Well, after a truly awful few days I have news to report from my scan. After many phone calls to the hospital my oncologist called me and told me that there was ‘no change’. I asked her if the tumours had reduced in size and she said, ‘No, exactly the same.’ At first I was very relieved that they had not grown, but this soon turned to dismay and then full blown depression that they had not continued to shrink. I am confident in the way I am treating my cancer and truly believed that the tumours would have continued to have got smaller.
Now, in my experience, oncologists sometimes neglect to tell you the whole story so I felt it important that I look at the scan report myself. To this end, I asked to pick up a copy of the report , which we did yesterday. I can only say that what I saw was unbelievable. Basically, it looked like they hadn’t even scanned where the tumours are! Both Andy and myself were very confused and in a daze at this point, so I waited until I got home and telephoned my oncologist. I have literally just got off the phone and I am completely incensed! She informed me that they had not scanned my neck. I said ‘but you told me there had been no change, and as a consequence of this I have been in bed for the last few days and have pulled out of being in a documentary on LDN’. She couldn’t possible say that there had been no change when my neck wasn’t scanned in the first place!
Obviously, she tried to wriggle out of it and fob me off and then said, ‘because you are not having ‘treatment’ we don’t really have to give you scans anyway.’ Basically she was saying that because I am choosing not to have their nasty mustard gas pumped into my body that the hospital has no duty of care. I told her that if this is the case I was going to make an official complaint, at which point she told me that she could organise an ultrasound on my neck which would determine the size of the tumours. I cannot begin to tell you how angry I am at this news. If they can tell what is happening by carrying out a simple and SAFE procedure which will give me the results almost immediately, then why wasn’t this option offered to me in the first place? I think she only offered me this option because she knew I was going to take the matter further.
So, now I have to go through waiting for results again, when I am only just beginning to recover from the last few dark days.
There are so many issues surrounding this whole fiasco, not least, IF I were having chemotherapy they would have continued to scan my neck each time so that they could justify spending hundreds of thousands of pounds on it. As soon as money is no longer involved they don’t particularly care what is going on, and stop scanning the tumours!
Yet another of my bugbears is that Doctors do not listen to what their patients are telling them. I have told her on more than one occasion that I will never have chemotherapy again, and yet she told me ‘I know you said you wouldn’t have anymore chemo, but…’
I did enter into a conversation with her regarding ‘alternative cures’ which she tells me she has never heard of, but she is obviously going to continue to say that chemo is best as that is what is so lucrative for her. There have been so many studies carried out that have found that DOING NOTHING results in cancer patients living four extra years than if they had recieved chemo. These are not ‘quack’ studies, they have been cited in the Lancet, the doctors own professional magazine.
Anyway, I am aware I have rambled quite a bit here, but I am still so angry about the whole thing. I rounded off the conversation with my oncologist by telling her that she works for me, not the other way round, and that I should be respected for my treatment decisions and that there should be complete honesty between the two of us. She did make a half-hearted attempt at an apology, but it was pretty weak to be honest.
I fully respect anyone’s decision as to whether they have chemo or not, but I honestly believe that if you don’t take responsibility for your own health and demand openness and honesty from healthcare ‘professionals’ then it will very much be to your detriment.