've got over the cold quickly, my immune system must be working OK (neutrophils are up to 3.0 as of last week!), and 2) whist the cough is quite strong, it's not caused any bone pain - a few months ago it would have been agony. We saw my GP yesterday, she doesn't think the cough is progressing to a chest infection, but I'll have to keep a close eye on it.

 

Milestones - and cake!

9^th January 2020 - 5 years ago

I've been feeling frustrated, and sad, to have not managed a few goals that I had planned, and thought were very achievable. One was for Cheryl & I to go down to Perranporth for a long weekend in November, but I'm still struggling to sleep in different beds, we've not been away at all since last February, other than two nights in Watford to go to the orthopaedic hospital, not exactly relaxing!

Another was to run the parkrun next week, a year after the last time I ran at Parke. However, I'm not able to run at present (maybe running will never be an option again), but we walked the route last week and invite you all to join me next week to celebrate my 45^th birthday.

I'm going to have a morning off wearing the brace so that I can enjoy walking around Parke, do come along if you can, it would be great to see you all there. I'll be providing coffee and cake, and will have a collection for Myeloma UK to support their work - check out the full event details!

I'd also expected to be out cycling in the beautiful Devon lanes during the autumn and early winter, but haven't progressed from the exercise bike in the garage.

Planning some new milestones for 2020 is on my mind, I'm really hoping that by March we can start to get back to some sort of normality again.

 

One step at a time

2^nd February 2020 - 5 years ago

Many thanks to those of you who were able to join me for the Parke parkrunwalk a couple of weekends ago. We enjoyed the beautiful, crisp and sunny start to the day. It was great to walk around the very muddy route and relax with a coffee and cake at the café afterwards. Most of us are named in the results! Thanks to your donations, and a cheque from my very generous Auntie Jan, we raised around £300 for Myeloma UK.

Embracing the brace

Close friends and family have discovered that I'm rather less huggable than usual due to my colourful exoskeleton which I'm trying to wear as often as possible during the day. I'm not wearing it while eating, but do wear it when I'm sitting at my desk (good practice for touch typing as I can't move my head to look down) and walking (we're avoiding rugged walks through the woods as I can't see exactly where my feet are going).

Has it made a difference? Well, the aim is to protect my vertebrae and sternum from further damage, rather than improve the existing damage. A secondary aim is to assist further healing of my vertebrae as the body (aided by the bisphosphonate treatment) adds density to my weakened bones. As I am also being less active, spending more time sitting and having a lie-down every day as a break from the brace as well as to rest my back, it may be that any change or improvement isn't directly attributable to the brace. One good improvement is that I am sleeping better, waking to turn over just 2 or 3 times a night, rather than the 7 or 8 times which has been normal for months now. I also have had very little lower back pain at night, and most mornings I don't wake with an aching upper back, which I was before. The pains in my upper back during the day, which often start in the early afternoon, and tingling in my legs and back seem unaffected.

The bisphosphonate saga

The doctor in London thought that there was clear evidence that the bone-strengthening treatment is helping my bones to regain density, so I am pleased to have the infusion each month. I was booked in on the 2^nd January, but this was cancelled as I had to have a small filling replaced at the dentist - there's a risk of developing a very painful condition, ONJ, which causes the jaw bone to be eaten away. It's thought to be an issue for people being treated with bisphosphonates who have trauma to the jaw, e.g. if a tooth is extracted. My dentist was very surprised that the treatment was cancelled after such a minor filling. Unfortunately, the replacement filling fell out and needed to be replaced again, meaning that another bisphosphonate treatment was postponed for a month, right when I want my bones to be strengthening whilst my brace is being worn. My consultant then brought the treatment forward by a couple of weeks, so in the end I was only a month behind schedule. This is just a demonstration of how a small incident can lead to a lot of complications!

My family and other animals

Cheryl was very brave a couple of weeks ago and, despite her claustrophobia, had a 40 minute MRI scan to see if a cause can be found for the numbness and tingling she has often had in her legs and feet over the last 6 months. We have an appointment with the doctor next week to discuss the results.
Cheryl's mum is starting to feel really fatigued as she's half-way through her course of chemotherapy, it's getting her down, so we're encouraging her to let it take its course, and rest as and when she needs to.
It's great being able to have our friend's girls after school 3 days a week with all the comings and goings to various activities, and to see our eldest niece every couple of weeks. I've got back into leading one of the children's groups at church some Sundays which is great as I've missed being able to help out. My sister and her family have been visiting us, from Poland, for the last week which has been great fun. I still get tired, but it's good to be able to enjoy time with family and friends.

Emotional rollercoaster

Each stage, from diagnosis, through the induction chemotherapy to the high dose treatment and stem cell transplant, then the initial recovery at home and now this brace-wearing phase, have brought their own physical and emotional challenges.
I was feeling so much more positive during December as I started to feel the old Rich coming back through, so it was a real blow to be going into another phase of treatment, albeit external rather than medical. I am spending a lot more time indoors, and doing less around the house, being limited in my movement.
Whilst I am starting to adjust to this period of 2 or 3 months, I've been feeling flat and sometimes rather low. It's wearing when so many of my thoughts throughout the day, and night, are about the cancer and its effect on my body, my life.
Working is a good way of taking my mind off of my current situation, so I've been keeping busy that way. I'm also able to use the exercise bike whilst wearing the brace, so I'm getting some miles in, even if they are stationary!
The support of friends has been a real encouragement to us both, I find that I am lifted by times spent enjoying the company of caring, interesting, insightful friends - all of whom have their own challenges in life. It reminds me to look beyond my immediate circumstances and to see myself as part of the great tapestry of life. It's also good fun! So a big thank you to you all, and do please keep visiting and getting in touch!

 

Hair do!

7^th March 2020 - 5 years ago

Wow - what's happened to my short, straight hair?!

This very weekend last year was when I was phoned with the initial blood test results which led to the diagnosis of myeloma. As the opening words of 'Fugitive Pieces' say, 'Time is a blind guide.'

There are several reasons why I've not updated my blog for a month -

• I've been feeling rather low, with the restriction of wearing the brace and the continued focus on the effects of having cancer, treatment and bone damage
• There's not been much medical change to tell you about
• A couple of work projects have been keeping me occupied

Cheryl & I have found the last couple of months very difficult emotionally as I've been restricted in my activities by the brace, my pain levels didn't seem to improve and Cheryl's Mum has been very weakened by the chemotherapy.

We're doing better now as Cheryl's Mum is getting stronger again, they've stopped her treatment early as she is in complete remission from the lymphoma, good news! My back pains have improved a little, I'm sleeping better - this last week I've been able to carefully turn over in bed without any pain for the first time in many months.

My upper back is still achey most afternoons / evenings, some days it's fine, others it can be quite painful for a couple of hours. In October I couldn't take a deep breath without the pains spreading round from my spine to the front of my ribcage, and for a couple of months after that it was still painful in my back to take a deep breath. Breathing currently causes me no pain, which is brilliant. I'm still on the slow-release morphine patch and 6 paracetamol per day. I hate taking any medication, so hope to be able to reduce this in time. Whilst I still think consciously about most movements, sitting down, filling the kettle, opening the garage door, carrying a bag of shopping, lifting a plate from the far side of the table, I do find that I am moving much more freely and able to do more things without extra thought or concern.

A friend told me that I need to find better words than, 'cope' and 'manage'. I'm aiming for, 'enjoy' and 'relax', then 'explore' and 'adventure'.

Both Cheryl & I have been getting back to a more regular work schedule, as well as looking after Esther & Heidi after school 3 days a week, along with Cheryl helping her Dad with visits to the doctor and the shops, so some normality reigns.

During half term a couple of weeks ago, I 'cycled' 45 kilometres over 4 days - on the exercise bike in the garage, wearing the brace - I get a few funny looks from neighbours as they walk past. In fact, walking through town I've got used to turning plenty of heads as they respond to my strange exoskeleton.

