I had my first visit to the hospital as an outpatient this morning, and went there with Dad. It was definitely strange returning as an outpatient after having spent six weeks stuck in a room. I wore a mask as the outpatient waiting area can often get crowded, and you don't know if anybody my be harbouring a cold or flu. Most people don't take such precautions, but I felt a lot safer doing so. Just before leaving Dad shaved my head so we got rid of any little pockets of stubble on the head. Now you can see your reflection in my chrome-dome. Maureen the secretary didn't recognise me when I presented myself for the appointment. I'm not surprised, but it was quite funny seeing people's reactions to this baldie with a mask.

It's also a different feeling walking into outpatients as a baldie, since everyone else who is waiting for the appointment can tell you've had chemotherapy of some kind. It's like being a war veteran who has the scars of battle (no hair) to prove this. I remember looking at other baldies who had clearly gone through the same thing in the past when I used to attend the clinic as a pre transplant patient, thinking wow about what these guys must have gone through. I remember admiring the fact they were still alive. I would often try to listen in on conversations these people had trying to hear about the interesting bits of the operation, but really I never wanted to know the nitty-gritty as it would spoil the surprise for me. It was always uplifting to see someone who looked healthy despite a lack of hair, as this was clear evidence that the transplants can work. What worried me were the occasional people, (usually the older ones in the 30's or 40's) who looked a lot more frail and stooped when walking, often with a cane.

Having the bloods taken was a cinch as there were no needles involved. As I'll be going back for regular visits, the hickman line will stay in so my veins don't get over used. At the appointments the cyclosporine levels are monitored in order for the doctors to see whether the dosage needs to be increased, reduced or kept constant. To do this we need to miss the morning intake of cyclosporine otherwise the reading will be spiked. I wasn't told about this therefore I'll have to wait until the next appointment on Monday before finding out how my cyclosporine levels are doing. One benefit from the transplant is that you don't have to sit around for hours before seeing the consultant, you're seen a lot sooner.

This time I saw Dr. Kanfer who was the consultant on ward round during February, so I knew him fairly well. It was an interesting and informative consultation. My bloods were doing fine although my white blood cell count and neutrophil count had dropped somewhat to 1.3 and 0.71 respectively. The haemoglobin was at 10.4 which was good, and the platelets had risen to 113. The normal range for platelets in an adult is 120 - 400 so this is a good indicator that the engraftment is doing well. It is apparently normal to see fluctuations in the WBC and neutrophils, therefore the Dr. Kanfer wasn't concerned about the fall in these today. All my other blood levels and various indicators were normal, and he reaffirmed his satisfaction with my progress to date. He also reiterated that just because I'm feeling fairly good now, this will not have a bearing on the longer term graft vs. host effects. There is never any pattern and it may even take another month before the GVHD manifests itself in a tangible form. He also told me to expect to be readmitted at some point over the next three to six months, as it's nearly unheard of for someone not to be. Well I'll try my hardest to be that someone, cause if it's nearly impossible then it's definitely possible...watch this space. I learned that I would be taking antibiotics for the rest of my life, and the role some of the long term drugs would have in preventing lung related infections that can occur with GVHD. The reason for the life long course of antibiotics is due to the spleen not functioning as well after the transplant as before. Since the spleen protects against bacteria, without help from antibiotics one could catch the neumacocus bacteria which can cause problems with the lungs. Finally the doctor checked my drugs chart to see if it needed any changing, but for the time being will remain the same. I'm taking a cocktail of six different drugs each day in addition to a host of nutritional supplements such as minerals, aloe vera, selenium ACE to help with the effectiveness of the gut and immune system.

After our consultation, we popped downstairs to visit the ward. I wanted to say hi to the nurses and to visit Alison, who was next door to me and a couple of weeks behind in terms of treatment. It's funny coming to the ward as an outpatient as you're no longer one of 'them'. I had to scrub up and wash my hands and don an apron before entering the ward. Alison was curious to know what it felt like being in the real world again, so I assured her it was good but just as tiring as being on ward. I also learned that the person who had the bad problems the day I was released had actually improved and was much better, which was a big relief, as at the time the situation sounded terminal.

It was only after we arrived back home that I realised how tired I was. It's still difficult not to take things for granted, but spending the morning driving to the hospital walking about and talking enthusiastically to people really takes it out from you. I passed out on the sofa downstairs for a couple of hours.

I lost around 2st or 12kg whilst at hospital, although some of that was extra weight that I put on especially before the transplant, but what I never appreciated was how emaciated I know look. With the full length mirrors at home, this was the first time that I'd been able to take a look at my body, and I couldn't believe what I saw in the mirror. I realised that I'd lost quite a lot of muscle, but I can never recall ever looking like this in my life. It looks like I've got somebody else's body. My arms and legs have withered away, so now I'm just slim. This doesn't worry me, as I know I'll be able to bulk up a bit once I've got better, but I'm sure that in the long term I'll have a slighter physique and be less muscular than before. It's not a bad thing and something that I've no anxieties about. After all your body is just a shell, and so long as you're taking good care of it with good nutrition and exercise, as long as I'm able to go windsurfing and kitesurfing as before I don't care how I look, just as long as my lungs don't get GVHD. In fact I'll probably have a lot more endurance than before if indeed my body retains it's current form, and this is no bad thing.

On the diet side, I'm still suffering from ATS - altered taste syndrome (something I've just named myself). It's really affecting my ability to eat anything with meat whether it's chicken, bacon or any other meat, I just can't eat the foods that I used to enjoy. To make things worse, my sense of smell isn't affected so I'm able to smell all these great meals, but they just taste foul. My father has had to get used to my excitement just before starting a meal only for me to take one mouthful and say, "yuk!". Now it has become a mission to find things that I'm able to eat, and this isn't easy or cost effective. The best things tend to be cold, like milk with cereal, ice cream or milkshakes. I've just found that honey roasted nuts taste ok, so slowly we're building a little database of what is acceptable and what isn't. This feels like a form of torture, when you're able to smell your favourite dish and not able to eat it. At least this will keep me from eating all the pies, but I can't wait for the taste to come back. That will feel as good as the day I left hospital.