For those who are following the progression of the disease, here's the latest news.
The Hospice Nurse came round to assess me last week. We don't have Macmillan nurses in Wiltshire, apparently, because we have the Hospice but it's supported by Macmillan and the nurses are trained to the same standard and do the same job. I was very pleased that Simon has many years of experience - most of his 20 year career - in cancer care, so he knows hat he's talking about. And he allocates an hour for his visits so they're not rushed and I have a 24 hour helpline direct to the Hospice so that's comforting. His main priority on this visit was to address my most urgent requirement, which in this case was pain relief which was becoming ineffective. Apparently tumours are not painful and cancer pain is caused by the tumour pressing on nerves or organs so he suggested some nerve pain tablets which he organised with the doctor and I picked them up from the pharmacy a couple of hours later.
As they set your head spinning you have to start gradually with one a day. The basic amount is one, three times a day. But if it isn't enough you can gradually increase the amount until the pain is under control to a maximum of nine. Then he'd have to refer to a doctor, so I suppose we'd be talking morphine based drugs with I don't know what side effects. Well, at the moment I'm on 6 a day and the pain is much better although not defeated. I'm reluctant to go up to the maximum so soon so I'm putting up with a certain amount of pain for a couple of weeks to see if it settles. Staying awake is a struggle!
As for my breathing, I'll be going to regular 'breathing workshops' where I can learn to control my breathing when there's no room in my lungs. I can't wait - lessons on how to breathe. He's organising me a blue badge for the car too. What have I become?
Tomorrow we're back off to Bath to see the Oncology consultant who will decide whether chemo can be offered with the idea of reducing the tumours to relieve the pain. I don't want it to extend my life but reducing pain sounds like a good idea so we'll see what they say about side effects. I'll let you know the plan after I've heard it tomorrow.
At least the memsahib's going with me. I think I might just hand all my care decisions over to her and Simon as they tend to overrule me anyway when I have any brilliant ideas. I won't be able to argue when I get to that stage anyway!
Ian