Tomorrow, Cheryl will drive us up to Watford to return to the Royal National Orthopaedic Hospital for an MRI scan and consultation around midday on Monday. I expect the scan to show no particular change since December, but hopefully some of the remaining lytic damage (holes in my bones) will have further reduced due to the body's amazing healing potential and the assistance of the monthly bisphosphonate treatment.

I also hope that they'll say there's no need to wear the brace any longer - but I'm getting used to things not being as I expect! It would be good to get back to driving having not done so since March last year.

We'll update you once we've seen the team at the RNOH.

As always, thanks for the love, visits, cakes, laughs, emails, soups, phone calls and friendship which help us along the way.

 

The first day of the rest of my life

11^th March 2020 - 5 years ago

We had a good trip up to Watford to see the consultant at the RNOH. The short version of the story is that I no longer need to wear the supportive brace and that the doctor is happy for me to return to 'normal activities'.

I was a little anxious about having the MRI scan, I knew it would be OK, but it does seem a small tube to be slid into for half an hour! They let me choose some music to listen to, so The Magic Numbers kept me company, mixed as they were with the rhythmic pulsing of the magnetic field generator.

The consultant welcomed me with the words, "I've failed you, I've failed you as a human being." Fortunately he wasn't speaking about his medical advice, but that he'd not replied to my emails of the previous 2 weeks asking a couple of questions about what he could see on the PET scan I'd had last March and recently sent to him, and asking if I could see their team's specialist physiotherapist whilst we were up at the RNOH this Monday. I'd also phoned the week before so already knew that the physio was off this week, frustrating as they've told me to only see their physio but have not enabled this to happen.

Anyway, the doctor then looked at my fresh MRI scan and was happy that there were no new fractures and declared that wearing the brace had been successful. He was able to show me the state of my spine from the PET scan which was used as a diagnostic tool a year ago, it looked fine with no sign of the fractures which must have happened in the following weeks when I experienced the strong back pain. I expressed my frustration that I hadn't been given suitable advice about avoiding fractures in my back at the time. To my surprise, the doctor responded by asking if I was planning to make a legal claim against the NHS. Of course that wasn't what was on my mind, I just feel that if I'd have been advised to avoid as much movement as possible I may have prevented fracturing four of my vertebrae, meaning that I could be pain free now with no real concerns about my back. The consultant explained that they consider fitting braces to patients when they are diagnosed with myeloma, or even injecting bone cement into each vertebrae to prevent fractures. Clearly neither of these options was made available to me, nor was it clear that the RNOH team would recommend it. It's also worth remembering how much I had to deal with when first diagnosed as the treatment started immediately and I was in a lot of pain and in shock about having cancer.

Rather than getting bogged down in what-ifs, I must remember that the most painful activity for me was usually trying to sit up to get out of bed, and that the strong pains I had in my back, which presumably were at the point of the fractures occurring, were when I was walking around the room, not when I was doing anything more energetic.

Having driven up to London and stayed overnight, and despite the doctor running late due to double-booking, I made the most of our opportunity to speak with a specialist and asked lots of questions about my spine, the scans, my pain and suitable activity going forward. It's very useful seeing the scans on the screen as there's so much detail, you can scroll through each 'slice' of the spine to see the holes caused by the myeloma, but also how these have healed and that there's no constriction of any of the nerves in my spine. It's not too clear why I have lower back pain, although the thin struts - known as 'spinous processes' - which lead out from the main bone of the vertebrae towards the skin of my back were clearly strongly affected by the myeloma when it was active, so these could be tender due to their damage. Also, the consultant could see no reason why I get hot and cold shooting 'pains' (not really painful, more like strong pins and needles) in my upper back from time to time.

Since my bones have now strengthened, the main question which I don't seem to be able to get an answer for is, "If I do something unwise, such as take up weightlifting or bungee jumping, what is the specific damage that I could do?" The doctor just gives me the, "Why would you do something so foolish?" face. I really want to know if it's more likely that I could break or fracture a bone (I'm being told that my bones are able to be as strong as anyone else's), or if there's some other sort of damage which is likely. Don't worry though, I'm not planning on taking up any extreme sports and am certainly going to take everything very gradually.

The doctor explained that since my back has changed shape and lost some height due to the vertebral fractures, the muscles will be working harder to perform the normal function of my back. This can lead to aching, and will hopefully improve with exercise and time.

In the letter detailing Monday's appointment, the RNOH doctor releases me to the care of the local haematology team, with 'no significant pain'. A slightly rosy view since I'd explained to him that I have to lie down for an hour most afternoons to ease my back pain, and I generally have pain in my upper back when doing anything like cooking, and often when I'm sitting or standing, and sometimes the pain in my lower back prevents me from sleeping. Also, however, a reminder that the pains could be much worse, and that my situation has improved a lot compared to last spring and summer when the fractures were fresh and my bones still weakened.

I've got some simple stretches and exercises to do each day to try and improve the condition of my back. It's also great to be able to go out walking without wearing my brace, I can actually see where I'm putting my feet and look around at the beautiful Devon countryside.

Having not quite had enough of hospitals this week, I'm having a blood test tomorrow which will give my consultant the protein levels ready for next week's consultation (if it goes ahead, Cheryl's Mum's clinic appointment has been cancelled due to the coronavirus).

This has been a long update, but I wanted to explain the full picture. It feels frustrating to have this ongoing pain, but I do feel a new opportunity to now get on with my life with freedom from any medical treatment or device, sort of a new beginning!

 

All dressed up with nowhere to go

28^th March 2020 - 5 years ago

With the recent measures introduced in the UK, and around the world, to help mitigate the effects of the coronavirus pandemic, everyone is focused on the repercussions of being under medical lockdown. Two weeks ago I said that I can now get out there and experience life again after struggling with treatment, bone pain, having to be careful about infections and wearing the back brace for 2 months - but then I found that, along with millions of others around the world, Cheryl & I are in self-isolation.

My immune system has certainly strengthened, and I'd hopefully be OK (i.e. not die!) if I did catch the coronavirus, but I am probably weakened in that regard and don't really want to test it out. According to Boris, and my haematology consultant, I am in the high risk group. I calculate from statistics online that, if I were to catch it, I'd be around 5 times more likely to die from COVID-19 than someone else of my age. We have, therefore, gone into isolation at home. We will be going out for walks, and - as you can see - I have bought a new bike (my lovely Rock Hopper was stolen last March) and have been for a couple of short rides. My back was fine whilst riding, it was wonderful to be out there again, watching the road fly by, listening to the birds singing, feeling the wind blowing in my hair (that's actually a new experience for me!) I'd forgotten about cold toes, the steepness of Devon hills and the fact that a year 'off' has left me far below peak fitness, but I'm really enjoying riding again. My back was a bit sore for a couple of days afterwards, taking a deep breath was painful again which it hasn't been for a couple of months, so I'll need to be careful to ease in to new activities.

I wrote most of this post 10 days ago, since then our isolation has become much stricter, no bike rides for the time being and only a very safe walk round a quiet part of the local block when there's no-one around.

During these strange times, and with so much fear and uncertainty about the coronavirus pandemic, I wish you all health and peace. Humanity has stood up together in love and support. When we individually feel low, at risk or defeated, remember that we're in this together. There's much pain and suffering, but the sun rises in the morning and there's a choice to turn to love, to choose to trust and value each other, to work for solutions to help ourselves and others, and to share fully in this wonderful mystery of life.

 

Taking the strain

9^th April 2020 - 5 years ago

In this time of COVID-19 induced lockdown, many people are saying things such as, "This time last year I was on holiday", or "This time last year I was running the London Marathon".

