11. Concentrating on form

Mile 8 – Back on course and it looks like a flat road ahead.

To avoid thinking about the long way still to go, I would try to bring my mind back to the running basics, known as form. Keep my shoulders relaxed, lift my heels so my legs easily swing further forward, imagine a thread from the top of my head holding me up to keep me straight yet leaning forward a few degrees. Often I would listen to music at a fixed number of beats per minute helping me keep my cadence steady, left, right, left, right, breathing in for two and out for two.

After a couple of weeks where it all went wrong, I’m back on track. Talking with my consultant it looks as if the rash was probably related to Lenalidomide and the rest was a virus picked up due to my low immune system, perhaps coupled with the sudden withdrawal from my Dexamethasone steroid boost. Certainly none of it was a direct result of the cancer nor were they common things that my medical team had come across before.

I had some more common side effects including loss of taste, dry mouth and dry eyes. For a couple of days I have had double vision – this was a surprise and it was a bit alarming when travelling in the car to see cars coming towards me on my side of the road. (Don’t worry – I have only been a passenger.) However, after all the other problems, I now feel confident that as these things come up, they will pass pretty quickly.

My treatment went ahead this week. Although I skipped two weeks, we are treating this as if nothing went wrong and carrying on counting the days, so that was day 22 of cycle 2. The decision to do this is a subjective one for my consultant, but I suppose it helped that I have had such a good response to the cancer treatment so far, which I mentioned in the last post. My cancer cells – paraproteins and light chains – had dropped way down in five weeks to levels that my peer buddy said had taken him 9 months to achieve.

In order to help counter the come down that I usually experience after my Dexamethasone has worn off (my hangover Saturdays) I’m now being given a low dose steroid, Prednisolone, to take on days when I’m not taking Dex. Hopefully this will even out my energy levels during the week.

Next week I will start cycle 3 but replacing the Lenalidomide with Thalidomide to hopefully avoid the rash. Dropping Len is a bit of a shame because it is ideal as a maintenance drug, one that I could take regularly in the long term. We will try it again after my stem cell transplant.

I’ll be back to concentrating on the basics now, some of which have taken a back seat in the last week. I have been doing quite well at drinking 2-3 litres per day but I have lost a lot of weight, from 80 kg (12st 8lb) down to 74.5 (11st 10lb), so I need to eat lots of high protein food, exercise and keep taking the tablets. I went through my exercise routine with much more vigour than usual today, I am building up my step count and returning to cycling on the turbo trainer. On top of this I’m hoping to pick up where I left off with the socialising.

I thought I would mention my method for keeping track of my medication. With so many tablets to take each day, changing each week, I soon abandoned the thought of keeping track in my head. Those multi compartment pill holders would need to have massive sections for some of the days plus I didn’t like the thought of dropping the nasty ones like Lenalidomide or Thalidomide somewhere they might contaminate. Instead I drew up a Word document with a colour coded table showing what was due when. If anyone else with Myeloma would like a copy, here is a blank. You have to copy the formatting to the right cells for your drug schedule and fill in the right drugs, but you are welcome to use it if you have the patience. I have found it useful to tick off the drugs I need as I take them out of the boxes, cross off optional ones that I missed and to keep a record of what I have taken. I have had to go back and check sometimes.

A few people have told me that they think my blog is very well written. Well, that’s because Sue is a proofreader and I always ask her to give it the once over before I post it. Thanks Sue, you are proving to be a wonderful carer and you have revealed a hidden talent for mowing the lawn. You have missed out on a lot in these last few weeks as we have had unexpected trips to hospital causing you to skip choir practices and the main performance this weekend. We will have to make up for it with a big holiday.
This month’s medication is Zoledronic Acid (Zometa®) which helps with my bone damage.

This is taken once a month at the beginning of the cycle and delivered as an intravenous drip into my arm. It only takes ten minutes and I can enjoy my coffee and biscuits using the other hand.

To remind you, normal bone remodelling works like this. We all have those little osteoclast monsters chewing our old bone away as we speak, but it’s okay, our osteoblasts are building us some lovely new bone to replace it. Myeloma had caused my osteoblasts to stop working so my bone was only being destroyed, and it’s called Multiple Myeloma because it was happening in lots of places all at once.

Zoledronic Acid is a bisphosphonate and it works by binding to the calcium in the bone then inhibiting the activity of osteoclasts to interrupt bone breakdown.

To put it in perspective, I’ll only be taking it twice. My treatment was delayed until the second cycle because I had some dental implants in January and we wanted to give those a chance to heal. I am also taking some big calcium tablets every day to help with bone repair. Best of all, as the number of cancer cells in my blood has reduced, it will allow my osteoblasts to start working at repairing bone again.

This week’s good news – as my consultant predicted, the pain in my hips and back seems to be receding, perhaps as a combination of the falling number of cancer cells, the Zoledronic Acid and the days of solid rest. My stand up routine (mentioned in post 8) isn’t required any more, and I am more agile than I have been since last summer. Today I managed to dry my feet after my shower by just reaching down to the floor rather than having to rest my foot on the WC.

I’ll gradually try to walk further, see how that goes. I made it as far as the barber’s yesterday; I was about a month overdue for a trim.

I should also mention the Myeloma UK peer buddy scheme again, which my nurse has been recommending to other people at the hospital. It’s a great way to know you are not alone in this and to find out what to expect. This week my buddy and I talked about the Myeloma UK London to Paris bike ride. It is the organisation’s flagship fundraising event and is amazingly well organised with motorcycle outriders, bike engineers, full support and accommodation. Imagine what it must be like cycling on traffic free roads into Paris as one huge peloton to finish at the Eiffel Tower.

Not this year (as I’ll be recovering from my stem cell transplant) for me, but maybe September 2024. Anyone can take part. Anyone want to join me? There is a minimum sponsorship level and entry fee but note that e-bikes are allowed.

My taste seems to be coming back and I may soon be able to eat chocolate again. I have a pile of Easter eggs and there is only one way to find out.

Thanks for reading and take care.