Last November when I was going through treatment for my primary breast cancer I blogged (here: https://wordpress.com/post/71284107/73/) about the top ten words or phrases that, as a breast cancer patient, I feared or loathed the most and wanted removed from the dictionary. In the last few weeks and months since my secondary diagnosis, I've revisited these. Many have changed, some remain. Here is my current list:
1. Prognosis. Once you've been told you have secondary breast cancer, you know what the ultimate prognosis is. There's no getting away from it. The bastard disease will almost certainly get you in the end. Once you know this, it's a matter of when, not if. And frankly, who wants to know that? The worst case prognosis for someone in my position is 6-9 months. The best case is unknown. You can't live the rest of your life - however long that may be - fretting whether the end is coming this month, or next.
2. Scan. I've blogged before about scanxiety. I think the best way to deal with it might just be to remove the word "scan" from the dictionary. In my favourite TV show, The West Wing (also the subject of earlier posts), the President's team develop a superstition about using the word "recession", so they replace it in their conversations with "bagel". So I vote we do the same with the word "scan" - let's replace it with something anodyne. Why not "pencil"? Or "cardigan"? "I'm going for a cardigan today". It has a ring to it.
3. Results. Worse than a "cardigan" is what comes after. The "cardigan" doesn't actually change anything. But the results do. They change your mental state. They may change your course of treatment. They may change the prognosis. No one likes results day.
4. Progression. The worst sort of results. We secondaries girls are happy to be Stable Mabel. We are ecstatic if our mets have shrunk. What we dread is progression - the news that the mets have grown, or developed elsewhere. The news of progression of this awful disease takes your breath away. The very fragile state of mind that you have managed to maintain - just about - is shattered in an instant. The horrific reality of your own mortality leaps up and thwacks you between the eyes yet again.
5. Brain. I think it's fair to say that brain mets are the mets that are the most feared. Not that anyone wants mets anywhere in their body. But the brain is the place that we hope will remain unaffected for as long as possible. For some of my sisters in arms, the brain is the first or only place the little cancer seedlings grow. For others, brain mets are a sign of progression. Treatments are possible but grim - whole brain radiotherapy, cyber knife and the like. Driving is no longer allowed, so independence is drastically reduced. For me, the possibility of brain mets is one of the scariest of all possible outcomes. This disease has taken my boobs, my hair, my energy. Please not my brain as well.
6. Hospice. Even writing the word makes me feel cold. As much as people can tell me that a hospice is a place where you can go for support, pain management and other positive help, to me a hospice is simply a place you go to die. Yes, people go for short periods and come out again. Yes, you can go just for the day. But the underlying rationale is to care for the dying. I don't want to go near one.
7. Palliative care. In some people's language, the treatment I'm getting now is nothing more than palliative care. My cancer can't be cured, but I can be cared for while I try hard to put off the inevitable. I reject that wholeheartedly, no matter what anyone might say. Palliative care to me is about caring for the dying. I am not dying - I am living. And fighting bloody hard to stay that way.
8. Angel wings. The awful euphemism used when someone dies - "X has got her angel wings". It is meant to be soothing, to be uplifting, to make it seem less bad. But it doesn't. I'm as guilty as the rest of them for using these words, and I'm so sorry for doing so. There's nothing soft and fluffy about dying from cancer. There's nothing hopeful to be found in it. It's dreadful and black and sad.
9. Normal. There's no such thing any more.
10. Brave, inspirational, amazing. Last time I blogged on this subject these words were on my hit list - and they remain on the list. I am none of these things. I'm terrified, not brave. I don't want to inspire anyone to live through this - I wouldn't want anyone to have to. I am just dealing with the shitty hand that I have been dealt in the only way I know how.