Amidst all of the information of that week, one other thing was brought to my attention.
They’d had to take my eyelids.
I was under the impression that they were going to spare them. I was told that this was the best outcome by far, because reconstructing realistic eyelids isn’t really possible. I looked happily to a future where I would get a prosthetic eye and things would look relatively normal.
But nearly two months after my surgery, I received the information that this wasn’t the case. Yes, I would have preferred to know this at the time. I don’t think anyone likes being drip fed important information. But it is what it is. I had been wondering if they were gone, since my eye appeared to be properly sealed, not just held shut. But I wasn’t going to guess.
In a week of thinking my days were potentially numbered and trying to collect information on treatment options, this was hardly the most important thing. But it was still a sad thing to hear.
The issue with the open biopsy – you remember, when they cut in through my eyelid and took a sample of what we now know was cancer – is that what goes in must come out. And the tools that cut down to the tumour inevitably spread some of those cells to the surrounding tissue as the sample was extracted. Other than that, it looked like the tumour was localised to the bone (as far as they can tell), but it meant that my eyelid was affected. And leaving it was a risk too big to take.
Deepti said she was angry that my eyelids had been taken (which reinstated my understanding that this is not good in terms of reconstruction) but that that she knew it had to happen.
A sentiment I echoed.
I was (am) so scared that this wouldn’t be the end, that the cancer would keep coming back…
This was a sacrifice I had to be willing to make. Another one.
I don’t have any further information about what it will mean going forward, I had enough information that week, just knowing the reality was enough. In time I will understand the implications, and what is the best I can hope for.
I’m guessing it means that a prosthetic eye isn’t on the cards anymore. I know someone who has lost her eye and eyelids to cancer, and they’ve given her a plastic eye-type thing that she has to glue in if she wants to wear it. It doesn’t blink or look like an eye for more than at a glance. I don’t want that.
Anyway, I think ‘what happened to your eye’ is a better question to be asked than ‘what’s wrong with your eye’. The first puts me in control, the second takes it away. People can probably understand ‘oh there’s no eye there’ better than ‘why does her eye look weird’. As can I.
So here we are: no eye, no eyelids, a sinking brow, a disappeared top lip (time to throw out my lipstick stash I think), no cheekbone (or top right jaw&teeth obvs), a crooked nose, but hopefully cancer free…
I have a funny feeling reconstruction may even be a step backwards looks-wise in some ways, but I suppose we shall just have to wait and see.