29. Are we nearly there?

Mile 26 – Nice and flat and easy.

My original estimate of 26 weeks for the treatment was way out. I probably have another 26 weeks to go until, all being well, I start maintenance treatment, but there is no point in wishing your life away. When running a marathon, you try everything you can to avoid thinking about how far there is to go. Better to appreciate that there can be a lot to enjoy during each mile.

As I mentioned previously, my G-CSF injections have started this week, to make the stem cells grow like crazy so that they burst out of the bones and into the blood stream, ready for collection (apheresis) next week. I am taking 780mg of Filgrastim (my brand of G-CSF), a dose prescribed for my weight, over a four day period. I have two syringes each day: one 480mg and one 300mg.  The packs are stored in the fridge until we take the day’s dose out for 30 minutes to warm it up to room temperature prior to the injections.

My Clinical Nurse Specialist (CSN) told us what to do, and referred us to some videos on YouTube, plus we found some good written instructions. We were given some spares in case of emergency, but were told they were not to be wasted, for example by practising on oranges. We just had to get it right first time. Armed with alcohol swabs to clean the skin, we went to work as a team: I did the first one on my right hand side, then Sue the second on my left, in each case grabbing a couple of inches of skin from my abdomen, then jabbing in the needle.

Each syringe is prefilled and spring loaded, so once you have finished and you release the plunger, the needle disappears inside the tube to avoid any accidents. Each one needs to be a few inches from the site of a previous jab, but fortunately there is plenty of skin to choose from. I have been told to expect some bone pain while taking G-CSF, as the stem cells move out of the bones: it should become worse over the four treatment days, but soon pass when it is all over. I’m armed with some Co-codamol, but I’ve not had any trouble for the first couple of days.

We had a great zoom call with a physiotherapist, who talked both of us through the stem cell procedure, and answered lots more of our questions. (It’s not clear why the physio had this job, but she was excellent.) I have mentioned that I’ll be staying at the Cotton Rooms for ambulatory care, only being taken into the main hospital as an in-patient if and when I start to feel really bad. Apparently 20% of patients manage to stay in ambulatory care throughout, despite the inevitable fatigue and susceptibility to infection. In theory, Sue can stay with me throughout the whole treatment, as long as things go well. There are even pull out beds in the hospital room if I am admitted, although I doubt that would be a great idea for an extended period. I will probably be well enough to go for long walks around Regents Park for the first three or four days, before my immune system disappears and I start to feel very tired. While we are up there, Sue has a list of good bookshops to visit, as well as plenty of museums.

We also know now how we can deal with the practicalities of feeding ourselves, washing clothes, and how many pairs of pyjamas I’ll need. I am compiling a detailed list of things to take in with me, and feeling well prepared.

In the intervening weeks I have a couple more visits to make to UCLH, but in between those I’ll be working hard on improving my fitness. I’ve a new exercise programme from the UCLH physiotherapy team. It is rather like a circuit class, and twice a week there is a Zoom call to practice it as a group. While the organiser was busy helping people log in at the start of the call, it was good to talk with the other Myeloma patients who are at various stages of the stem cell transplant process. The exercises are quite strenuous, and I’ll make a point of keeping a towel close by.

On top of that I’m still cycling in the garage, and taking some long, brisk walks. The running club’s walk this week included an opportunity to see the Flying Scotsman come past on the Bluebell Railway.

To keep my energy levels up, I met friends for coffee and a rather nice bacon, avocado and poached egg breakfast to start the week, at Notcutts Garden Centre. Then, to finish it off, a Nutmeg Tree special all day breakfast in Ditchling, followed by tea at Washbrooks.

I also managed to do a few hours of gardening this week, trimming hedges and mowing the lawn. I couldn’t have imagined that a few weeks ago.

Thinking ahead to what could be an extended stay in London, Sue has borrowed Tim’s ten year old laptop, in case she receives requests for work during that time. What seemed like the simple task of installing Microsoft 365 turned into quite a project, as these things do, but it looks as if we are sorted now.

Thanks for reading and take care.