The Ceiling is Falling in – More Treatment ASAP

Monday 11th to Monday 25th August 2008

It’s Bank Holiday Monday (25 August) and I am again having to play “catch up” on the happenings of the last two weeks. We celebrate Eva’s 2nd birthday with Anna and Nick over the weekend of 9/10th and also on Sunday, Jim and Cath Rodgers’ 40th anniversary. That day I also speak to my old friend John Mason on the phone about my blog. He has had a career in chiropody, podiatry and surgery. He talks me through how to deal with the nasty blister on the top of my toe. It’s all to do with my condition, my treatment and exposure to the sun. Tina and I then carry out John’s instructions and I am left with a fully dressed toe and an empty blister. He tells me not to touch it for five days and it should be all ok. Five days later we take off the dressings to find the blister half filled again. We drain and dress it once more, leave it for more than five days this time and find everything progressing well. I guess it took longer for me with my dodgy immune system. Two weeks later and the blister has completely gone with new skin in its place. Many thanks John!

I go to the office in London on Monday, work at home Tuesday and Tina and I have a day off together on Wednesday. We go to Lewes and buy a rather nice watch for her – my very belated 60th birthday present and 13 months overdue! On Thursday I am down to the RSCH in Brighton for my three hours of Vigam infusion. It turns out to be four and a half hours and I get a parking ticket. I am appealing and will get a letter of support from the Day Unit if needed. My weight today is 77.4 kgs and my bloods are quite good, although my lymphocyte count is 3.9 – an upward trend. I have managed to get out of having a second bone marrow biopsy. Taku thought there was an insufficient sample, but in the end it was enough.

I have a day working in London on Friday and we go to Tony and Pam’s in Sarre for the weekend. It is good fun, they are such great company and we have a very enjoyable time. The only drawback from being in company, either home or away, is always my health routines, physio, GCSF injections, etc. They can be quite intrusive and at times very anti-social. Still needs must!

I have a day at the office on Monday and put in a call to Tim Corbett to hear that the application for Revlimid has been turned down by the PIN Panel (Patients with Individual Needs) on the grounds that there is insfficient evidence of its efficacy in relation to CLL. Tim will appeal on my behalf, research more data to put to the panel and suggests I write to my MP – this is a fairly hot political issue at the moment, especially after the recent report on the decision making of these panels by the Rarer Cancers Forum. Tina and I are nonetheless at a low ebb that evening. I also hear that my bone marrow is 90% CLL cells – not surprising considering all the other symptoms I have.

On Tuesday I see Tim Godwin at the Yard for a chat. He is great and is very concerned to hear that things are starting to go downhill for me. Most of all he is very encouraging. He had another appointment immediately after seeing me and to my surprise and delight it was Dave Colella, together with his wife, saying goodbye to Tim on his retirement. Dave was my town centre beat officer in my Crawley days, with Tim as our superintendent. Dave had transferred to the Met some years back and has now done his time. Dave, of course, was amazed to see me and it was a rather nice reunion. I left the Yard en route to Tottenham in Tim’s staff car, courtesy of Tim’s staff officer, Sally. It was rather nice being chauffeured in a smart car, but I ended up at the wrong Tottenham nick and had to get another lift to the right one(!)

I worked at home on Wednesday and on Thursday morning Tina and I went down to the RSCH for my clinic. We saw Taku Sogay, with Tim Corbett coming in half way through for a chat. My weight is 77.5 kgs and my blood results are: Wbc: 7.1; Neuts: 1.5; Lymph: 4.2; Hbn: 9.6; PLT: 50. Tim has dictated the appeal letter so we will have it heard at the next PIN Panel meeting on 5 September. We discuss possible options should the appeal be unsuccessful, including the steroid Dexamethasone in combination with something else. I mention the very painful leg cramps I have been getting at night, albeit not every night thank goodness! I am prescribed a supply of quinine sulphate and get another three weeks supply of GCSF. I have also started to get night sweats – just my head – and not every night as yet.

We are up quite early for my 10.15am appointment at Kings, which we have with a new consultant, Robin Ireland. He is joined by Steve Devereux for a discussion on my treatment plan during the consultation. Various options were discussed including the dreaded CamPred. However, it is decided that I should start on Dexamethasone as soon as possible to “debulk” the CLL in my bone marrow. If the PCT approves the prescribing of Revlimid, I will have that to run alongside it. If not, then I will have Thalidomide instead, which does not need PCT approval. Each of these treatments is in tablet form and none is expected to have any invasive side effects, so I will be able to carry on working as normal – which is good! Robin will fax a letter to Tim Corbett today and I am to contact him next week for an early appointment. I am due back to Kings in two months. As we are leaving, Viki Bevan, the clinical nurse specialist, knowing the recent changes in my condition, makes a point of seeing us and we have a good chat. She is always so supportive. Isn’t that great and so very thoughtful. She asks me to let her know the result of the PCT appeal. Today for the first time we noticed that the Haematology Unit has a Mission Statement displayed in the waiting room. I can’t now remember what it said, but it was a good one and we both agreed they all live up to it. I call Anna and Matthew with our news in the evening.

At the weekend I type an email letter to my MP, Nick Herbert, asking for his help with the PCT appeal. Although it is the holiday month of August, his website states that his office will be staffed. I cite the Rarer Cancers Forum report on “Exceptional Case” applications to PCTs as well as detailing my situation. PCT cancer drug decisions have become a political hot potato recently, so here’s hoping. Tina takes Anna, Nick and Eva to Heathrow on Sunday morning as they have a photographic assignment in Los Angeles for the next four weeks or so. We then go to Jane and Richard’s in Shorne for lunch and I meet up with an old school friend, Michael Baulk. It is amazing as we have not seen each other in 47 years! We are both A level – failed former Grammar School pupils, but he was always the bright fellow with lots of flair and way ahead of the rest of us in the latest ideas, TV jingles and so on – and he is just the same as he was back then in so many ways. It was an absolute delight and we hope to keep in touch. We then zoom back to Worthing to babysit for Matthew and Charrise as it is their 6th wedding anniversary and they are dining out. They have a super meal.

Monday is a recovery day for me as I have so much gunge in my lungs which wants to get out, despite my physio. I was coughing a lot yesterday and seem to strained something in the area of my diaphragm. Instead of going to the Worthing Carnival, where Charrise was doing a singing spot in the afternoon, I decided that more physio and an hour or so rest was needed. So, Charrise, sorry we could not be there to support you, but the physio was essential and the rest did me a deal of good, because my coughing eased considerably, as did the discomfort in my diaphragm. Good thing it is Bank Holiday Monday. I would not have relished a day’s work in London given the way I felt.