Hi everyone.
I decided a short while ago that I was going to write a book about the experience I had as a relative of somebody with terminal cancer. I feel this could be helpful for carers who are still on that journey. I feel that particularly because I have been reading comments in a forum for carers here in Ireland.
Anyhow, in the introduction of that book I would like to tell my husband's story briefly from diagnosis to the beginning of the Chemotherapy treatment. While I was writing it down, I suddenly realised that there are things from that journey I don't understand. That has to do with gaps in treatment.
So, for example, my husband's PSA started to rise slowly in 2013 and it climbed from 6 to 150 over the course of nine months without any intervention from doctors. Isn't that strange? My husband and I weren't together back then - well, he wasn't my husband back then even - but I think if we had been together I would have gone with him to checkups and questioned that very strongly. The only possible explanation I have for this is that perhaps Chemo was suggested to my husband, he said no and then there was nothing else available that they could do until, finally, Zytiga came along in 2014. I can't ask my husband anymore of course. I can only hope that this is the explanation.
The second thing that strikes me is the delay of scanning in 2016/2017. I think I told you this before. So on Zytiga his PSA was below 1 for two years and then started climing again, first to 3, then to 4, then to 5, then to 7, then to 10, then to 11 and back to 7. I said to the consultant that I would love to get a scan done because it would tell us whether cancer was growing or not and where. He said that as long as Paul didn't have any symptoms and wasn't losing weight a scan wouldn't be necessary. That was in April of last year. And then, in May, when the PSA had jumped first to 27 and then to 89, they decided to do a scan, but the scan wasn't done until the end of June and the results weren't discussed with us until 11 July. Too much, far too much delay if you ask me. By then the cancer had had months to spread into and through the liver.
Also, the change from Docetaxol to Carboplatin took a while. They did a scan after two rounds of Docetaxol, discussed the results with us the following week, and gave the first infusion two weeks later. So, again, more delay and more time for the cancer to grow.
Also, on that subject, I am asking myself: Why didn' they put him on Carboplatin straight away when they knew that they were dealing with liver mets here?
I don't really want to go back to the hospital and request Paul's file. One reason for this is that I am trying to get work in that hospital at the moment and I think when I arrive five months after my husband's passing with such a request they will only think that I can't let it go or something like that and might feel that therefore I am not fit for the job there. But also I don't want to do it because I feel that I should really let it go because nothing I do or find would bring my beloved back to me. And yet, it's nagging me this question of "Why?", particularly where 2013/2014 is concerned. Why would you let the PSA climb to 150 before you suggest to take action? As I say, my only explanation is that it was because Paul didn't want Chemo and that there was nothing more they could do.
What do you all think?
Mel.
Further treatment - Update
Treatment study
