Confused and confuddled....

Its a strange feeling.  I wasnt in any pain, apart from my fingers being cold and stiff, and yet my oxygen sats were only 82%.  I knew that was really bad but I wasnt worried for some reason.  Carla, my nurse, obviously was though.  Although remaining calm she was talking at me constantly to make sure I stayed awake with one eye on the monitor.  It didnt take long on 100% oxygen for my sats to come back up to 98% - then I was worried !  Like before when I had gone 'loopy' it was only afterwards I realised the full implications.  When Carla walked into my room and said 'God your BLUE !' I just smiled at her sleepily.

Carla is an extraordinary nurse.  Probably one of the best Ive ever either worked with or been looked after by.  And thank goodness she was looking after me then - recognised the signs - and dealt with them quickly and efficiently.  Reassuring me all the time.

This was my third dose, and although the first 2 had been pretty horrendous, definitely the worst so far.  The decision to continue and have a 4th wasnt easy.  It was only Carla reassuring me that she would keep a close eye on me and it would be fine that finally convinced me.  It wasnt exactly 'fine', but at least I didnt have a repeat of the very low sats, mainly because Carla kept me on oxygen all the time.  But that was enough - I honestly couldnt take any more.  I was totally exhausted, hadnt slept in 3 days due to the side effects which were as bad as ever.

Later that day I was waiting for Martin to come and pick me up - I dont think Ive ever been so happy to see his smiling face ! - when Prof H popped in to see me.  And we had a very worrying and confusing conversation.  I had seen him on the Monday before my treatment started and he seemed happy with the way things were going.  But now he was voicing concern about the skin lesions I had and querying whether I should start Sutent immediately instead of going for surgery.  This really confused me.  I had always been told by everyone that surgery, whenever and wherever possible, was the preferred first line of treatment.  Cut it out.  Get rid of it.

I wasnt really in the best condition to make any decisions right then so I just said I would chat to Dr P about it next week when I see him on Thursday.  But it did come as a bit of a blow.  Prof H is obviously concerned about these skin tumours and wants them under control as soon as possible.  Sutent, apparently, does work very well on them - if it works for you.  I shall have to think about this very carefully.  If I do start taking it then I can forget about any 'full and durable response'.  You take it for the rest of your life.  And it can have some nasty side effects.

I need a break.  I need a rest.  I need to feel WELL for a while - longer than a couple of weeks.  Im back home and feeling dreadful again ofcourse and I know it will be at least another 2 weeks before I feel normal again.  I need to be able to eat properly, and not sleep for half the day and be able to do small things without getting totally exhausted.  And to be able to get out of the house - I feel like a tortoise right now - hibernating during the winter !