13. The right kit

Mile 10 – Fairly flat but a change of route.

A marathon is often an excuse for runners to buy some new shoes, usually a month or two beforehand to have a chance to wear them in. Perhaps a new vest too, with the runner’s name emblazoned on the front.

I haven’t needed a lot of kit for myeloma. My first purchase, three days after diagnosis, was a pack of new underpants. You can’t go to hospital with holes or saggy elastic. After that I invested in an electric thermometer, the sort you put in your ear, which has proved very useful to confirm suspicions when I am feeling really ill. Fortunately, it has confirmed I have been okay for the last couple of weeks.

It was day 8 of cycle 3 this week and I learned that I will have a fourth four-week induction cycle. The original plan was for either three or four cycles, but the medical team have been talking about just three up until now. At first I was disappointed but I soon came around to the idea. I can’t complain, lots of other myeloma patients have far more than four cycles. After my two missed weeks of treatment it seems reasonable to have the additional sessions to make sure my paraprotein and light chain levels are as low as they can be before the stem cell transplant.

So, now I need to think of four more marathon analogies as my marathon becomes an ultra. There may have to be some repeats.

It was a very quick session at the hospital this week, only two hours, with just the Bortezomib injection plus the Dexamethasone tablets. I will only have Daratumumab every other week for this cycle. Otherwise, it was the usual routine, and a lovely lunch.

Here is my first attempt to show my progress against the plan, with my best guesses as to how long the different treatment cycles last, and how they overlap with the stem cell recovery. I’ll check with the consultant in a couple of weeks to see if this seems right to him.

After all that talk about healthy teeth in the last post, one of my crowns fell out on Thursday. Hopefully it can be easily glued back in on Monday. As my friend Rob pointed out, if only it could have been done on Saturday, I could have been crowned the same day as King Charles.

Generally I have been feeling much better this week, although on Saturday the hangover effect was back as the Dexamethasone wore off. My son was on his way to the London Beer Festival on the same day. Light headed and a bit unsteady on the feet. I guess we both achieved the same effect by the end of the day.

Prednisolone ought to be this mile’s medication, I have only briefly mentioned it before. Like Dexamethasone, it is a steroid that mimics the action of natural hormones in the body. It contributes towards killing myeloma cells and can make the other anti-myeloma drugs work better. I take a very low dose, one and a half tablets (requiring long enough fingernails for snapping them), on the days that I am not taking Dexamethasone. I was sternly warned not to take both together – who knows what that would do to me. The idea is to soften the come down when the Dexamethasone wears off and most days (except for Saturdays) it seems to work, at least so far.

I’m hoping that Saturdays improve, then I can help out at parkrun, at least with a ‘staying still’ job like timekeeping. It would be a good chance to socialise.

I have managed another week of exercises and cycling, about 40 minutes of each, repeated for five days. Another week of this and I expect my thighs will be like Sir Chris Hoy’s and my biceps like Penny Mordaunt’s.

It has been a good week for going out too, seeing friends in Horsham for lunch on the Bank Holiday Monday, then meeting some other friends for my first ever Friday fish and chips at their beach hut.

Fantastic, summer seems to be nearly here. I have been warned that my skin is more sensitive to sunburn now, so I took the opportunity to dig out my ridiculously huge hat, along with the factor 50. It has been great to catch up with everyone after those weeks of staying indoors.

I also enjoyed the chance to take my camera to the bluebell woods, while the bluebells are still out. I was quite pleased with this shot, using intentional camera movement, giving that ‘impressionist’ feel.

Let’s see what next week has in store, perhaps a bit of gardening and at least one breakfast at the garden centre.

Thanks for reading and take care.