I’m sorry, this update is late again, best crack on.. . Dee and I headed up to Liverpool a couple of weeks ago for a scan. It was a long day, I found out something interesting about the music in the MRI scanner which was nice and we stayed in the most bizarre of hotels, on the face of it, a disaster but really it was very memorable and we had a fab time (will come back to this later perhaps).
The scan results were not good, but not a total disaster. I’m pretty fed up, but this isn’t the awful “beginning of the end” klaxon. The outcome is that I’m scheduled to head back to Liverpool on the 14th of October for another craniotomy. I’m not looking forward to it, but I’ll cope. Same cheery risks as last time, same consent form signed away already… Stroke, Death, Incomplete resection (listed as a risk, guaranteed in practice), regrowth, visual loss, bleeding…. I think the only risk that has significant likelihood is visual loss. I don’t think anyone’s expecting total loss though, just a little bit of the periphery fingers crossed.
Now that was the important news item over, I have to decide how much more to write “do some writing and have a big cry” has been on my to do list since we got back from Liverpool on September 12th. The do some writing part is important as I feel like I want to share news with lots of lovely people who I know care. The “have a big cry” part is knocking on the door but I’m actively suppressing it, I haven’t got the time or the energy, I keep delaying but I need to send an update!
Usually the writing makes me have a big cry, I think it’s probably therapeutic, I think seeing the words appear on the screen in black and white makes the situation very real, very present and somehow un-erasable. Although I haven’t had terrible news I can look at the life expectancy curve with new information. Essentially, the lucky ones, the people who are “long term survivors” don’t tend to have second craniotomies this soon after diagnosis, it’s now pretty unrealistic of me to imagine that I’m going to be in that group. I can try and there still is an outlying possibility but that little slice of the curve is now much more likely to belong to someone else. I’m now looking like I might be lucky if I make average. I don’t know any of this to be sure but I’m quite likely to be right. Average is pretty shit for this disease.
I spoke with my therapist after the last scan. I don’t go regularly, I haven’t felt the need but a couple of times a year seems healthy. We discussed fear of death, accepting death, meaning of death and she recommended to read a book about death. Obviously we’re all going to die and I can accept that but somehow “accepting that I’m dying” is too big a step, I’m not ready for that yet. I feel so well and so healthy and I’m not really dying, not yet. We batted around the death stuff for quite a while and concluded on accepting that I’m on a tough roller coaster of a life, with a hell of a lot of ups and downs. It feels like maybe my therapist’s objective is to get me to accept that I’m dying so the roller coaster thing seems a good compromise.
I torment myself with things I’m going to miss. I want to see how my nephews are going to grow up. What will they do with their lives? Where will they be? Who with? I want to be there for their wedding days, I start imagining it happening without me. It’s really sad, this is a certain way of invoking a big cry. A block somehow stops me from imagining Ivy’s adult big days. She’s so young that, unlike my nephews, I can’t see even a glimmer of adult in her! So it seems I focus on more “realistic” events, things I might get to see. Her first day of high school is the image comes round every so often. I imagine Dee and Ivy sitting at the kitchen table having a debrief on the first day. I don’t want to miss it, I really don’t.
Well there we are, that’s the death stuff covered. Again. It comes around often for me, so now you have a little insight. Sorry! Turns out writing was quite therapeutic and I feel a bit better now. Big Cry done.
I’m torn now between getting this sent, explaining the hotel story, telling you why there’s no music in the MRI scanner and writing about how “Positive” I am… Maybe next time.
Because it’s easier to answer this now and maybe you’re thinking the questions… What can you do? I’m checking into the Walton Centre on Monday the 14th of October. Maybe send me a message? It’s going to be a long, boring and anxious wait. I’ll probably be on my own from 8pm when visiting hours end until I go down for surgery on Tuesday morning at somepoint. You can send me a whatsapp or a text or a email, funny memes, general chat, family news that sort of thing all welcome. Same goes for the post surgery time, I expect to be in hospital until the Friday at the earliest and at home recovering quietly for at least a couple of weeks. Visiting hours are 12pm to 8pm so send me funny things in the mornings? I’ve no idea how I’ll feel though. Corinna’s coming to accompany me in Liverpool from Monday til Thursday. I’ll ask her to send an email update when I’m out of surgery so you can find out how I’m feeling. If you’re reading this on my blog and would like to get updates by email I’ll add you to my list if you send me a message from the homepage (scroll down).
Lots of love, Amy
p.s. Dee and I just read over this and now I need to say one more thing because we’re feeling lucky… To quote Dee, “Apart from this, life isn’t hard”. That’s worth sharing. We’re lucky, business is going well, we can afford to take time off when we need to and we’re surrounded by love. I do feel sorry for myself from time to time, but we’re lucky. Apart from this, life isn’t hard.