The wind outside the house is very strong and the air/sea rescue helicopter has been hovering nearby so there is a vessel floundering somewhere in the Western Approaches to the Solent. Our hearts go out to them because we too have been caught in storms at sea.
I can’t sleep. The day has been a rollercoaster and it all started so well. The oncologist on Wednesday confirmed that the Bendamustine had worked and the lymphoma had dramatically reduced. They don’t normally do a PET scan and I would have been signed off as in partial remission (mantle cell lymphoma never completely disappears). However the PET scan was done for the bone marrow transplant clinic and revealed two tiny areas of activity. My oncologist reckoned this would be dealt with by radiotherapy and if I consulted a BUPA Ear Nose & Throat specialist (health insurance) I would get my nasal problem solved in time to meet my 6th December deadline.
The Bone Marrow Clinic move in less dynamic fashion. Although they were the ones who wanted a specialist to deal with my mucus problem it had been left to me to get a medical appointment. This turned out to be done not by a proper NHS consultant but by some sort of quango assisting the NHS (probably set up to reduce the Government waiting times). This was a great diagnosis but no treatment.
I found it impossible to reach the Bone Marrow Clinic to find out what was going to happen but eventually I found someone today who relayed a message to the consultant. Communication is not a strong point. Having told me that my admission date would be 6th December, and the family having come to terms with my being in hospital over Christmas, this was all changed. My treatment would be determined later this month. What a waste of time! Eventually they confirmed that radiotherapy would be needed but not started until after 24th November and after prompting from me, that they would find a BUPA Ear Nose and Throat Consultant which will, at least, shorten the waiting time. I insisted I would not wait until 17th December for my NHS appointment as I had already had this problem for eleven months. I said that if they didn’t arrange this via BUPA, I would. This seemed to galvanise them into some action.
I am coming to terms with the delay. I realise that it might not be wise to have the transplant too close to having radiotherapy which I know goes on working after it has been administered. I know that I must be in the best possible health ready for the transplant. However, why did they propose 6th December? My oncologist is so different; he would have organised the necessary treatments/appointments the day he saw the scan, but he has had to hand over my treatment to the Bone Marrow Transplant Team. They are nice well-meaning people but not used to moving between the NHS and private care to ensure the best outcomes – and obviously not good communicators.
We will weather the storm. There are worse ones still to come.