Day 23, (Feb 24th) and didn't have a very good night sleep. There was a lot of commotion during the night as one of the patients was shouting, wailing and pressing the nursing buzzer all the time, so I had a long sleep in. Started taking the cyclosporine orally. I think it's the cyclosporine that has changed my taste and made everything taste metallic as that's exactly how the pill and the packaging smells. It's quite an unpleasant taste but better than having it through the drip over two hours.

The feet especially the toes have become even more sensitive today, and the hands are still pretty sore, so I'm unable to clench my fists at the moment. Any dexterous activities are pretty difficult which limits what I'm able to do comfortably. The sensitive feet don't help either.

The little red spots that appeared on my arms - Paticiae - have now spread to my feet and lower legs. Good news was that all the blood counts rose slightly today, so the neutrophils are now at 0.24. Skin is getting drier but the mouth is getting better. This clear evidence of GVHD taking place thus is a good sign, so long as it can be kept to a minimum.

By Monday morning the hands and feet were feeling even more sensitive, about as painful as they have felt so far. I was feeling a little light headed although not as bad as in previous days. Once again, I went through my usual routine of spitting out the phlegm from the throat that accumulates during the night. This triggered the wretching that makes me throw up, but since I hadn't had anything to eat until then, I was vomiting on an empty stomach and although nothing comes out it's still an unpleasant experience. I had to lay back down on the bed, take anti-sickness pills and wait a while for the stomach to settle.

This resulted in a 'lazy' day were I spent most of the time lying in bed. I had been experiencing some pains round my liver and the doctors confirmed that the liver was indeed a little swollen. GVHD is known to affect the liver, so as a precaution I was scheduled for an ultrasound scan for the next day (26th Feb). Since I was feeling light headed, I was encouraged to drink more water as I wasn't getting an adequate intake with what I was drinking, and it was possible that this could have a bearing on how I felt. In fact it is even more important to drink lots of water to clear my system from all the drugs that I've been given over the last six weeks.

Throughout the day, my feet and hands became even more painful despite the steroid cream being applied twice daily. The doctors said they would keep an eye on the hands and feet in case they got worse but suggested that what I had wasn't that bad. GVHD is group into four levels of severity from 1 being low level reaction through to 4 being the most severe and potentially lethal level. So far they say that the rash and pink swelling is a level 1 GVHD, which is the level they would want, as this means there is also a graft vs leukaemia effect (GVL). Ideally the GVHD should be maintained at this level, with the hands and feet clearing up.

Despite the pains, I had similar pains on other parts of the hands the week before and those had since disappeared with the use of the steroids, as although the pain on the hands and feet are more widespread there is still every chance that this could pass soon.

Fell asleep with really sore/tender hands and feet but had the best night sleep so far during my stay and felt like I'd actually slept the whole night rather than in short stints. The GVHD this morning (26th Feb) on the hands and feet wasn't as bad, and I had noticed a slight reduction in the discomfort and pinkness on the hands. The palms were very good and the patichiae on the legs had not progressed which gave me a bit of hope regarding the spread of the GVHD. I did drink quite a lot of fluid last night which is maybe why I felt more together in the morning and also why the pains in my liver had abated.

The doctor still reckoned that the liver was still a little tender so the planned ultrasound would still go ahead, but seemed to be pleased with everything else. I went back to sleep until 10:30 and had breakfast. Eating is now almost totally normal so I'm not so sensitive to what I'm eating. I still have problems with the hospital food, so the sooner I can get out of here the better. Feeling pretty lethargic I lazed around in bed realising that this could be making more tired, but still relishing the comfort of the bed so I stayed put.

I was whisked off for the ultrasound at 4pm and realised that this was the first time in 27 days that I had left room 3. I went up in the wheel chair as my feet were still very tender and too painful to walk on, but it was great to feel the air in the face and a bit of space for a while. Someone said this experience is a bit like big brother, which wasn't far off the mark. Everyone is watching you and your progress with the difference that you are confined to a room and the challenge is to walk out alive.

The ultrasound went well and the doctor had a look at the spleen, kidneys, bladder, stomach as well as the liver and concluded that what he saw was normal function and no visible anomalies. That doesn't mean there is nothing wrong, as the GVHD could be manifesting itself on a cellular level that the ultrasound can't pick up, but there were no blockages or strange objects, and clearing a good sign.

The pain in the hands and feet has reduced notably through the day, and although still very tender don't feel as sore as last night, which I must say was the worst so far in terms of pain to the hands and feet.

The bloods today have also shown promise with the neutrophil count rising from 0.24 to 0.30 so in general things are still looking good. With a bit of luck it may just be possible that I could be home within two weeks, although I'll still have to be extremely careful with what I eat and where I go, as the first 100 days is the critical period. Once through the 100 day barrier, then you can start to think long term with respect to a good recovery, which means there is still a long way to go.