I wrote this 2 weeks ago, but had some gremlins that wouldn’t let me post it, & then I went back to work… more about that later.
The final part of my treatment was radiation. It was in all a bizarre experience but much easier to manage than chemo, the side effects have been quite marked fatigue and feeling sore, experienced alongside the drudge of going to the hospital daily. My 15 days of radiation stretched out over 4 weeks, due to the bank holidays. Extending time of treatment is never welcome but it was a relief not to have to go in on those days I didn’t. Hospital time is not like real time, the board that says they are running on time is running to someone else’s time, and generally that person is not early for anything, they are late. The waiting room was thought mostly a cheery place, even the moans were cheery, we were all making the best of it. I also saw a lot of people a great deal worse of than me, one of the depressing things about going to a hospital regularly is that they are full of people who are very poorly.
This is the day before I go back to work. Going back to normal isn’t on the cards, the physical and psychological impact of cancer prevents that, and I am still in pain/discomfort most of the time. I am looking forward to it though, the anxiety and depression which were eroding that have taken a back seat, hopefully never to return. There were some very miserable times back there in that land. But the universal experience of humans is to forget pain once it has passed and even the horror that was chemo is back in its box. I can’t remember how I did what I did in my job but hoping that will come back and the work I have done from home whilst in treatment gives me some confidence that it will, as does all the online engagement I’ve had with others involved in my profession. I have a great manager and a plan to manage me back into work, not rushing anything, but hoping it won’t be too long before I can do my actual job. Meanwhile OH is in France for work, and whilst I wasn’t looking forward to being on my own at this time, it does at least mean I can collapse into bed at the end of a working day, with beans on toast if I need to! The fear that has been a constant companion during treatment has retreated into what is probably denial. I am sure it will resurrect itself if any of the symptoms of secondary cancer arise, they can be symptoms of other matters of course, but the wait for the outcomes of scans will never be anything other than anxiety inducing.
I have not been a ‘good’ cancer patient. I have been truculent and difficult at times, although never (hopefully) unreasonable with anyone trying to help me. From the outside breast cancer world is pink ribbon waving and running 5k. From the inside it is a conveyor belt of treatment and world of pain, which various professionals say they will help you manage, but which is unmanageable in my experience. Don’t get me wrong, if it has saved my life, and the cancer doesn’t come back, I will be grateful. I am not ungrateful if it doesn’t. It has also been a world which has refused to discuss the notion of the cancer coming back. I remain deeply disappointed that the conversation with professionals is a narrative framed by ‘don’t think about that’ or ‘think positive’. I don’t want to dwell on the return of the cancer, that way lies death which is never easy to think about, not least when a cancer death doesn’t equal anyone’s idea of a good death. I just would have liked a rational conversation about whether that might happen for me, what that would mean for me, and how it might be managed. I can hear those who tell me to cross that bridge when I come to it, which is fine for those who care about me who don’t want to think about death either, but it wasn’t what I needed to hear from my doctors. As someone who routinely has difficult conversations with people, hopefully managed with kindness and humanity, the avoidance has been perplexing. My treatment has been governed by targets and guidelines, it appears to me that some find their comfort zone in that kind of scaffolding around their profession. I think that is shameful because it negates the experience of the patient. We are supposed to just do what we are told and dialogue which has a less clear cut framework disappears into the ether. Having said that, I know there are some people for whom their medical team have been able to confront their fears with them, and who have not lost sight of their patient. I also suspect that the most down to earth person I have met, who was the professor of oncology, would not avoid my fears or questions. I just only met her once and didn’t ask about that stuff. I might next time I see her, but I saw a different registrar each time.
For now we just have to have hope. Easier said than done as most things are.