This time last year, to the day, I was starting 5 months of chemotherapy. I was in a bad way with lots of rib pain and, for a few weeks, was walking very gingerly due to strong spasms of pain in my back. There was also, I readily confess, much fear and trepidation about the side effects and efficacy of the treatment.

So, a year on and 6 months clear of the treatment, I am much stronger and more able. The Stem Cell Transplant was a tremendous success! I am very grateful to have been provided with this life-saving treatment.

I still struggle with pain in my lower back and also in my upper back where 4 of the vertebrae were fractured. It's frustrating to be unable to fully engage with what's going on around me at times as all my brain is telling me is, "you're in pain, you're in pain, you're in pain". The pains aren't that strong, but the long-term effect of them is tiresome. I keep a diary of my symptoms and feelings, and can use this to look back to see that things are, very gradually, improving. I'm finding some of the stretches from the physio useful for easing my lower back, and my upper back pain is eased by lying down for 20 minutes - always good to have an excuse for an afternoon nap!

I rejoice in low-pain days, and am much more relaxed with normal movements now. I'm spending a few minutes most days juggling in the garden, the need to move quickly is good for restoring confidence.

Having been told that myeloma cannot be cured, but will come back (in an average of 3 years) and that I'll need further treatment, I understand that my future holds some difficulties, to say the least. I had thought that I'd be able to put these concerns largely out of mind for a few months or years, but with the constant reminders triggering in my body each day, it's weighing on me more than I had expected.

That said, I am an optimist and am generally in good health. I hope to have 5, 10 or even 20 years before the myeloma returns. I aim to live a worthwhile, connected, enjoyable, generous, purposeful life. I realise that my pains, and the limitation they put on my activity, are mild compared to what many people suffer with. Once more, I am so grateful to be living in beautiful Devon, with the birds singing and the sun shining on the trees gently swaying in the breeze. I quite enjoyed the months of being lashed by storms, before the change to more clement conditions!

Friends have been asking me if I'm still having any treatment or hospital appointments. The clinic meeting with my haematology consultant 3 weeks ago was converted to a phone call, she told me that my blood results are all good, and there's still no sign of any paraprotein. The monthly bisphosphonate bone strengthener infusion has been changed to a daily course of tablets so that I don't need to attend the hospital for the foreseeable future. I am grateful that such alternatives are available. My consultant doesn't want to do another blood test, or see me, for 4 months. This seems like a long period, but with the current pandemic situation and my blood results being so good, I am happy to wait.

Life in lockdown is mostly OK for me. The coronavirus would potentially be fatal to me, as it would to all of us, with varying likelihood, so I am happy to self-isolate. Cheryl is isolating with me and is keeping us well stocked with supplies via deliveries, and friends have offered to drop off anything we need. I'm used to working from home and have plenty of useful things to do. Of course, like all but the most introverted of us, not seeing friends and family is very difficult. I am grateful for the ubiquitous video conferencing technology available, and to our good friends who are always at the end of a phone.

 

Climb every mountain

5^th May 2020 - 4 years ago

Don't worry, despite the twee title and the photo of a mad lady who thinks she's a deca-kilo-pede, you are in the right place - this is the Rich Life Blog.

I should explain the blog name. In my darkest hour, I didn't want to focus on 'my illness', but on striving to live a 'rich life', full of love, adventure, and experience. Some days, when pain and fears compete for attention in my mind, it's difficult to think of my current circumstances as a rich life. I try to step back, to see beyond, to hope for the future and to enjoy the moment. Life is such an amazing opportunity - knowing our place in the universe, testing the limits of existence, balancing selfish survival with compassionate resilience.

Last March, unaware of each other's situation, my good friend from University, Rosy, who lives in Liverpool, was diagnosed with smouldering myeloma following a blood test. Rosy's paraprotein levels in her blood are just below the 30g/l threshold which indicates active myeloma (my level was 39g/l at diagnosis), and her plasma levels from a bone marrow biopsy were not much above normal.

I didn't know anything about smouldering, or asymptomatic, myeloma, but have since learnt that it almost always progresses to active myeloma and would only be treated once active. The good news for Rosy is that she is being closely monitored, and treatment would be available immediately that the disease becomes active, which crucially would be before any significant bone pain or damage.

Rosy is very brave and is living life to the full, but knows that there's a ticking time bomb inside her.

Currently, Rosy is climbing Everest... ...at home! Also being in the shielding group, she is based at home for at least 12 weeks, during this time Rosy is climbing 2,903 flights of stairs, equivalent to the height above sea level of the Earth's tallest peak, 29,030 feet, all to raise funds for Myeloma UK who are expecting to miss out on £500,000 of funds from events which are now cancelled.

A quick update on me!

• My lower back has been much less painful for the last 10 days, a real relief - I hope it continues in this way.
• My upper back is sometimes quite uncomfortable and painful, I still have a lie down to ease it most afternoons.
• I've had a few spots of pain in my ribs the last 2-3 weeks which is concerning as I've not had any rib pain for around 6 months. I've spoken to my haematology team as a blood test would show if the myeloma has come back. Clearly it would be a huge shock and disappointment if that were to happen so soon after the treatment, so hopefully it's just some pains from the existing bone damage.
• Cheryl's struggling with not being able to visit her Mum who is still very frail, whilst we're in lockdown.
• Mostly I'm feeling useful, peaceful and meaningful, but sometimes a little despair creeps in.

 

All clear

16^th May 2020 - 4 years ago

Late yesterday afternoon I heard from the haematology nurse that my bloods are all fine, there's no detectable paraprotein! I'd been quite worried after having some new rib pains over the last few weeks, so it's great to be given the 'all clear'.

I had the blood test in Newton Abbot Hospital on Wednesday - our first outing to a public place since the Covid-19 lockdown started 2 months ago. It was strange being close to the staff at the hospital, but I was in and out in a matter of minutes. I took the opportunity to drive to the hospital - my first time behind the wheel in over a year! It felt very normal and natural to me, but Cheryl was looking rather stressed!

My ribs, and sternum, have largely been OK, sometimes I get some pains in various places, hard to tell if it's boney or muscular pain.

I'd been feeling a bit down about exercising as it seemed that gentle activities were causing me more back pain, but I decided it would be good to try out the exercise bike again. We moved it from the garage to the garden on Monday, and each day this week I've 'cycled' for about 40 minutes, visualising some local rides and enjoying the sunshine, birds singing and bees buzzing busily around in the garden. I've felt really good, it's been too long since I was able to actively push my body. My back has felt stronger for it. I'll rest over the weekend and then get back in the saddle on Monday. When I'm able to stray beyond the garden in a few weeks time, hopefully my legs will be ready for the Devon hills.

Whilst the lockdown doesn't affect me too badly as I have plenty to do, I am really missing seeing people, and starting to miss seeing the sea and walking along beautiful Devon rivers.

In other news

• Rosy has finished her stay-at-home ascent of Mount Everest! I think she's planning on taking over the daily PE lesson from Joe Wicks now that her legs are stronger than his!
• Cheryl's Mum is in a bad way, she's been in hospital for a few days with an infection in her legs, she's completely bed-bound which is very unpleasant and stressful.

 

Cheryl's Mum

7^th July 2020 - 4 years ago

Sadly, Cheryl's Mum, Brenda, passed away a month ago on 8^th June. Following a successful course of chemotherapy at the end of 2019, she didn't recover her strength and was admitted to hospital with an infection in her legs in mid-April. Despite the efforts of medical staff, Brenda continued to deteriorate.

Due to the COVID-19 lockdown, no hospital visits were allowed. Cheryl phoned the hospital every day and was usually able to speak to her Mum as well, although often she was too tired or confused to hold a conversation for more than a few minutes. Brenda was in Brixham hospital for her 80^th birthday, the staff baked her a cake and sang, "Happy Birthday", to her, but it's not quite the celebration that she was hoping for.

