Peter’s Hospital Diary

I meant to write this up yesterday, but it was such a lovely day that I spent most of it out and about pottering in the garden, doing the odd bit of watering or just enjoying the sunshine!

I don’t know if it is the passage of time or the boost given by the news from the last PET scan, but I seem to be feeling stronger as each day goes by. I am still a little surprised at how thin my arms seem to be, and the fact that I have lost 11lbs since I came out of hospital in February (on top of the 23Lbs I lost in the 12 months previously after the second autologous transplant) but I’m sure I will build my strength up again.

I have been reading another blog by a transplant patient (John, who has commented here and whose link I have added to the blogroll) He has recently been through a tough time in intensive care, and remarked that what he really wanted was to get his life back. I can empathise with that sentiment. Very early on on my cancer journey I had a visit from Tom (Dentist friend with whom I shared a house at Uni when we were students) who very astutely commented that one of the hardest things for some people is the fact that control of their lives is suddenly handed over to the medical team. Once I had thought about it, I realised how true that was, and one of the reasons for getting to immersed in the details of my treatment was to try and get some of that control back - or at least the illusion of some control!

There have been some defining moments on my journey when I have felt I have got my life back. One was last year when I went to a conference in Calpe, Spain. There is a rock there, about 300 metres high (a miniature Gibraltar!) which I walked to the top of one afternoon. It felt quite an achievment and at the top I felt “I had got my life back”! and from then on life got back to normal, diving and other recreational pursuits until the relapse later in the year. I suppose the last “normal” activity was a weekend diving in Plymouth just before I started the last lot of treatment. The next defining moment will be when I get back in the water again!

The rock…

…that I walked up! (April 2005)

Anyway - if you have a moment, do have a look at John’s site and give him some support - I know I have said it before, but it is worth repeating - it makes such a difference!

I see that after an overcast start, the sun is out again - so off to the conservatory and garden!

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I hope you all had a pleasant bank holiday weekend! The weather here was variable, cool on Saturday, sunny on Sunday and variable on Monday. Today started warm and dry, but it is looking decidedly overcast at the moment. Still, it was warm enough to get out into the garden and cut the grass, and I finished running some data cables round the house.

Not a lot to report health wise; I fell good and although my sense of taste hasn’t fully returned, it does seem to be getting back to normal, and my appetite has improved considerably. We went out to friends for dinner on Saturday, Gabor (the ‘John Peel’ of Hampshire - have you visited his podcast yet?) and Caroline - which was very enjoyable! Good menu choice Caroline!

One slight concern has been some swelling of my ankles during the day - particularly the right one, which was the one that used to swell up while I was in hospital because (we think) an enlarged lymph node was affecting the drainage - long term readers may remember me remarking on it at the time. Anyway, I rang Guy’s this afternoon and spoke to Linny (consultant) about it. The feeling is that it is either fluid retention or ‘leaky tissues’ caused by the GvHd but given the results of the recent PET scan, it is unlikely to be anything more sinister, which is reassuring! There are other symptoms of the GvHd returning (although not as bad as before) which lends weight to this theory! Anyway, I don’t have to go up to Guy’s before the next check up on the 8th. As for the GvHd, my skin is still very dry, and although the cracking on my hands is slowly healing, I am now getting cracking and splitting on my feet! But still a small price to pay!

The other bit of news is that the radiotherapy appointments have been put back. This was because I missed the original appointement, and so everything has slipped a week. I’m actually quite pleased as it means I will have the next check up before the radiotherapy might have started, and it will be closer to the expected date of the next PET scan, so the decision could be deferred until after that. While I’m all for giving the lymphoma a good kicking while it’s down, I don’t particularly want the radiotherapy unless I have to. We shall see!

Finally I was reflecting (again) over the last few months, so I thought I would post a recent photograph - taken today..

which you can compare and contrast with this one…

taken on 5th February! (Bit worrying that I appear to be wearing the same clothes… they have been washed in between times!) Biggest change seems to be the hair!

Onwards and upwards!

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