Today marks the end of cycle 1 of Sal's chemotherapy. To say she had a bit of a rough ride is an understatement! I must say that it hasn't been easy for me either although clearly my experience cannot be compared in any way to hers. However, this blog is specifically from my perspective so it is worth mentioning. I have found that over the past 3 weeks I have become a kind of guardian of Sal's treatment. It is important to both of us that her treatment decisions are made by her but she has found that at times during the past 3 weeks she has not been able to think as clearly as she would if she were well and so she has asked me to oversee everything that happens to her. I am very happy to comply with that request. It means that I have a good reason to be involved and when she is fully able to take it all in I can then bring her up to date with what has happened and what is due to happen.
At times I have been aware of appearing to be a "fussing partner" when I have been insisting on explanations but I try to do it in a way that keeps the medics and nursing staff on our side. It isn't always easy but I believe that now is not the time to be timid - if I have questions then I want answers.
Today, Sal is feeling very well indeed which is quite amazing considering what she went through with her spell of being neutropenic septic only a week ago.
So cycle 2 has started today with her starting the dexamethasone steroids and going to the hospital for her pre-chemo blood test. Even that didn't go to plan. Sal was SO looking forward to not having any more needles now that she has a Hickman line. However, when the nurse tried to get blood from her line she could not. She tried a few times without success eventually flushing some saline through to see if that would clear it but no luck. So there she was, having gone through having the Hickman line fitted only to have to have another needle stuck in her the very first time it is used! We were both very upset. The nurse reassured us that it might unblock itself for next time but I am dubious. My feeling is that Sal will have to continue giving blood for her tests via needles. What a pity.
We have also found out that there is no one outside the hospital locally that is able to flush Sal's line! No one. We were told our surgery nurse could - she can't. She said the district nurse could - she can't, and in any case, if Sal is not house-bound then she wouldn't visit anyway. Believe it or not, our only way to get the line flushed is to visit the hospital. We are gob smacked not to mention annoyed.
Finally, at the end of cycle 1, I want to thank you for your interest and for reading my blog. I am using it as the primary way to keep my friends and family informed on Sal's progress but from the many comments and messages of good wishes many more than that are reading it. Please continue to comment. All comments are welcome regardless of whether you agree with me or not and if there is anything that you would like expanded upon please just ask.
It all starts again tomorrow! 1 down, 5 to go... Phew!
