Mary is my MacMillan clinical nurse specialist in palliative care. Thats quite a mouthful isnt it? Basically it means she is my named nurse and first point of contact as far as treatment problems or concerns, especially in relation to pain relief. But she is also there for the family, to provide support and answer any questions they have. Which is nice to know because Im sure Martin has a lot of questions he doesnt want to ask me, but would be willing to discuss with her.
The first thing she said was that considering all I have been through in the past 16 months I look incredibly well - which is true - and has been commented on by many people. Apart from when I was going through IL2, when I looked truly dreadful, I do look well. Healthy even. And as Im always so upbeat, happy and positive it can be difficult to appreciate I have a terminal illness.
But looking good or not the fact remains I do have a terminal illness and one of the reasons Mary came to see me was to discuss our local hospice - St Marys. I know its a wonderful place and they do fantastic work there but I really dont feel it is for me - and I told her. She was lovely and didnt try to push the idea to me, but simply asked me to keep all options open at this point, and maybe go for a visit to the hospice and see what its like. Which is very sensible advice I decided. Its not very realistic making decisions now, whilst Im well and not in very much pain, but things change and I have to accept that. Maybe one day I will not only need, but want the hospice.
Im almost at the end of my break from Sutent, which is a shame because Im enjoying being able to eat or drink anything without a sore mouth or feeling queasy. I see Dr P tomorrow for a check up and to get my next prescription. The lumps under my arm seem to swell up and then go down on and off for no apparent reason. When swollen, like this morning, they can be very sore and tender. It will be interesting to see what his opinion is of this.
The hairs on my arms and legs have at last started to grow back - but they are fair, very fair actually - Im turning into a platinum blonde ! Change of hair colour is a known side effect of Sutent so Ive got my fingers crossed it affects the hair on my head too - for once in my life I will be a completely natural blonde and not and 'enhanced' one !