Not posted in a while, writers block and life block you might say! Ive reached a plateau at the moment. The daily aches and pains and nausea are a constant but no worse is the best way to look at it.
Trying to come to terms with the things I am now stuck with is hard, and although I hide it well with the “Im ok” it is extremely frustrating to learn to live with all these things. By now at this stage we all thought I would be doing better but we also knew the journey would be long, just maybe not quite so long and with so many bumps in the road. When people see me out and about I do look so much better than I did I just need the inside to catch up!
Its still the watching and waiting with the donor stem cells. At my last appointment we talked for longer than normal at some appointments your in and out and leave feeling deflated and have unanswered questions. I think the consultant was just trying to prepare me with where we might go next with treatment.
They said we now have one good dose of donor stem cells in the freezer but the question is when to use it. As it stands like everything else my donor to my cells ratio called the chimerism is at a plateau. The ratio is not great but is ok for the moment.
Do they use the cells now in hope that the results go up bearing in mind I've already had four donor top ups with not much effect? If we did this and then my results start to go down it's a rock and a hard place as cells from my existing donor will no longer be an option.
The second choice they are thinking about is more chemotherapy then the donor cells. This will kill off my immune system a bit giving the donor cells a better chance.
Whilst more chemotherapy is something that quite frankly terrifies me, the side affects the infection risks all that goes with it, if that is going to give the cells a better chance then maybe thats the way to go. This would be one type of chemo rather than a horrible medley so will be nothing like last time and is usually done as an outpatient. My consultants will be having their debates about it over the coming months in the mean time it is the old watch and wait. As always with me there is not much previous data for them to go off for my illness compared to other blood disorders, so theres no specific rules as to where to go from here.
On the positive side I continue to do my drawing and painting and photography has been very therapeutic. Even if its just the odd hour here and there I'm getting lots of inspiration for my paintings.
My appointments are still frequent but are slightly further apart which is a welcome break. Every time I go to London it takes me at least a few days to recover in fact anything I do takes me a few days to recover afterwards. Planning is key so I don't do too much in a week. When I have a day out it is usually not really a day out it's a couple of hours somewhere and I suffer for it afterwards. Pacing yourself is a hard thing whilst I want to be out and doing things there is a fine line between too much and too little. Pushing those boundaries is something I do regularly if I didn't then I wouldn't know how little or much I can do. From where I was just after transplant I have improved so much but no where near what a healthy person can do in their everyday life. Exercise is something I make sure to do even if its just a short walk it's so important to keep it up the best I can. For one thing its stress relieving and not doing any does you more harm than good.
So I leave you with the usual uncertain answers as to where my treatment is going. Next up in a few weeks is a general post transplant health check, this will be about everything from daily life to all the different tests I need to check how the main organs are doing. This differs to the normal appointments as they are mainly just about my blood results, bone marrow and any signs of relapse or graft versus host disease.