We were able to hold a simple funeral service for family and close friends, it was good to be able to say, "Goodbye", together.

It was so difficult not to be able to visit Brenda when she was unwell, and Cheryl often felt that she was getting very little information from the staff at the hospital who were caring for her Mum.

We are glad that Brenda had enjoyed these last few years of her life so much, even with her health struggles, and that she was so determined and full of perseverance.

The last few weeks have been sad, and stressful, with the loss and all the arrangements. Everything is so much harder with the lockdown restrictions, and we are very upset about not having been able to visit Cheryl's Mum since March.

 

Fighting for Life - Part 1

4^th October 2020 - 4 years ago

The subject may sound a little dramatic, let me assure you that medically I'm fine. Having been through the bone damage, cancer treatment and recovery last year, then wearing the back brace for January and February this year, I am now in a prolonged period of testing myself out, seeing what I can and cannot do. I'm fighting for a full, worthwhile, purposeful life where I'm physically active, emotionally aware and being a useful member of society. Well, it's good to have aims!

Physically Active

I've always been a very active person, unable to sit still, longing for the outdoors, adventure calling to me around every corner. It's not an add-on, an optional extra, it's intrinsic, essential, fundamental.

We've kept walking through my recovery (and the C19 lockdown), and as my strength and energy returned I 'cycled' every week day in May on an exercise bike in the garden. I've no idea how I'd have coped with myeloma and the damage to my back without my fitness and the strength in my legs. Part of my drive to stay fit now is to give me that confidence going forward if, and when, the myeloma returns.

As lockdown began to ease, I went out for a few wonderful bike rides in the beautiful (i.e. "hilly") Devon lanes, managing a ride to Hollicombe for a swim and all the way to Moretonhampstead and back, making use of the new Wray Valley Trail. It felt amazing to be out on my bike, easing through the Devon countryside, my back was OK and I felt alive. Unfortunately, after these rides I started to get a restless, tingly sensation in my shoulders and arms, like a strong pins-and-needles, which got worse each time until I couldn't sleep at night.

Reluctantly, after a month back in the saddle, I stopped cycling.

Riding my bike has always been my freedom, my joy, my living. Transporting me to countless adventures, connecting me to the world around me, using and giving energy with every rotation. Speeding me up to embrace the sea, to quench my thirst for the river, to deliver me home. Slowing me down to hear the birdsong, to feel the wind, to stretch my eyes.

Not riding, not living, not hoping.

Flat.



Inside, there's a spark, a fire, an unrelenting call to live, to engage, to win, to encounter, to overcome. Inside, I found me. Still there, still hoping, still living.

Cheryl returned to work as I left the protection of 'shielding' from Covid-19. I took the opportunity to travel to Paignton with her and embark on all sorts of walks around the glorious coast of Torbay. On a blisteringly hot day I walked 10 miles of gruelling coast path from Hope's Nose in Torquay to Shaldon, enjoying 2 refreshing swims along the way. A wet-and-windy day found me walking 12 miles from Berry Head in Brixham to Kingswear, via the Daymark. My most exciting day of the last 18 months was when I walked Torbay from end-to-end (Hope's Nose to Berry Head), 15 miles of unexpectedly beautiful coast path, waves pounding in all day after a storm. Sun, sea and adventure combining in each joyous step.

I keep reminding myself that for months last year I was afraid to walk down the road, that the slightest jolt caused back pain and the fear of fracturing vertebrae, and yet here I am striding out in the rugged splendour of South Devon, fully alive.

I will try cycling again, perhaps on a mountain bike with suspension rather than my road bike where you feel all the bumps and jolts, but for now I'm happy and content in walking.

Life calls us to explore, to stretch ourselves, to engage. To answer that call, in our relationships, our beliefs, our endeavours, is to live. And I, for one, intend to live.

 

Fighting for Life - Part 2

10^th October 2020 - 4 years ago

After a long break from my blog, I now find myself full of words, so I'm splitting this update into 3 parts. Do let me know if you're bored of my ramblings!

Emotionally Aware

Reading back through my blog entries, or seeing photos from the last 18 months, I feel like it's someone else's life that I'm seeing. Surely I can't have been struggling so much with bone damage that I was afraid to walk across the room, I can't have spent months fuzzy-headed on chemotherapy or languished in a sealed hospital room for 3 weeks.

I think it's good that I feel so removed from that experience, and yet it's always at the edge of my thinking, every time I have a twinge or ache in my back, when I get occasional pains in my ribs, when I have an appointment at the hospital.

People always seem to talk about cancer with a capital C in a way that you don't expect with heart disease, stroke, pneumonia or other conditions. With a growing proportion of people affected by cancer in our modern world, I think we need to take the stigma and taboo away from it. Talking about death can be healthy, hiding its inevitability seems futile. In the same way, we could benefit from having more awareness and openness about cancer. I remember sitting in hospital waiting rooms last year, seeing racks of Macmillan leaflets about all aspects of coping with cancer, each one felt like a slap in my face - how could I, in the prime of my life, be knocked down in this way? Even with having sat in the same surroundings with Cheryl's Mum, I was completely unprepared to find myself diagnosed with cancer.

The medical staff are very good at talking in a helpful way about my situation, but sometimes I get stuck on what's not being said, e.g., "What's your primary cancer?", clearly they're used to people having multiple cancers (around 5% of patients having the stem cell transplant develop other blood cancers or skin cancer within 3 years). A specialist nurse in Plymouth encouraged me with the words, "You might defy the odds and live for 10 or 20 years", I take her meaning and am grateful for the sentiment, but I found the phrase stuck in my mind for a couple of months, reminding me that I probably only have a few years ahead.

My gratitude is boundless to all the doctors and scientists who research treatments and cures for cancer, and to the doctors and nurses in the NHS who administer treatment. My bones were literally crumbling away, but the treatment to strengthen them and ward off the cancer that was attacking me, whilst being almost as scary as the disease itself, was effective. Recently I was talking to a neighbour about my ongoing back pain, he said, "It's better than being dead." Too true!

Almost everyone has been affected over recent months by changes to work, school, socialising and the routine of our lives. Losing Cheryl's Mum in the middle of lockdown, after not being able to visit her in hospital, was very upsetting. Several people have said to me, "It's good that you weren't ill this year." It doesn't bear thinking about what state my bones would have been in if my treatment had been delayed even by a couple of months.

I've found parts of this strange period in 2020 quite calming, we've had so much more time, and I've been able to focus on recovering my energy levels and fitness. Other parts of the last few months have been difficult, with less interaction and commitment each week, the danger is to become very inward looking. I was very low after finding the freedom of cycling again after 18 months, then having to stop. It's been harder to meet up with friends, and I think everyone has Zoom-fatigue.

When the local hospitals weren't providing any routine treatment, I was fortunate to be able to take a tablet form of the bone-strengthening bisphosphonate medicine. This meant a break from any hospital visits, which was very freeing. Even after taking around 1,000 tablets of various sorts during treatment last summer, and over 1,400 paracetamol (around 4 a day for a year), I still cannot swallow tablets, so crush or dissolve most of them, which is time consuming and foul tasting. I was, therefore, really pleased to go back on the monthly bisphosphonate infusion, and to be able to reduce my paracetamol intake to zero about 2 months ago. I stopped using the slow-release morphine patches about 3 months ago, so am now not taking any pain killers - wahoo!

I'm very grateful to have been working on the Family Video Game Database with my good friend Andy, it's a worthwhile, engaging project that has kept me occupied with work and given us both a good focus in unsettling times.

Speaking candidly, the weight of living with cancer - even in remission - is ever present. Whilst most of the time it's under the surface, and I'm floating on top, sometimes I feel the dark tug of despair from the depths. I have been thinking more philosophically, and am much more afraid of painful times ahead than of no longer being here. Whilst I'm fit and able, I'm striving to engage fully in life. I certainly don't take good health for granted, and am thrilled to be able to be so active again (around the house / garden / garage as well as out adventuring). I am very aware that so many people have such daily struggles with pain, loss of mobility and the stress and fatigue of chronic conditions, my heart reaches out to them.

