A couple of times on this long and bumpy road I’ve encountered severe loneliness. This has coincided with times the general mood has conflicted with my own. For example there was an assumption that “It must be lovely for you to be home from hospital!” Well actually, it was difficult. I was brutally exposed to my limitations. I couldn’t hold my son. I had to surrender to help (that I know I’m lucky to have) and recognise that life was going to be different now.
A week later and I am physically healing well, sleeping fine and am able to make a number of small contributions to the household. I am adapting to the new normal.
Still, yesterday this onslaught of loneliness happened again when I got the “all clear, but.” While there were whoops of joy around me for the all clear, my mind kept snagging on the ‘but’. I loathe how this disease has given my optimism, which I have worked so hard for, a roughing up. Plus if flashes of irritation were to appear from those around me that I can’t get with the celebratory program, that would be understandable. I wish I could, I really do. However, I don’t feel as if I’m out of the woods.
I was looking for the all clear, then I got the all clear, and heaven knows….
In brief the ‘but’ is that while all the cancer was removed from my body, the ‘margins’ namely the gaps between the edges of the breast tissue that got taken from me during my mastectomy and subsequently pathologised, and the cancer were less than 0.1mm, in fact in one measurement it was 0.02mm. This implies that while all the tissue it is possible to take in a mastectomy was taken, there may be remnants in my body that could grow again in years to come. It would not be breast cancer then, but may appear on the chest wall for instance and my (albeit layman’s) understanding is prognostically, this type means you’re pretty much d-e-a-d. The cancer recurrence rate post mastectomy is meant to be 0.03% but for those, like me, with low margins, it’s more like 5%.
This is still pretty low, I realise, but if it could be reduced further by a course of radiotherapy, for instance, that is something I would consider (although there would be implications for my breast reconstruction should that occur.) Say having a mastectomy means I’ve paid a ‘price’ of $1,000,000, I don’t want to get cancer again because I should have paid $1,001,000.
Anyway I’ll be taking advice and will not take any drastic action, it’s just… it’s not over yet.
Another reason the saga continues is I’ve decided to see a psychologist to help me get my head around the epicness of the last six weeks. I think I’m ready now. After all when you have appointments to go to, an operation to prepare for and a big logistical banquet to organise you can keep your mind focused on that. Now that’s finished. It’s the beginning of the end (or at least the end of the beginning). Time for the genuine processing to start.
Plus I’d be lying if a tiny part of me didn’t want to see a shrink because I think it’d make for entertaining blogging fodder.
In my head (or the movie script) I’d drafted a ‘thank you’ post acknowledging everyone who has helped me along the way. And another ‘silver linings’ style post. These may still come but not for a while.
Essentially I had hoped to be able to wrap up the little c and carry on blogging in a spin off which focused on the reconstruction effort but I can’t, not yet. Not when the unwanted guest has demanded more airtime.
So here we are.