Writing this down for my own sanity, hoping that if I see things in black and white, I might order my thoughts and know how to progress! Not sure if I should contact my dad's cancer specialist direct to ask the questions that i would like answered (and feel remain unanswered after dad's visit to him). It's all such a waiting game and I feel frustrated just to be an onlooker and not be able to help in any way. Also, don't feel as though I should take over but feel I need as much information as possible. Don't want to do things behind his back but yet don't want to express why I feel so worried and I feel I need to push for ideas cos just want to make him better.
Dad now on his second week of his first cycle of Sutent. Tells me that stomach feels a little upset but generally not too bad (or he's not admitting to anything else!).
My questions for doc as follows (but if anyone has any others they would be welcomed!):-
-Doc recommended sutent but didn't wait for results of biopsy (which is what he was told he needed before any medication given) but that took about 6 weeks - so why the delay and why has he been started on sutent without biopsy results? What more will biopsy tell us (since they've said it's grade 4).
Why can't he have cryosurgery, radiofrequency ablation, gene therapy or radiotherapy? Are they waiting for results of sutent?
When will first scan happen to see if reduction in tumours?
As he's losing dexterity in arm/hand, why won't physio help? Presumably because of brain tumour but would physio do anything - even to keep circulation? Would like doctor to know that rapid deterioration this week in his mobility/dexterity/balance/face muscles. Surely doc should re-assess? (not due to go back to doc for another 5 weeks).
Mainly writing this as diary to keep track of thoughts and ideas/questions.
Kind and positive thoughts to all who are reading.