Modern life is so hectic, commercial and self-focused. Really connecting with ourselves, each other and the natural world may seem like luxuries that we can't afford, but they're essential in order to live a rich life.

 

An interruption to planned service

16^th January 2021 - 4 years ago

The astute among you may have realised that my 3-part "Fighting for life" update stopped short last October after only 2 parts. The reason was that in the middle of October 2020 I had a result from a regular blood test that I hadn't been expecting - my paraprotein level had risen from 'undetectable' to a low, but detectable, 1.4g/l.

This really knocked me, I had just started to relax and feel that perhaps I'd be OK for 4 or 5 years and could really make the most of life, be involved in the lives of our friends and family, and not need to think about bone pain or cancer treatment. I was quite shocked at how hard this result hit me, it felt just like the original diagnosis again. I decided not to write about it in my blog but to wait a month for the next blood test in case this was just a blip. I felt tired of the medical system so didn't chase for the result but waited from mid-November to mid-December when I had a phone appointment with my haematology consultant. She confirmed that the paraprotein level had risen further to 2.7g/l. A 'normal' person has no paraprotein, and 30g/l leads to a diagnosis of active myeloma. I didn't feel like worrying you all just before Christmas, especially with all the COVID-19 difficulties faced around the world, and, as an optimist, still wanted to see if the next blood test would show a different story.

This week I had another blood test and the paraprotein has risen again to 5g/l. So, the level is still very low, but it seems clear that it is on an upward trend. There are no plans for any treatment at this stage, but I expect to have a blood test every month and would be keen to start treatment before my bones are badly affected. All other aspects of the blood test are fine (Calcium, kidney function, liver function and white cell count). Mostly my bone pain has gradually improved month-by-month, but I have had some unexpected rib pain over the last week and have been very tired since Christmas and often have a lie down in the afternoon both to rest and to ease my back.

As usual, Myeloma UK have a very informative pack about relapsing and refectory myeloma.

I've really enjoyed walking in the beautiful Devon countryside over the last 6 months, in fact I probably go on about it as much as I used to talk about running and my 5km times or park run finish positions! The picture above is at Hope's Nose on a blustery day. I'm grateful to be able to walk on rugged terrain for hours at a time, with a day pack on my back - things I wasn't sure I'd be able to do again. I cannot bear to think about losing mobility again so am keen to determine what treatment will be needed, and when, to protect my bones.

This update comes with a heavy heart. Cheryl and I are understandably distressed by what could be a relatively short period of remission (3 years is average after the Stem Cell Transplant), but also with hope that the disease won't progress too quickly or can be kept under control with further treatment.

I know that we each have difficulties to contend with, especially during this second peak of Covid-19, my love goes out to you all, I remain focused on, and enthused by, the experience of life.

 

Happy Birthday to Me

19^th January 2021 - 4 years ago

Just in case you haven’t received this invitation another way, please join me in celebrating my birthday - details on the link below!

flipside.co.uk/rich46

 

Fighting for Life - Part 3

21^st March 2021 - 4 years ago

Following the interruption to my planned state of enjoyment of a few years of good health, and coming to terms with the cancer growing again inside my bones, it is high time that I finished my thought from last October where I contested that, "I'm fighting for a full, worthwhile, purposeful life where I'm physically active, emotionally aware and being a useful member of society."

Being a Useful Member of Society

After much head-scratching as to how to define this aspect of life, I've concluded that giving and receiving love, encouragement, friendship and joy in all their many forms is the only 'useful' way to live. I'm just going to get on with doing that rather than waffling about it here!

I've read of people who, having recovered from treatment for cancer, have lived life with a new vigour, making the most of each day. My Rich Life philosophy has always enabled me to say, 'Yes', to every opportunity, to see each day as a gift of life, love and adventure and to make the most of each situation, so I don't feel this 'rebirth', but am I grateful to have enjoyed each stage of my life.

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Planning Ahead

I spoke to my consultant a few days ago, she informed me that the paraprotein level has risen again, from 5.7 to 6.7g/l over the last month. So it seems a very steady rate of increase at around 1g/l per month. This, at least, is reassuring as each blood test shows an expected rise rather than having to deal with the shock of an unexpected result. We had hoped that the paraprotein, which is an indicator of the activity of the myeloma in my bone marrow, would stay at constant level or even reduce, but it is on a clear upward trajectory.

My consultant was unusually informative and was even drawn on the approximate level at which further treatment would be considered, around 15g/l. So, at the current rate of increase, that would be towards the end of 2021. Actually having this figure and date in mind is helpful as it brings a level of clarity - whilst also looming uncomfortably close just a few months hence. My consultant has also changed my monthly bisphosphonate treatment to quarterly as that's a strong dose in itself.

When I last added some graphs to my blog it was to show how the treatment was effectively decreasing the paraprotein level, which felt very positive. So, it's with a heavy heart that I begin to chart the rise of the paraprotein in the graph below.



I won't write about treatment options now as that lays some months ahead, but it will likely be similar to last time, i.e. a novel chemotherapy, either for a few months followed by another high dose treatment and stem cell transplant, or as a 'maintenance' treatment that I'd be on for as long as it's effective, maybe 2 years. Assuming that this treatment prevents further damage to my bones, my main concern is that it will leave me fatigued and fuzzy-headed for the rest of my life, I fear not being able to concentrate or fully express myself.

It is, however, wonderful that treatments exist and indeed new treatments are being developed and approved at a good rate. I hope that with a range of treatments as they are appropriate, the myeloma can be kept at bay for a few more years.

My bone pain continues to improve gradually (I would say by about 2% each month) and I am enjoying being fairly active. Some highlights:

• After 18 months of sleeping on the hospital bed in the spare room with Cheryl on the spare bed, we are now reunited in our bedroom and sleeping comfortably
• I've been cycling on my mountain bike, it's sluggish but the full-suspension protects my back and shoulders from the jolts so after riding 125 miles in the last 3 weeks I've not had any issues, it feels so amazing to be rolling along on the roads and cycle tracks, enjoying the views and exertion
• Most days I'm not in much pain when sitting at my desk or downstairs
• I've been enjoying gardening, walking, paddling in the icy sea, working, cooking, and have not needed to take any pain killers since last summer
• Generally, my energy levels are good and I'm enjoying the changing seasons in Devon

Do have a look at the creations that people sent me to join in celebrating my birthday a couple of months ago.

 

All the Time in the World

27^th July 2021 - 3 years ago

I've been struggling to write this update and have put it off for well over a month. I had a blood test back in May, however due to various issues over a month passed before I got the result. Sadly, the paraprotein had risen more than expected, from 6.7g/l in March to 10g/l in May. As you can see on the graph, it looks as though this rise will lead to treatment being considered sooner than previously thought, although not necessarily as soon as I hit 15g/l if other blood levels are OK and I don't have any new pain.



I have another blood test early in August (along with the now quarterly bisphosphonate infusion) and will speak to my consultant towards the end of August. I'll find out then what timescale she thinks is appropriate for treatment.

I've been finding this period really difficult, waiting to be ill enough to need treatment. It's hard to look forward to anything and I have a lot of fear for the future. I've never been an anxious person, but a twinge in my back can lead me to lose all confidence and walk around gingerly holding on to the furniture for a day or two.

Everybody's been saying how well I look and I've been increasingly active and energetic. It seems incongruous to think of the cancer taking hold within my bones.

I've bought a new mountain bike with good suspension and have ridden over 500 miles on it. I must confess that I love this new bike and the capacity it gives me to visit the sea (complete with many a cooling swim), to fly over the moor, to meet up with friends, to connect with the river, to be free. It's also quite handy for popping to Lidl for croissants on a Saturday morning!

