Another Quiet Week - I Get my Chest Consultant Appointment

Monday 28th January to Sunday 3rd February 2008

I take Pauline to see Colin Dunbar in hospital at the PRH. Poor Colin has been in for over two weeks and we only heard on Friday. I think he enjoyed the visit and gets out soon. I am down to Brighton again on Tuesday for a blood test, which shows that my counts are holding up well - Wbc: 5.3; Neuts: 3.5; Lymph 1.1; Hbn: 11.8; PLT: 118. So I hold back on the GCSF until my Friday blood test. I get my chest consultant appointment by letter today for two week’s time. This is good as I really want to know as soon as possible whether there is any - even forlorn - hope of the possibility of my lungs being up to the bone marrow transplant at any time in the future. Alternatively I want to know what I can do to make life at least reasonably bearable given the current state of my lungs. I even want to check out what chance I could get back to work on a two / three day per week basis, or if travelling to London is not a runner. I need to get a fresh sickness note from my GP. In the absence of Richard Cook, a colleague gives me one for three months. This makes sense as I am in the throes of being less CLL and more Bronchiectasis plus there is the possibility that I might be able to get back to work around April time.

Tina is off on Wednesday. We have a visit from Jane and Richard and we have lunch at the New Inn with them. I really enjoy my lamb - plus two pints of Harveys! I am definitely back on track with my taste buds and appetite. Incidentally I am having a can of Old Speckled Hen each evening, except when I have already had a midday beer. I am hoping this will help with my efforts to put on a bit more weight and supplement my fried breakfasts and porridge. I am sure it all helps. We have decided that we will go on the pilgrimage to Lourdes that is being organised jointly for later this year by our parish priest and the priest from the East Worthing parish - where Matthew lives.

On Friday I go down to the RSCH for a three hour session with Vigam - my monthly immunoglobulin infusion. My blood test results today are - Neuts: 2.2; Hbn: 12.5; PLT: 123; and I have a CRP reading of 23 - the first CRP reading for ages. I am not surprised as I have had quite a bit of catarrh in the head since yesterday. I will see how things go. Despite all my diligent eating and drinking my weight today is 73.2 kgs. This is a kilo less than when I came back from our week on La Gomera. My GCSF injection today is the first since last Friday. So it looks as though this is dropping back to being a weekly necessity, rather than every three or four days.

I have a survey and estimate for loft and cavity wall insulation from the company linked to the offer from our District Council. It is a good deal but there will be the additional expence of having our loft floor raised if we want to continue using it - which we do. Add to that the electric rewiring we need and we will be making some considerable investments into our home during the first half of this year. But we will be safer, warmer and saving energy bills in the long run. A few months after stopping work last January, I applied for Incapacity Benefit, having been advised by the Job Centre Plus contacts that I would qualify. Well I soon found out that I didn’t, although I was no longer required to pay the £9 or so monthly stamp with the Department of Work and Pensions covering this for me. I recently received a 20 page detailed questionnaire about my “Incapacity”. Not really wanting to fill it in, I spoke to a helpful person at the regional office, with the result that I am going to ignore it at least for the time being.

We have the weekend away at Pam and Tony’s in Thanet and as ever thoroughly enjoy ourselves. We get there about 4pm, have lots of chats, enjoy a few drinks and have a superb confit of duck - homemade by Tony. He is such a good cook. Tina goes to the Minster “Minster” on Sunday morning but finds there is no Mass and a quick visit to Minnis Bay is very cold and windy. We go to the Dove at Dargate for an excellent lunch and bid our farewells there, having talked about getting away for a few days in the May half term week to Honfleur. At the risk of repeating myself too many times, my week still features my daily or twice daily lung clearing physio, plus an hour or so sleep.