Yesterday I met with the team at St James in Leeds, and the transplant process is scheduled to start on the 8th April, just a fortnight away.
My biggest concern was the outcome of the latest bone marrow biopsy a fortnight earlier. If the blasts (wonky cells, as my daughter has been using to explain what’s wrong to my grandson) were over 10% I would need some chemotherapy to reduce them. The last biopsy in October last year put them in the 5% to 10% range, and as it was some time since that biopsy I was worried they might have gone up. So, it was a huge relief to hear they were below 5%, in fact had gone down a little. I’ve had no treatment other than platelet and red cell infusions, so this was a pleasant surprise.
Naturally the emotions are a real mix. Of course there is anxiety over the process and the risks. There is also relief that there is a path forward. I’ve been sleeping well, kept up my meditation practice, and there is plenty to keep me occupied.
The last six months have been difficult. Various plans got cancelled, and we had to step back from a lot of our social activities to minimise the risk of me getting an infection. It took a while to settle into the pattern of testing and infusions which dominate the planning for the week ahead. On the other hand, a whole new world has opened up – I worked for the NHS for 10 years, and have navigated its complicated landscape as a carer, but I now have a deeper appreciation of a service that has kept me alive for the last six months and has found a treatment. I am deeply grateful for all the care, for the support of everyone, and the amazing generosity of a donor I have not met.
I will need a PICC line inserting, which is a catheter so that they can give me drugs, infusions, and take blood samples without sticking needles in me two or three times a day. I will keep up with my limited exercise schedule to stay as fit as I can. I will isolate as best I can, other than two or three trips to hospital in the next couple of week. Then I will pack my bag – yoga mat and meditation cushion included.
I will be confined to one room for at least four weeks. There will be some very difficult days, I have no doubt. Visitors will be limited, but I will have internet access and be able to keep in touch with people that way. Meditation retreats have helped me work with difficult emotions and isolation.
I have started a blog to document my experience of MDS. I will post there as and when I can. I will, from time to time, put a note on my WhatsApp channel.
So, St James, in Leeds, here I come.