When I was first diagnosed with myeloma, I mentioned to someone that I felt as if a large chunk of my life had been, "stolen". At times, I've estimated the percentage of my life that has been "taken", both in terms of time and of ability (mobility, energy and clarity of thought). Any such quantification seems rather pessimistic, and as a natural optimist I hope to fare better than any expectation.

More recently, I've been thinking about all of the opportunities that I'd like to take hold of, and realising that whilst we all have seemingly endless opportunity, over the course of our lives we will actually engage with a tiny fraction of the whole. We live each day as if we have "all the time in the world", when in fact our lives come and go in the blink of an eye. I've actually found this view helpful as I've been able to value each day, each interaction, each step, each breath, rather than focusing on the things that I will likely miss out on.

I mentioned to a good friend that I'd like to, "Meet everyone in the world and shake their hands", which might need some qualification (and lots of hand sanitiser!), but I believe that everyone is an individual with value, with needs, with a story.

I'd like to cross every river, feel the leaves of every tree, hear the morning song of every bird, I'd like to watch the sun set over every valley.

I'd like to stand on every continent, swim in every sea (some of them might be colder than the English Channel), understand every formula, help develop solutions to every problem, I'd like to turn every eye up to the infinite and out from our own 'ego' to see the lives of every one of our brothers and sisters.

I'd like to cut every flower in the world and tie them for my lovely Cheryl. I'd like to unleash the boundless love which we lock up in our cold, frightened hearts.

I'd like to walk every beautiful, rugged mile of the South West Coast Path, cycle around the whole of the UK, read about the experiences of everyone who pushes themselves to achieve something beyond their limits, I'd like to thank everyone who dreams, who perseveres, who forgives.

I'd like to live.

 

Still Alive

15^th November 2021 - 3 years ago

A few years ago, Elize and I made some fun videos up at Dartington Hall, we acted out a scene where we had a sword fight and she dispatched me, only for me to return a minute later with a cry of, "Still Alive!" It became a bit of a catchphrase for Elize, Cheryl, Cheryl's Mum and I.

So, I thought I'd better let you know that I'm still alive, and how things are progressing. Following my blog update at the end of July, I've largely enjoyed the gradual waning of summer, cycling to the beach for refreshing swims (I've just surpassed my target of riding 1,000 wonderful miles in 2021!), working with Andy, Jo & Oli on Taming Gaming, spending valuable time with good friends, and, along with Cheryl, buying a new house bungalow!



Mostly, I've been feeling more positive, aside from when new pains come along (I've been particularly worried about some pains and aches in my shins as damage to my leg bones could seriously affect my mobility). Occasionally my back pain is troubling enough for me to take some pain killers, but generally it is still manageable without, for which I am very grateful. Some days, however, I've felt quite low, I imagine the cancer slowly taking up residence in all my bones, I feel weak and defeated.

Monthly blood tests show the paraprotein rising by around 1.5g/l per month, it is now above 18g/l. My consultant is happy just to watch and wait as my other blood results are all OK. I was sent for a PET scan (see the update from 25^th March 2019 for details of the process) to see if there was a reason for the new bone pain. As often happens, I didn't hear anything and had to chase for an appointment a month later, but was glad that my consultant concluded that there was, "No active damage" to my bones.

Around the end of this year, or early in 2022, I expect to need to start a 6-month course of chemotherapy, culminating with another HDT and a SCT, a process which I feel a numb calmness about. The biggest challenge is knowing that this 'gold standard' treatment can only be given twice, so a year or two after the second SCT I may be needing treatment but have only lesser options available. I am also aware that after 2½ years I've forgotten some of the difficulties and side-effects of the treatment, and realise that I have a few unpleasant months ahead.

So, living in the moment continues to be the approach. I realise that I won't be alone in finding the extra restrictions due to the continuing Covid-19 pandemic very frustrating. After the relative freedom of the summer, and as I am neutropenic, we've avoided most social situations since the schools went back in September with the corresponding spike in Covid-19 infections. We are greatly missing seeing friends and family in person. I am concerned that being on treatment may be very different next year to 2019 if I'm unable to have visitors (at home, as well as in hospital), but am grateful for phone and video calls which, whilst lacking 'vital touch', do enable relationships to be maintained.

Over the last couple of weeks I've had a number of days when my lower back has felt very delicate, or been painful. When this happens I become very anxious about my vertebrae fracturing and find it daunting even to walk around. Generally, within a couple of days I get my confidence back and am more active again and have been on some good walks and short bike rides.

The photos are views from our bungalow, clearly the main attraction from my perspective! We hope to move in on 20^th November.

 

2022 A New Year

4^th February 2022 - 3 years ago

I hope that as you read this update you are well and enjoying 2022.

The end of 2021 was saddened by the loss of Cheryl's Dad, Terry. Cheryl has been increasingly involved in managing her Dad's care in recent years, he has been suffering with dementia and passed away peacefully in his sleep on 8^th December 2021.

Over the last year I've spent a lot of time with Terry, each Saturday we'd take him to Paignton seafront to enjoy watching the waves, sailing dinghies and people and dogs walking on the beach. I'd sit with him at home, talking about the good old days, our current lives and the view from his lounge window. He'd become a good friend of mine and I'll miss spending time with him and hearing his cheery voice.

Our Christmas was rather subdued, and in fact I've found things quite difficult as we slip from autumn into winter.

Some good news, as you can see from the graph below, the rate of increase of the paraprotein level in my blood (the main marker of myeloma) slowed in November and there was actually a fall in January - something that hasn't happened since the paraprotein showed its ugly head in October 2020. This means that my consultant is happy just to keep an eye on me and I won't be starting treatment early this year as previously expected - phew! I was starting to feel the dread of undertaking months of chemotherapy, so whilst it's still on the horizon I am very pleased that it's a bit further away.

There's no suggestion as to why the rate of increase has slowed and reversed, but I'm certainly hoping that it will continue in this new direction. I know that lots of my friends and family have been praying specifically for the paraprotein level to fall, thank you for doing so.

 

Getting to the point

13^th September 2022 - 2 years ago

How many years have I found myself letting the feelings of my heart express themselves through my fingers, picking out words late at night at my screen? How many words have flowed out of me? How many are yet to come?

All those questions have one answer, seeing as it's me, "Quite a lot!" I like rambling late at night, but I've found it difficult writing anything in my blog in recent months, partly because of all the turmoil in the world due to the Covid pandemic, Brexit (remember that?!), the disgraceful military attack of Ukraine by Russia, and the knowledge of so many difficulties in the lives of friends and family.

I've also been busy living, busy with friends, busy cycling, busy walking, busy in the garden, busy loving, busy working, busy cooking, busy swimming in the sea, busy being busy and busy putting off things that I don't like doing.

Since you're all busy living your lives, I'll get to the point, it's time for an update on my journey with myeloma. When I walked, slowly and gingerly, out of Torbay Hospital in September 2019 following the Stem Cell Transplant, I hoped that I'd enjoy 5 or even 10 years of remission. A year later, activity of myeloma was spotted in my bloods, and it has slowly but surely been taking hold again. Now is the time to fight back, and more chemotherapy is needed.

This Friday, 16^th September, I will start a course of treatment very similar to the one I started in April 2019. Rather than being followed by the High Dose Treatment and Stem Cell Transplant, this time it will be followed by a (hopefully long) period of maintenance treatment which involves an injection once a month of one of the chemotherapy drugs. In the future, I will most likely be able to have a second Stem Cell Transplant, so that 'Gold Standard' will still be available to me - it feels a little like a safety net.

