Can’t even think of a title for this one
It was only a few days ago that I last updated this blog and I was going to save it until after Monday when I will have a lot more facts to fill people in on, but it feels like such a long time ago that I went into hospital and I have almost come out a different person, such is the terrible blow that’s occurred since then.
I won’t go into detail but there were many, many reasons why this hospital stay was so very different to the last time. I went in thinking ‘well if it was as smooth as last time, I’ve got nothing to worry about, I’ll be laughing’ but that turned out not to be the case. Turns out the most important thing about brain surgery is where they enter your head. Once they’re in, they can pretty much do anything if they can get at it. This time they went in at a funny angle, which meant the whole thing was complete agony when I woke up. Head, neck, cheek, jaw, everything. But I gritted my teeth and on Wednesday, Mr Kitchen came to see me on the ward to say, yes it had been a success, even though the tumour had grown again, but he’d removed it completely. Just as I was about to breathe a sigh of relief and focus on the business of healing my head and getting back on my feet, he comes out with a “however…” and explains that, on the MRI scan they do just before surgery, so they know exactly where they’re drilling, two new tumours were picked up. Again in another new area of the brain. I was so sick and exhausted from the surgery that I just sat and cried while he told me they now want me to have a course of radiotherapy to the whole brain, in the hope of zapping both what they can see at the moment and more importantly, anything that might be lurking that they can’t yet see. There’s basically no point having your head cut open every time they find a tumour and to be honest, having felt so terrible from this latest surgery, I’d really think twice about it again anyway. The terrifying truth, which I cannot get my head round AT ALL, is that no-one knows how much cancer is in my brain, or where it is, or what it’s going to do except keep growing at the rate it has been, ie fast. Every assumption they’ve made so far (“there’s only one, no no, there’s DEFINITELY only two”) has been completely wrong. I’ll be seeing Naomi on Monday to discuss what happens next, it sounds like treatment will happen quite quickly. I’ve done some research on brain radiotherapy, I am led to believe that, often the side-effects aren’t too bad, so I’m clinging onto that. There’s a whole different world between losing breasts and hair that can be replaced artificially and having your brain messed with on a level where you do run the risk of losing a part of who you are, even the tiniest part. I’m scared of becoming forgetful, losing my clarity of thought, my focus becoming duller and harder to pinpoint. I remember Ellie having whole brain radiotherapy and it sorting her brain problems out, and not really effecting her detrimentally, a fact I have had verified by Tom. But there’s another part of me that thinks ‘well I’ve already had major surgery to my head twice in the last seven months, how much more brain fiddling am I capable of?” I’d like to say “LOADS” but the truth is I am completely petrified that this is all getting out of hand now. I can’t believe I woke up from a really tough operation that I thought was a complete success to be told that wasn’t the end of it. It’s just been a massive, massive headf*ck (sorry auntie Lin and & uncle Pete, I know you hate the F word) and everything’s changed. It’s such a lonely place to be as well, I have been surrounded by people over the last few days but I feel like they’re so far away even when they’re right next to me. I don’t know if that sounds weird, it feels weird.
Anyway, no doubt Monday will bring more clarity and again I am grateful to have some of the best people in London on my team – what I didn’t realise is that what Naomi doesn’t know about radiotherapy isn’t worth knowing apparently, one of the doctors described her as a ‘bit of a physics geek.’ Excellent.
There’s probably an element of post-anaesthetic blues too but suffice it to say I feel a bit wobbly at the moment, emotionally and physically. Please remind me to stay calm and get some rest and let’s hope for a big fat plan to be in place by Monday afternoon.