A few months ago, I was invited to become a MacMillan Community Champion. It’s a voluntary role and it involves doing what I do anyway - trying to provide some support to people going through cancer diagnosis and treatment. I mostly reply to posts from people with triple negative and/or secondary breast cancer, but also increasingly to others as I have gained more confidence. A lot of what I do is repeating some of my own experience, but generally focusing on the more positive side of it. As a (so far) survivor who had a complex and difficult treatment and recovery path, I do wonder whether I have pushed some of the darkest bits under the covers. Doing so is a natural thing to do and probably an essential part of recovery. I also don’t talk about it much now, other than to my husband when I have had a couple of glasses of wine.
I have occasionally looked back at some of my earlier blog posts, but had never read the blog back from start to finish. I decided to do that yesterday and was quite surprised by how long some of the things took to resolve and how horrible some of it was. If you had asked me before I read it what had been the most difficult, I would have said the immediate aftermath of my immunotherapy related adverse event, when I wasn’t sure if I would survive and was dosed up on very high dose steroids that left me wired and sleepless. Yet my blogs show I was lucid, fully aware and fully accepting of what had happened. What is then revealed is that I then endured 9 months of steroids and many more months following that of recovery from the steroids where I truly felt awful, but expected to survive and became increasingly aware the cancer was no longer a pressing issue. That’s the phase my memory has minimised. With most of the lengthy list of side effects either resolved or under control, I am never going to be physically in the place I was before cancer started, but I have achieved a good recovery. Kidneys have resolved. Thyroid function is medically resolved. Lungs are improved but stable. Gout has gone. Arthritis has improved. Gut problems have gone. Neuropathy is present but stable. The fibrosis from radiotherapy and the burn damage from the exploding ablation probe is stable. I will likely need blood pressure tablets and statins for the rest of my life and I need to watch that my pre-diabetes doesn’t progress. I could usefully lose weight but still struggle with exercising at any pace.
So what have I learned? It really was a lot tougher than I now remember and perspective is a great thing. And it is the right thing to do to emphasise the positives (without overstating it) when responding to someone else, because when times are tough you need some hope.
