15. Enjoy the view

Mile 12 – Smooth surface and not many hills.

Although sometimes marathons might go through some uninspiring industrial areas, they usually have some beautiful scenery to admire as well. Trail events like the Three Forts look across the South Downs, and Beachy Head has the Seven Sisters. Make the most of the views as you go along or you might as well be on a treadmill.

As I’m growing accustomed to the routine of the drugs and their side effects, I am better able to take trips out, enjoy myself and relegate the treatment and the side effects to second place. The main issue this week is still the light-headedness, caused by anaemia, which is a side effect of the myeloma itself and of the myeloma drugs (the Daratumumab, Bortezomib and Thalidomide). It doesn’t sound as if I can do much about it (although I haven’t tried Virol yet). I am learning to live with it and take a rest if I need to, and I am confident that I am unlikely to suddenly pass out.

This week, as you will see, I spent a morning at the Bluebell Railway with my camera. Did you know, that is where the cover picture was taken for Elton John’s Tumbleweed Connection album? One of the volunteers told me that they have recreated the scene with the same advertising signs that were there fifty years ago when the picture was taken. They did write to ask Elton if he would like to visit on the occasion of the anniversary, but they didn’t receive a reply. He was probably preparing for that concert I didn’t go to.

On Wednesday I had the last treatment of induction cycle 3 at the hospital, just Dexamethasone and Bortezomib, then a meeting with the consultant, which provided a lot more information.

My paraprotein level (those are the bad, cancerous immune cells) is down to 1.8g/L (from 16.2 on diagnosis). Although that result is within the Very Good Partial Result target range, he emphasised that lowering the paraprotein level as much as possible is much more important than finishing the treatment quickly. The next stage after induction is ‘harvesting’, when my stem cells will be collected in preparation for the stem cell transplant. There isn’t a filtering stage as part of that process, where they can eradicate all the cancerous ones, they just take whatever stem cells are there. There will probably still be some cancerous stem cells in amongst them, but I need there to be as few as possible so that when my immune system is rebuilt, it will last a good few years before the cancer is significant enough to cause a problem again.

The consultant pointed out that both of my first two cycles were interrupted, first by dropping the Lenalidomide after a few days when the rash developed, and then by the two missed weeks in April when I was too ill for chemotherapy. Depending upon future blood results, I might need a fifth induction cycle, so that would mean adding another month to the plan. He also checked over my illustration of the plan (with which he was most impressed), see below, and helped me to understand where there will be gaps between treatments, and a prolonged period after the stem cell transplant for recovery. After a career in project management, I am used to extending plan durations, so that is what I have done, taking it in my stride, so to speak. The marathon analogy has certainly stretched to a pretty long ultra. Although the treatment plan carries on for a year or so now, there will be opportunities to go away for a break in the UK at times, e.g. during the harvesting and towards the end of the stem cell recovery. I will just need to be careful not to pick up infections as my immune system will remain compromised.

A very positive piece of news concerns my prospects for the future. He expects that I should be able to achieve my previous levels of activity as a result of the treatment, that is why we are going to all this trouble. Having said that, my bones will always carry the scars of the lytic lesions caused by myeloma and they will show up on x-rays and scans. For some reason he looked at me and said it’s like syphilis, it never goes away.

He also emphasised the importance of exercising and having good core strength for the future. I have already embraced this, as I have mentioned in previous posts, and it has even been suggested to me that I am exercising more than some of my friends and family. Surely not! I have been following my stretching and strengthening routine for 40 minutes each morning, and I am noticing how easy it is to lift myself up from the sofa. Then I cycle with my bike on the turbo trainer and my phone attached to the handlebars, this week playing a CTXC training video on YouTube. Surprisingly, I feel compelled to put in extra effort in a higher gear when told to do so, even though I could just swap over to a sitcom. It is just as well that I am retired, I don’t know how I would find the time for all this if I was working.

Otherwise it has been another full and active week. Dog sitting (or rather taking my son’s dog out to the pub for lunch); another lunch with an ex-work colleague who has just retired; visits from a running club friend and another couple of friends for a curry takeaway; then a delicious barbeque on Sunday, while Sue performed Verdi Requiem with the Really Big Sing choir at the Royal Albert Hall. (If you don’t know this, have a listen, you have probably heard Dies Irae in adverts or as part of the background track to a horror film.) So, I’m certainly enjoying the views as the opportunities arise.

Thanks for reading and take care.