A Week in the Canaries then Back to Reality

Monday 7th to Sunday 20th January 2008

We have a very relaxing and enjoyable week on La Gomera from Sunday to Sunday and it is warm. There is a fair bit of cloud which stops it getting too hot and I quickly discover that I cannot take very much direct sun anyway. In fact I feel the effects of an hour’s oblique morning sun on Monday, despite sun cream, and that warns me off for the rest of the week. I am on Ciprofloxacin - the anti-biotic for my lungs - and the advice sheet warns to avoid sun. So we find terraces with plenty of shade where we sit and read, etc. I still get the benefit of “reflected” sunlight and end up looking deceptively healthy! My appetite is well and truly back and I thoroughly enjoyed the white wine - Torres Penedes Vina Sol. My taste for red wine is still problematic. I have three injections of GCSF during the week to keep my immune system up. I have several physio and coughing sessions, which are tiring but necessary. I also find that I needed an afternoon sleep most days, but that ensures that I enjoy my evening meal and the customary nightcap! We get through plenty of water with me definitely drinking well in excess two litres per day. As the week progresses I notice that the entry point for my Hickman line is becoming a bit sore.

I am back for my clinic on Monday 14th and see Ros Johnston and the team. The good news is that the bone trephine sample taken in December is clear of CLL. It is agreed that my Hickman line is past its sell-by date and must come out. I am given an appointment for Thursday. I am also given a prescription for a week of Flucloxacillin and Augmentine to head off any possible infection with the line. There does not seem to have been any contact yet from Kings about the referral I should be having to the chest consultant, so Ros will pursue this herself. I mention that I had some occasional discomfort in the kidney area while I was on holiday. I am asked to supply a urine sample to check this out and also to give another sputum sample to see whether I have any further chest infection(s). I have put on 1.6 kgs over the past ten days - great! - and my weight today is 74 kgs. My blood results are - Wbc: 5.4; Neuts: 3.8; Lymph: 1.4; Hbn: 10.6; PLT: 110. My Monday is made even better by the surprise arrival for a couple of days of Anna, Nick and Eva. I am trusted to baby-mind Eva on Tuesday morning while Anna and Nick go to a business meeting in London. It is great fun!

I have my line taken out - it is actually cut out! - by Vicky Tindell on Thursday. The local anaesthetic means that it is a completely painless procedure. Tina drives me down and back to the RSCH as I was not sure how it would go. En route I get a call from Tim Godwin asking how things are going for me. I had not previously told him the news of the cancellation of my transplant, so I give him an update. It is great to hear from him and typical that he finds time to think of me. If I am up to it, I am always welcome back. What can I say? It is a wonderful boost to my morale. I weigh in at 74.2 kgs today. Is this progress - or is it holiday food?

On Friday I receive a copy of a letter sent from Jindriska Lindsay at Kings to Paul Hill. I am rather dispirited by its content as it talks of my December CT scan showing deterioration in terms of the bronchiectasis compared with the previous. She had not told me this at the consultation, albeit we had the bad news given to us with regards the transplant. However, the letter stated that they “would definitely consider transplant if his CT chest remains stable or improves”. We were not told this either, but hope it is correct. I am still finding walking up to the village makes me breathless, I have daily physio and coughing sessions and need an hour or two sleep in the afternoons. In the context of the letter from Kings, I certainly do not feel my lungs are getting any better - far from it!

I have a quiet Saturday catching up with correspondence, things on the laptop, etc. We have an invasion on Sunday with Matthew, Charrise and the girls coming for lunch and on into the evening. It is great seeing them, but by 5pm I am feeling very tired and have two hours sleep. Matthew sorts out Tina’s iPod shuffle - their Christmas present to her - setting up her profile on the laptop and loading her iPod with a selection of music. Great stuff.