bad bad blogger.... not keeping everyone updated...
Anyways, here's the scoop:
My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.
I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.
When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?
The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.
I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.