Hi, I'm new to the forum and I'm not really sure what I'm expecting from reaching out today but I'm hoping it might, at least, do me some good to get my thoughts down in writing. My husband, Andrew, was diagnosed with Stage 4 PC in January. After some initial issues whereby he was told it was operable but they very quickly changed their minds, he embarked on Chemo. It went well to start with but things began to unravel in the summer with constant changes in his schedules, cancellations etc, etc. On more than on occasion we received two letters in one day changing his appointments. Andrew began to have anxiety attacks.For various reasons he went for several weeks without treatment eventually developing jaundice due to a blocked bile duct. We had to fight every step of the way to get him treated resulting in three and a half weeks of hell in hospital. I truly believed I was going to lose him.
He is now home and, thanks to a short course of steroids, has regained some weight and strength. The problem is this - On the 16th September we saw an Oncologiy Registrar and were told he definitely couldn't have any more Chemo. My husband asked the "big question" and we were told 1 - 3 months. We went home and told family and friends. We spent a while getting our heads round it and began getting things in order mentally, emotionally and practically. A further CT Scan had been arranged to see if there was anything that could be done to make things more comfortable.
On 7th October we returned for the scan results. The Oncologist didn't have the results(!) He talked about Andrew's health in general terms then asked him if he'd like to have more Chemo!!!!!! We were completely blindsided. I asked how he could be offering that after our previous conversation with his colleague and was told Chemo was only out of the question all the time Andrew was jaundiced. I pointed out that was absolutely not what we were told and that it was confusing and distressing to be told different things by different people but the Oncologist didn't seem to understand our shock or feelings. After some further discussion it became clear that more Chemo with a different drug, with the potential for worse side effects, might give Andrew a couple of extra months. I could see he was becoming very agitated so suggested we go away to think things through. Almost as an afterthought we were told to get blood tests done in case he still wasn't well enough for further Chemo!!! We came away from that appointment unable even to speak.
After a few days Andrew had pretty much decided not to have any more treatment. The problem is, we feel lost and confused. We don't know what to do. Has anyone else experienced anything similar? How did you or your loved one cope or move forward? Did you move forward or did you "freeze" as we seem to have done? Any help, advice or just thoughts would be appreciated.
Sorry for the long, rambling post.
