I'm now D+16 (16 days post transplant) and have been home for four days. I hadn't expected the fatigue to be so profound and disabling. Doing any little thing leaves me completely worn out, having a shower, coming downstairs or having a meal. I usually rest in bed for an hour after breakfast just recovering and then have a nap for an hour or two after lunch. I've been going to bed about seven o'clock and either reading or watching something on the box. I'm physically drained but mentally still awake although I'm sure my IQ has dropped to about half what it used to be, I can't remember things like I used to - "chemo brain" the nurses called it.
My other big problem is my taste buds. Food tasted strange until about five days ago when it suddenly changed. Since then everything tastes disgusting and when I say everything I mean absolutely everything. It makes eating a real penance. I've tried to find a word to describe the taste and have utterly failed. Everything tastes truly horrible. I force down food at every meal but am probably not eating enough. My weight is falling which is quite common anyway after transplant apparently. Still, if I could eat better I'm sure I would have a better chance of maintaining it. It is probably one of the immunosuppressant drugs doing this, though it could be a late effect of the chemotherapy or even the disease itself, who knows?
The treatment also causes a myriad of minor side effects most of which are subsiding thankfully. I've had rashes on my elbows, eyelids, knees and wrists due to one of the chemo drugs from about three weeks ago. It is now slowly fading. The rash on the eyelids wasn't much fun. I've also had soreness in some rather delicate parts of my anatomy and that is now improving.
The chemotherapy attacks cells which have a fast turnover rate so this includes the bone marrow of course but also hair follicles (hence I'm completely bald) and the lining of the bowel. This just adds to the general misery that the disease and the treatment causes. Bowelwise I swing between one extreme and the other.
Two days ago I went to outpatients, an exhausting but necessary experience. A great load of blood was taken from my arm for a whole battery of tests. One of these requires blood direct from a vein so they can't use the PICC line unfortunately. Then I saw one of the consultants. My neutrophils have fallen back to 1.5 from 4.0 which was a bit of a shock until it was explained that this was because I had stopped the GCSF when I came home. GCSF is the magic injection that I had for the last four days I was in hospital, it stimulates the bone marrow to produce neutrophils. Otherwise other results were ok. Liver and kidneys are gradually recovering. Nothing doing for the fatigue and the taste problem worse luck.
The good news is, all being well, I can stop one of the two immunosuppressant drugs I'm on in about a fortnight - hurray! In about a month we may be able to start reducing the other immunosuppressant with a view to being off it by late October, even bigger hurray!. Finally my PICC line should be removed in a week or two. I shall be sorry to see it go, it has become like an old friend and a security blanket giving quick access to my veins when I run into trouble. I'm still not very keen on needles despite having lots of them in the past three months.
Many of the other tablets I'm taking I will need to stay on, two of them for life. There is another group of white blood cells called lymphocytes and these protect us against viruses and fungal infections. At present I don't have any of these and it will take a year or two for them to return. In the meantime I remain on full dose antiviral and antifungal treatment. The antiviral is four times a day and they are huge! The average horse would baulk at them! We stem cell transplant patients don't have a choice and have to saddle up and carry on.
I'm not out of the woods yet by quite a long way but have made fantastic progress so far. Thanks for all your support.
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