yup. You know what that means.. I’m back in BMTU! When I left hospital after my transplant, I had a rash on my arms which they weren’t too bothered about because it was in a really strange place for GVHD, I just had to keep an eye on it and make sure that it didn’t spread. It did. It started showing up on the outsides of my calves and on the bottoms of my feet, of all places. The rash on my feet started driving me absolutely mental because it constantly itched! After a couple of days of itchy feet, we thought we better let the doctors know what was going on. So off we went to the ward so the registrar could have a look. She automatically diagnosed me with GVHD due to the fact that you generally don’t get drug reactions on the bottom of your feet. So my ciclosporin dose was upped and on prednisone I went. That next week I had a clinic appointment with Steve so he had a chance to look at the rash for himself, and he wasn’t so sure. It wasn’t on my palms or body like the GVHD rash usually is when it first crops up, and it also didn’t look how the rash is supposed to. He referred me to a dermatologist that afternoon and I had a skin biopsy and was given a plastic bag full of aqueous creams and moisturisers and told to stop using soap to prevent anything having the opportunity to agitate my skin further. I’m still staying away from soap, which is just weird! The doctors and nurse hear are always at you about hygiene and washing your hands thoroughly with soap.. and now I’ve been told to stop doing that. Very strange. A few days later I had my second clinic appointment of the week and the results of my biopsy were back. Inconclusive. There was a suspicion that the rash was because of a reaction to one of my drugs called cotrimoxazole but it didn’t point to that either. I’m off that drug now obviously. But I’ve heard of a few other people who have reacted to that drug during their treatment too, which is interesting. So. We’re unsure if I’ve got GVHD.. or something else. But that’s apparently how I roll! I never do anything by the book. Weird rash that doesn’t look like anything in particular, no apparent reason for the weird rash. Ugh. But the prednisone seemed to be helping and over the past week I’ve started being slowly weened off them. My dose was 30mg, then it was 20, now it’s 15. This past week has actually been such a drag. I thought I was doing so well because I seemed to have a lot more energy than I thought I would at this stage after my transplant, I was eating really well. “Seemed” is apparently the key word in that sentence. I seemed to have all that energy and appetite because I was on steroids. I hadn’t figured that out at the time, but now I know because I’ve been feeling so flat, unmotivated, my energy levels have been pretty non-existent and I just can’t be bothered eating because I just don’t feel hungry. I’ve really got to make sure that I have breakfast and lunch and luckily by the time dinner comes around I am actually hungry. Coming down off the prednisone has also caused havoc with this rash! Its come back and this time it’s on my hand. Down the inside of my right thumb and it runs half way up my index finger. Again, not a normal place for a GVHD rash!!! I’ve only got a little bit of a temperature. It was 38 yesterday morning when I took it before I came in and then last night it was done to a normal 36.5. This morning at 6am it was back up to 38 again but now it’s down to 37. It doesn’t know what it’s doing! So because I’ve got that temp, I’m having IV antibiotics and had blood cultures taken yesterday from my arm and my line so they can tell whether the infection is in my line or in my body. Mark, the doctor who I was talking to yesterday, is assuming that there may be a wee infection in my line because I don’t have a cough, I’m not sore (a part from achey from coming down off the steroids), I’m not vomiting and don’t have diarrhoea. Since my temp is pretty much sitting at 38 and not going higher, I’m not too bothered by it. For one, I can’t feel when it’s up because 38 is hardly a temperature and because it’s not going up, it must mean that whatever the infection is, wherever it is, it can’t be that bad. I’m more just pissed off because that’s the only thing that is keeping me in here! Hopefully I’ll only be in for a couple of days. I’m in the four bedroom room for the first time since my first diagnosis where I can actually vividly remember coming into the room after having a shower, not an overly lengthy one, just one long enough to have enjoyed it. I can’t remember who else was in the room, but there was this old grumpy man who said to me “oh about time.. I’ve been waiting for 10 minutes!” Fuck knows what was wrong with him, obviously he was sick but I was a young teenage girl with cancer who was finally able to have a long ish shower but because he was old.. I wasn’t supposed to be doing that. Anyway, the people in here this time are a lot nicer than him! It’s very weird sharing a room with other people though. But I’m not neutropenic so I don’t need to be in an iso room.. and there weren’t any free yesterday anyway :( I’m so tired today though, so I don’t think I’m going to end up being overly social. I was ready for a nap at 10:00am but thought I better not because the doctors would be around soon.. it’s 12:21pm and I still haven’t seen them. Could’ve slept. I’ll just have to wait until later now.