Whilst I'm not looking forward to this return to the regime of pills, injections, blood tests, appointments, sleepless nights from the steroids, changes of taste, disruption to my ability to think, the frustration of fatigue and all the other effects of treatment, I am hopeful that it will be much, much easier to bear than it was in 2019. I won't have anything like the level of bone pain - my ribs continue to be fine, my back aches dully most of the time, and my sternum is mostly OK (it was new pain in my sternum (which fractured in 2019 (I think I've nested too many brackets! (I must think I'm at work))) which led to the decision to start treatment again) (sorry for all the brackets!) I also won't have just been hit with the terrifying reality of a cancer diagnosis, and I know a bit more about how my body has been effected by the bone damage, so don't over-react quite so much to twinges, aches and pains.

Cheryl & I are, understandably, worried about this new period of treatment, how I'll tolerate the drugs, how effective it will be and how long the maintenance period can be stretched out for.

Through my involvement with the Myeloma UK Discussion Forum (as a Peer Volunteer), I've learnt a lot about how people live with myeloma, and it's become clear that many people are beginning to see a time in the not-too-distant future when we hope to view myeloma as a chronic condition which can be controlled via treatment. Patients are often having more than 6 treatments over the course of many years. Myeloma is a very individual disease, some treatments work much better in some people than others, and, of course, there can be complications along the way.

This approach of seeing my future involving periods of treatment followed by periods of remission is very helpful in making me feel calmer about starting a course of treatment now.

We're going to be a bit more careful over the next few months about seeing people to try and limit the risk of infections, but, as ever, would love to see or hear from you, so do stay in touch.

 

In the Midst of Things

10^th November 2022 - 2 years ago

A vague title to this blog update to encapsulate the strange place I find myself, sad to be on treatment, glad that it's going well, is available, manageble and effective (none of which are to be taken for granted).

The treatment regime I'm on is DVd, that's Daratumumab, Velcade and Dexamethasone.

So, Daratumumab - Dara for short (and it does need to be shortenedededed!) is the reason that I opted for this treatment pathway rather than a similar one followed by a second Stem Cell Transplant. Dara has been approved by NICE for use by the NHS in recent years (and would now be routinely added to the VTD (when Dex got its own capital) that I has as a first line treatment) and has seen some good results. But it's only been approved as a second-line combination treatment, or a forth-line treatment by itself. From a paper on the matter, "18-month improvement in median progression-free survival was considered a ‘game-changing’ effect in the second-line treatment of multiple myeloma". Let's unpack that. Dara can lead to an additional 18-months in remission compared to just having Velcade and Dex(amethasoneoneone), which means that you'd expect get about 2½ years in remission rather than a rather paltry 9-12 months. This certainly seems good to me, although I'd hope for far longer in remission, especially with the Dara maintenance (monthly treatment) which will follow the 24 weeks of treatment that I'm now a third of the way through.

Whilst those timescales are easily measured in months rather than years, or decades, I'm just glad to have the hope of some more life. It's too soon to have any clinical data on overall survival as Dara has only been in widespread use for the last 2-3 years. It's also rather sobering to read from the same paper, "Overall-survival data from CASTOR were immature because more than half the patients in both arms were still alive at the interim analysis presented in the company’s original submission, after a median of 27 months follow-up". Hmmm, "over half were still alive", after ~2 years. Better than over half being dead, but it does indicate that Dara is no magic pill that gets rid of the fear or reality of myeloma's ability to progress and kill. In fact, I've heard recently from my friend David (who I met via the Myeloma UK forum, and is currently undergoing a Stem Cell Transplant as part of his first line treatment), that 2 friends of his who he's met this year as fellow myeloma patients, have sadly died - both were under 50 years-old, and both presumably had the same treatment options available to them.

So, you see the mixture of feelings that surround Cheryl & I at present. Being on treatment, with the daily tablets, side-effects, regular hospital trips, and tight focus on the fact that I am a myeloma patient, does rather dampen the mood. I'm glad that I've returned to life so much in the last 2 or 3 years, and look forward to doing so again in the years ahead.

I feel quite isolated in myself, more than a little sad about having this disease that effects my life so much, and am often tired due to not sleeping much on Dex Days. I've had some infrequent concerns with back pain, and am still on 'light duties' which is frustrating for someone who's always been so capable and active. A lot of our friends have challenging situations of their own at the moment, and our needs are much less pressing than they were back in 2019, but with distancing due to rising Covid numbers, and along with the general dismay at the state of the environmental and political world, I do feel rather alone.

However, I am faring much, much better than when I was first on treatment in 2019 when I was in so much pain, and shock, and fear. I've been walking pretty much every day, working most days (and a few nights each week when I can't sleep!), gardening, seeing friends, cooking, living. I've not suffered from 'chemo-brain', so am able to enjoy life a lot of the time. In fact, I've had quite a buzz from the rather high dose of steroids that I'm on so have been driving Cheryl mad dashing from one thing to the next, chopping down trees, heading off to swim in the sea (3 times in October, including the day from the photo at the top), cycling, cleaning windows, sweeping the drive, coding new software, trying not to succumb to some of the crazier ideas that come to me when my mind is so wired! Then, I'll dip for a couple of days and have no energy. I can certainly tell that the ongoing tiredness and cumulative effect of the drugs are starting to affect me more.

This update has been more technical and focused on the treatment than usual, but that's where you'll find me. The first 9 weeks are more intensive, after that the Dara drops from weekly to one-injection-per-3-week-cycle for the following 15 weeks (then monthly as maintenance). My consultant, when I asked her last week, wasn't sure if or when the Velcade dose might drop as well, but since I've only had very mild peripheral neuropathy from it so far, I'm happy to stay at the full dose to get the best response.

As ever, do keep in touch, we're always grateful for your love and support. I'll send another update with some test results etc. in the next week or so.

 

22 going on 23

18^th December 2022 - 2 years ago

The treatment continues to go well, I'm now just starting week 14 of 24 weeks, so just over halfway - it's beginning to feel like a bit of a slog.

The graph shows that the combination of drugs are very effectively lowering the paraprotein level (which is zero in 'normal' people), and by the end of the treatment this should be very low indeed, and can hopefully be held there by the monthly maintenance treatment.

I'm really feeling the build-up of the effects of the drugs, the steroids which initially were giving me lots of energy, seem slow to kick-in and don't give me a buzz or much of a lift anymore, so I'm tired and a little flat on good days, and really fatigued for several hours on bad days. I'm sleeping better, but when lying awake am less settled and my back is more achey. I've had some strange tightness and pains in my lower back, but they seem to have improved, I wonder if it's a nerve issue caused by the Velcade. The 'week off' in cycle 4 was physically good, I felt more normal and level, but I was rather low in my mood as the mental clouds of 'chemo-brain' which are noticeably building through the cycles, cleared a little but not enough for me to feel like myself.

So, as you'd expect, it's a bit of a mixed bag, as things are in other areas of life for Cheryl & I, and indeed for many of you! I mostly stay positive, and certainly stay as active and engaged in life as my health allows.

Best wishes to you all for a Happy Christmas

 

Walking the Path

7^th September 2023 - 19 months ago

It's hard to believe that it's 9 months since I updated my blog about living with myeloma. Back in 2019 I wasn't sure that I'd see the year out, and certainly didn't expect to see many more years, and now it seems as if the months are rolling on by at an alarming rate.

Several people have said to me in recent weeks that they've enjoyed reading my blog updates, and some have asked why I've not written anything for a while. As usual, this is because there's fortunately not much change going on with my disease and treatment, and because there's a lot happening in the rest of life for Cheryl & I, and our friends and families, and of course so much difficulty in the world right now.

A brief update on my health

I finished 6 months of DVd chemotherapy at the end of February 2023, I'd found the last 2 or 3 months pretty tiring, my mind was foggy and my body fatigued. Having said that, I was much, much better than when I was on treatment back in 2019 when I also had the pain of fractured vertebrae, sternum and ribs to deal with.

