8. Cross training and avoiding injury

Mile 5 – Some steep uphills and easy downhills

It is easy to injure yourself when doing lots of running, especially on tarmac. Going off road onto footpaths is easier on the knees and mixing in some other exercise helps further, typically swimming and cycling.

I have been working on my stand up routine since last summer. I shuffle round in the chair until both feet are in front of me, parallel, shoulder width apart. Then I lean forward, hands supporting me, stand up straight and hold it there for about 5 seconds while stretching the adductors at the front of my legs. Next, I walk on the spot half a dozen times, just lifting my heels and pushing each knee forward to encourage them to move, then I choose a lead leg and take a tentative step, concentrating on engaging the core and holding myself tall. Once I get going then it’s a bit easier but I know that if I try to cut corners and just stand up suddenly, I’ll pull a back muscle and that takes two days to recover.

This pain around my left hip and leg is likely to be due to the myeloma bone damage, although the MRI scan didn’t show anything especially bad in any part of my body. It improves on Thursdays and Fridays but is worse again on my “hangover Saturdays” (as I’ll call them now), when the dexamethasone wears off. According to my consultant, I should expect some improvements to the hip pain in the next two to four weeks. We can’t explain the two pain free days that I had in my second week.

I’m trying to exercise more. Walking is still a bit limited and 7,000 steps a day leaves my hips feeling quite sore so I’m looking for alternatives.

Back in January, pre-diagnosis, I started swimming again for the first time in ages. I found I could quickly settle into my slow crawl up and down the pool. A few years ago I would aim at 120 lengths and be there for more than an hour, and this year I was getting up to a respectable 60 to 80 lengths. Then, I was diagnosed, the risk of going to a public pool with my reduced immune system was explained and so I am off swimming again.

She’s supposed to be gliding over the South Downs to the coast at Shoreham, stopping for coffee in the Ashdown Forest, perhaps even climbing Ditchling Beacon, but for now she is clamped to a turbo trainer in the garage and not going anywhere. This lovely handmade Mercian King bike was my Dad’s. He cycled from Crawley to Derby to place the order for her, and I inherited her a couple of years ago. She has always attracted compliments from other cyclists whenever I have ridden her, with the beautiful painted detail around the lugs (with the heart shaped cut outs) and those sweeping forks.

My first attempt on the turbo was a 20 minute session on Saturday when I soon remembered the feel of some proper exercise; a bit of a burn in my legs and my heart rate up above 100. I paid for it in the afternoon, by which time I was exhausted for the rest of the day and it was back to bed for an afternoon nap. I can’t tell if it was the usual Saturday hangover or the cycling that did it. On the Sunday my legs and back hurt again, worse than usual, and I was struggling to get up from a chair, so I had a good rest for a couple of days before cycling again, which I managed for 10 minutes on Tuesday, 20 on Thursday and 30 on Friday. I’m looking forward to meeting up with a friend next week who has a similar turbo setup, and getting some tips from him, especially with the line of argument used with his wife that enabled him to keep the bike indoors rather than having it relegated to the garage.

This mile’s medication is Bortezomib (Velcade®), a smaller syringe than last week but with a big story. There are things called proteasomes in all cells but especially in myeloma cells. They break down unwanted proteins in cells. Velcade temporarily blocks their function, killing the myeloma cells in particular.

I have had a small rash around the injection site on my abdomen each week but nothing to worry about (the nurses assured me).

I had not realised that the Myeloma UK charity had such an important role as a champion of new treatments, as well as supporting people with the condition.

Page 18 of the autumn/winter 2022 edition of Myeloma Matters gives the whole story; it is worth a read. In summary, back in 2004 Velcade was the first drug to target myeloma and was approved for use across Europe and in Scotland. However, the National Institute for Health and Care Excellence (NICE) had not approved it nationally in the UK and it was left to individual Primary Care Trusts to decide whether it could be used. By 2006 (just when Dad was buying his new bike), NICE had reviewed it and found it was not cost effective.

After a long campaign involving the Velcade Three, a group of activists to whom I am most grateful, in 2007 the decision was reviewed. Myeloma UK sat around the table with NICE and the drug companies and agreed a landmark deal. If patients treated with Velcade showed a full or partial response then the NHS would pay. If there was no response then the drug company paid. This sort of deal had never been attempted before, but with the cost burden out of the way, NICE approved it in August 2007. The risk-sharing scheme has since provided a blueprint for future drug approvals.

Another eight myeloma drugs have come on the market since 2007 but Velcade remains the backbone treatment, offered to almost 6,000 patients on diagnosis each year.

After lots of hip pain and fatigue on the weekend, we had a good trip to the hospital this week, day 1 of cycle 2. The consultant haematologist answered our long list of questions. The treatment plan is still on course and the blood tests show I’m responding well to the treatment so far.

Throughout my treatment I have to be sensible about my reduced immune system and risk of infection, so I have to wear a mask, and avoid swimming pools and anywhere too crowded. Best news – I can have the occasional beer.

Two new drugs this week, Zoledronic Acid (Zometa®), and restarting Lenalidomide (Revlimid®) which I had stopped in the first week of cycle 1 after coming out in a rash.

I’ve had a good week for socialising, a call with Ian up north, coffee with Mike. Off to the pub on Friday to meet with the Honourable Order of the Curry Club. I made it to the camera club and scored a 20/20 for my street photography effort in this month’s competition, so I’ll share that here.

I wrote off Saturday when I had to abandon plans to see the running club for breakfast. I woke up with a sore throat and the return of my neck rash which I hadn’t seen for a few weeks. I went back to bed and slept all morning. Hey ho!

Thanks for reading and take care.