I’m am so happy to be here.
Yesterday and today I had my last 2 radiotherapy sessions and also met a doctor yesterday and a nurse today. It felt more like a good gesture than anything else as they didn’t really tell me anything new or that I didn’t know.
I tried to use the opportunity to tell the Doctor that the information available to patients falls short of allowing patients to make a decision about their treatment, but it fell on deaf ears. She kept saying that “everyone’s individual, that’s why they say it’s your choice.” I kept trying to drive home that the information given to patients isn’t put in a context which allows an individual to make an informed choice.” For example, a 10 year survival rate isn’t very interesting if it is not coupled with information about recurrence.
I wonder if there is even any information why, let’s say in my case of my prognosis, 12% of women have a distant recurrence. It seems likely that if they knew that, we might have a cure for cancer.
I think I will now contact an organization like Breast Cancer Care or the Patient Liaison Service and attempt to make the point. I find the watered down information they give to patients a bit insulting. I did find a very good website – The Early Breast Cancer Trialist’s Collaborative Group – which lays out the information in a very clear way. I wish I had found this site on Day 1.
Oh well. They said that the symptoms will now get a worse for 2 weeks before they get better, so I should plan on taking it easy for a month.
Although this isn’t quite the end of the road – there are follow-up appointments, screenings and of course Tamoxifen for the next 10 years, but nevertheless, I shall declare this the end of the cancer portion of my life. I’m hoping not to see the inside of the Royal Marsden again and less and less of the Sir William Rous Unit in Kingston. From the beginning it all felt odd because I felt cancer was not part of my “story”. I still don’t feel like I’ve had cancer, but something more of a nuisance in my life. I could see people there at the hospital who were getting the scary version. I think I had the “liteversion.”
I suppose this isn’t necessarily over. Many people start with the “lite version” and end up with a scary sequel, but it doesn’t help to think about it.
I’m going to keep a little record of how I get on with Tamoxifen, but I otherwise declare myself done with the cancer part of my life!