In March I was started on a maintenance treatment which is a monthly injection of Daratumumab (the 'D' in DVd). There's some pre-meds, mostly my good friend Dexamethasone (the 'd' in DVd) which gives me a buzz but also stops me from sleeping. On the DVd treatment, I was having 20mg of dex 4 times a week (2 weeks out of 3), whereas on maintenance I have 20mg once a month, so about a tenth of the dose. The Dara itself doesn't seem to give me any side effects or issues. So, on the whole the maintenance treatment is very easy to tolerate, I'm just lacking in energy for a couple of days following the injection. I've got used to the rhythm of this and limit my plans on those days.

Living with myeloma

I'm thrilled to be living a basically 'normal' life, I'm generally pretty active, cycling and walking a lot, swimming in the sea when I can, working most days, involved in church life again and socialising. These things all seemed out of reach a few years ago.

However, I am finding that I dwell on my illness more than I'd like to, mostly because the dull ache that is always moving around in my back, and often in my ribs or sternum, along with pains in my shins, remind me that my bones have been damaged by the myeloma. I've spent more time this year trying to alleviate these pains through stretches and exercises, and 'hanging' from a bar I put up in the garage, but nothing seems to make any difference. I'm best when I'm out walking, and worst when I've been sitting too much.

The regular trips for blood tests, clinic appointments and treatment - all just once a month - also remind me of the fact that I have an incurable cancer. It would be difficult for this not to weigh on my mind from time to time.

I have regular contact with my friend, David, and others who he's put me in touch with, we're a little community of myeloma patients who want to understand what life means now, and to make the most of it. This is encouraging, and it's good to hear stories that confirm that whilst it's a difficult disease to combat, treatments are effective in a lot of cases and people are living well and for a 'good' number of years.

Along with the nagging pains (which, I must stress, are quite mild and manageable), I sometimes feel really worn out, but that could just be my age! I do, however, get frustrated when I run out of energy but still want to be doing things - it often happens towards the end of the day, then I don't feel able to get anything done, or to be good company with anyone that we're spending time with.

The South West Coast Path

In May this year I started walking the SWCP with the aim of covering all 630 beautiful miles over the next 3 years. I love striding out on the path, exploring coves, climbing cliffs, wandering through woodlands, swimming at a wide variety of beaches, meeting fellow walkers and having a sense of purpose (keep going) and direction (keep the sea on your left (I'm doing it in the opposite direction to the norm)).

On the one hand it seems exciting planning to walk the SWCP over 3 years, basically gifting myself around 60 days out in my favourite place, and on the other hand it seems ridiculous planning something of this nature when my health is so uncertain. I realise that my plans may be interrupted by periods of treatment, I just hope that I don't have any weakening of my bones, especially in my legs as they're so handy for walking!

Esther has joined me for some great days of long beaches, stunning cliff top views, changeable weather, crystal clear water, windswept headlands, wave filled caves, perfect skimming stones, isolated day marks and more steep ups-and-downs than you can shake a stick at.

The actual walking is tiring, but I can happily walk 10 - 15 miles in a day, with all the ups and downs of the path. So far, we've had 3 trips away staying in caravans with me walking a new stretch a day for 3 days. I've also clocked up some more local sections over the summer holidays when it's more expensive to stay in Dorset or Cornwall.

Looking ahead

I've got mixed feelings about the coming winter, the summer doesn't seem to have arrived in quite the way it did last year, but I'm hoping to remain well on the maintenance treatment.

 

Running the Race

16^th August 2024 - 8 months ago

The first 2 posts in this blog, back in late 2018 and early 2019, both mentioned running. I'd always maintained that I hated running, but to encourage some friends who were training to run the Torbay Half Marathon in 2017, I thought that I'd give it a go, and to my surprise I really got hooked on it.

As well as lots of runs by myself, and the 'half', I really enjoyed trail running events, usually 10km or 10miles, in the glorious Devon countryside. My most regular runs, and most social, were definitely the regular 5km, free, parkruns, normally running in Parke or the Torbay Velopark in Paignton where I first encountered parkrun with some friends and colleagues from Lovell Rugby.

I really enjoyed the relaxed nature of parkrun, they often say that you're only racing yourself, it's timed for you so you can try to improve on your personal best. Of course, being a competitive species, there's also an element of racing against each, and I soon became friends with those who were finishing just before or just after me.

When I was diagnosed with myeloma in March 2019 and suffering with cracked ribs, vertebrae and sternum, activities like getting into bed and walking across the room were challenging, so the thought of running was a very long way from my mind. The doctors said that I'd get my bone strength back after the treatment, but were always pretty cautious about any strenuous activity. Most of the advice for myeloma patients is aimed at older people seeing as it's a disease which usually affects people in their 70s, I was given a leaflet which recommended only walking on flat, smooth surfaces, avoiding rugged terrain to limit the risk of falls and fractures.

In the last couple of years, I've met (generally online) lots of younger myeloma patients, there's a regular "50s and Under" support group for which I definitely meet the entrance criteria. It can be sobering (to say the least) with people talking about lesions in their bones when the treatment stops working, and broken bones when their myeloma isn't under control. Last month we heard the news that one of the group members had sadly died, a stark reminder that despite the many available treatments, this is still an incurable cancer.

Recently there was an inspiring talk by a lady who was diagnosed with myeloma when she was about 6 months pregnant, she had to wait until her baby was born before immediately starting treatment. She had such a positive and determined outlook, through many trials and set-backs, it reminded me not to allow myself to be limited unnecessarily but to strive to make the most of all aspects of my life. This has particularly encouraged me with some work projects, as well as physical activity.

Get on with it, Rich!

I'd hoped to give running a go last year, but other than a couple of little jogs by myself, hadn't fitted it in to a busy year. As 2024 arrived, I was determined to get on with it, so fresh into the New Year I headed down to the Parke parkrun with Esther & Heidi and gave it a go. I planned to take it very easy, be focused on my back in case I had any pain or twinges there, and be really careful not to jar anything. With 100 people around me, on a familiar route through the beautiful (a.k.a. hilly!) woodland, I found myself caught up in the experience and I was elated to be able to run the full 5km course without any issue, and in a reasonable time. My fitness was OK from cycling, but my legs hadn't run for 5 years, so it was a bit of a shock to that part of the system! I was feeling very emotional when I crested the last hill before the finish line, but fortunately bumped into some friends and was distracted from the personal significance of what I'd just been able to do, otherwise I would have burst into tears!

50 Milestone

Esther & I really got into parkrun-ing over the next few months, and I've also run with Darren in a couple of other local parkrun venues, as well as with my friend Claire whilst in London, and an international parkrun in Copenhagen when we were there to see Antytila in June. With the 30 or so parkruns that I'd enjoyed before being diagnosed with myeloma, I've now completed 49 and am looking forward to reaching the milestone of 50 parkruns next weekend, 24^th August.

"What's all this got to do with me"

Yes, you guessed it, I'm telling you this to invite you along to join me in celebrating this achievement! Parke has very much become my parkrun home, so please do join us for a run / jog / walk through the rugged woodland. It's a sharp 9am start in the Parke estate, but I'd arrive at 8:30am to get parked, in position and warmed up. Be aware that there's a major road closure in Station Road, Bovey Tracey for the ongoing gas works. We'll go for a coffee in the lovely Home Farm Cafe afterwards, so do feel free just to join us there from 10am-ish if that's more your thing.

If you're not in the area, but are close to a parkrun, then sign-up and go along if you can, let me know your barcode number and I'll collate our runs together, wherever you are.

Running again has really changed my attitude to my physical state, so whilst I'm often still cautious - and anxious - about my bones, with aches and pains triggering fears of lesions and fractures, I am much more relaxed about movement and much less guarded when engaging in any physical activity. A little bit more of the "old Rich" has been set free.