A trip into London..

.and we are already on the move. I have got to enjoy my lie in nowadays, I expect the Amitriptyline has something to do about that. So it wasn’t easy to get up and in the bath by 6 and out of the house by 7am. There was a time, not that long ago, when I would have had no problem being into work by this time. I enjoyed the half an hour or so peace and quiet before the other early birds joined me. Those days, although only about six months ago, seem far in the distance now but we have a plan.

Yesterday my lovely pain nurse Louise (I hate calling her that, but palliative care nurse doesn’t sound much better)came to visit. If you need anything to get going, Louise is your girl. She arranged an appointment for me to see my Psychologist, Daria tomorrow and to meet up with one of the hospice doctors to learn a little bit more about Ketamine. I know I wasn’t too keen in 1) going into the hospice and 2) taking Ketamine but I really have had enough of the endless pain ruining my quality of life.

Today I will discuss the above with my consultant and ask for a referral to a neurologist who may be able to help me better understand nerve pain. I will also be speaking to him and my transplant nurse about the time for my harvesting. I must admit, I yet again think the NHS is doing me proud. I have a team of specialists who I feel are working with me on finding the best options for killing the cancer and curing the pain. It is such a shame that the Velcade caused me to have such an extreme side effect otherwise I would be a different person right now. I suppose at least I have increased my knowledge and understanding of pain and experienced first hand how disabling it can be. It is now beginning to obsess me and the greatest excitement in my day, is the thought of when I can have my next round of medication!

I have been invited out by my colleagues at the end of June which is pretty exciting but I will have to see how I am both physically and psychologically. I am sure they don’t want a blithering wreck spoiling things.

I am trying to do things for myself as I hate relying on all those generous people around me, but it isn’t easy. I just need to accept that and that I am not superhuman but I’d settle for just feeling human nowadays.

Deborah x

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