I am sure other myeloma friends will be able to relate to how difficult it can be when you build yourself up for a procedure and then it doesn’t happen quite as planned. Don’t get me wrong, I can thoroughly understand and I am grateful for, my consultants decision to postpone, which he made with my very best interests at heart, but it is still very disappointing. The harvesting of my stem cells doesn’t come without its own complications, and the first few hours of yesterday afternoon were spent with Jude, my new harvesting expert, who excellently and very patiently took me through the procedures and processes of what to expect over the next couple of weeks. This included the possible side effects of the large dose of chemo and how this and my daily injections worked with my bodies own systems. The chemo is given to kill off my grown up blood cells encouraging the bone marrow to produce the stem cells which are baby blood cells that have yet to be given a job, i.e. become white blood cells, red blood cells or platelets. Timing is of the essence in collecting the stem cells so special blood tests are carried out to establish exactly what stage you are at. The process can cause bone pain especially in the pelvic area where the biggest mass of bone marrow is. Imagine a piece of bone marrow stuffing itself with baby cells pushing themselves against the sides, ready and eager to come out. My special stem cell collecting machine needs to collect these at the point when they are ready to burst out like a fountain, too soon and there won’t be enough in there and too late they will have already burst out into my blood stream. Both the drug I inject myself with and the bodies own system will be promoting the growth of these new baby cells because the chemo has killed off all or most of my grown up blood cells, this is why at this point I am Neutropenic, meaning I have a very low red and white blood cell count making it easy for me to pick up nasty bugs and then harder for my body to fight infection. Because of this I have to be very careful in ensuring as best as possible I don’t pick up a bug from other people or certain unwashed or uncooked foods. It all makes so much sense now and both Colin and I are very grateful for Jude’s excellent use of drawing and metaphors to help get the message across. Whilst with Jude, I also got to see another patient in the full throws of harvesting with blood coming out of one arm and being put through this amazing machine and then fed back into the other arm. So you can perhaps imagine how I felt after hearing all this and confirming all my dates, I then go to see the consultant who thinks we need to postpone the whole process! The reason for his decision is that my peripheral neuropathy has reached such a peak and the side effects of the next chemo could make the pain worse, that it is best to wait until my pain subsides a little. The good news is that he is at least hopeful the pain will reduce if not completely go away. I also discussed with him the idea of possibly retiring due to ill health and although he said he couldn’t decide for me, he thought this was a sensible route to take. Unfortunately with Myeloma it is never a clear picture as to what will happen next and within what time frames. Some people come through the transplant well others don’t come through it at all. There is definitely one clear thing and this is that, at this moment in time, there is no cure for myeloma and it won’t go away of its own accord. So I might as well enjoy the periods of being well, inbetween the times when I will be requiring some sort of health interventions, doing something I enjoy with my husband and family rather than spend these times working at fighting somebody elses health battle. Especially when I am ill and requiring more treatment again I will be back on half pay and after another six months on no pay at all.
Still I don’t have to make any sudden rash decisions I am just chewing over the fat and thinking what is the best for us all, like I said yesterday I wish I wasn’t in this bloody position in the first place but I am, so that’s just that!
I may just stay put today, in my conservatory bed looking out on this magnificent view whilst writing another chapter of my book.
Best Wishes to you all