Sorry this is a bit late arriving. I know you know that the pathology meeting was last Thursday which is a full a week ago and I’m sorry if you’ve been worrying about me. We’ll get to “Amy’s Scientific and Medical Advisory Board” some other time, if think you’re on it your probably are. I have an amazing group of clever and kind friends! But just to get a quick summary in early: upon discussion with my lovely doctor friend she described the results thus “that’s the better end of the spectrum of possibilities”, this is a very eloquent and concise description of my reality. It could have been a little better or an awful lot worse.
This brings us to a section I’ll be calling “QUESTIONS PEOPLE ASK…” Now, if you have asked these questions please don’t take it personally, you are completely normal and are not the only one who asked. I’m not upset of offended I just think there’s a funny/dark side. This is in the format “what they say – what they mean”…
How are you?
Where on the scale between alive and dead are you right now?
Or… I like to interpret this as a kindly
How is your recovery from surgery going?
I’m not too bad thank you. Technically, just like you, somewhere on the path between alive and dead, but hopefully nearer alive than dead. Unfortunately statistically speaking, nearer to death than birth. Also, I feel very alive, I’m not at all ill and have never felt ill.
Recovery-wise, I’m feeling better everyday. I’m still tired, but not absurdly so. I’m still a bit bleary-eyed but my eyes feel a little more sharp than before and I’m optimistic they’ll be back to normal pretty soon. My scar is well-healed and is really not that obvious at all now. Before long, I won’t look in the slightest bit hard/tough/criminal. Another plus is I don’t see to have any “cognitive deficit” i.e. brain seems to be in full working order. Also, not even the hint of a seizure so I’m feeling pretty positive about that. I still can’t open my mouth properly which is a bit annoying and I’m really scared of loud noises which isn’t entirely new. It’s almost funny except a bit weird just quite how upsetting being surprised by a big noise is.
How was the pathology meeting?
How long have you got to live?
Well I’m not telling you. The surgeon can’t really tell me. Nobody knows. There was some talk of statistics and averages. The range is very big, there are plenty of people who’ve survived a very long time with this and I plan on joining them even if they are in the statistical minority. I can share three things that I’m quite certain of.
i) I’m extremely unlikely to die in the next two years so I’m not going anywhere fast.
ii) I’ll get a fair bit of warning before I pop it, in the tumour’s current state it’s not going to kill me. What’s dangerous is if it grows and/or, particularly scarily, mutates into a higher grade cancer. I’ll be under “surveillance” (regular MRI scans) for ever. If one of the scans shows “progression”(in this particular case, progress is a BAD thing) I’ll be offered a range of treatment options – further surgery, radiotherapy or chemotherapy. Most likely all three though this depends on the nature and aggressiveness of the progression.
iii) I have a Grade 2 Astrocytoma. It has a genetic mutation called IDH1 which helps a bit. IDH1 mutant Astrocytomas are a little slower growing than non-mutant IDH1 Astroctyomas. However, this type of tumour (Astrocytoma) doesn’t respond well to Chemotherapy, I’ll be offered it anyway but it’s unlikely to help much. Best news of all is that the surgeon likes THE PLAN. Well, he didn’t say THE PLAN was crazy and appeared to smile a bit at THE PLAN and agreed that a step change in Glioma treatment is overdue.
Unfortunately, regarding the pathology report I strongly suspect that I’ve had rather the “Tesco Value” of pathology reports. I challenged MR H* quite hard on this, my research had led me to believe there’s a lot of interesting things we can find out when looking at tumour genetics and IDH1 appears to be the only thing we know about mine. The surgeon was decidedly unhelpful and evasive when we pushed him for more on this. Given that his general nature has been pretty kind, explanatory and helpful and I was rather concerned by the evasiveness. I have my suspicions about the reasons behind this, something to do with the outsourcing to Nottingham and who might have decided to outsource (hint – probably not the surgeons’). It’s brought a new line of attack in research and reading (ie consulting with the Advisory Board) which is “Where is MY tumour? And, Can I have it back? Can I procure my own genetic testing?” The thinking behind this is that the consensus on the “How are we going to fix Amy’s Brain?” question is “Advances in genome editing / personalised genetic medicine / clever gene stuff I don’t completely understand”. So I’m worried that a) my tesco value pathology report doesn’t have much information in it and b) my tumour sample has disappeared or been cut up and sent to science labs for them to play with (I did say they could do this, though I don’t suppose they call it “playing with tumours”). If it’s lost and someone comes up with something clever they might not be able to help me without going fishing in my brain again. I’d rather have the data available more speedily and less painfully should I be lucky enough that there’s a match between a new treatment option and my unique tumour DNA. I love the NHS and am seriously impressed with the amazing things they can and do do but in this particular case it might be worth a little extra private cash on the off chance it pays off later.
* I decided it might be sensible now my writing is in the public domain to anonymise it, wouldn’t want to upset anyone.
Whilst we’re talking about THE PLAN, if you haven’t read it you can see it here – https://amysbrain.co.uk/
This is my Very Important Plan, because it is. Now what is lovely about THE PLAN is that all my friends and loved ones can participate in it. It’s hard to describe just how moved I have been by the donations that have come in for the Brain Tumour Charity. Every time someone has given something I get this lovely heart bursting feeling -“Yay! Another person buying into THE PLAN”. If you’ve literally bought into the plan – Thank You, you made me feel all happy, energised and supported. If you’ve spiritually bought into the plan – Thank You, that feels nice too. The Brain Tumour Charity are putting all the money from my page into “Research” so that’ll help with the VIP. What else is very exciting is the amazing awesomeness of some friends and they’re unique and wacky and brilliant fundraising ideas. I think it’s going to be an exciting year. Lucky me. Of course, I am open to any / all fundraising ideas, just get in touch and /or get on with it! I’d like to think I’m a good excuse.
Lucky is an interesting word. Statistically, right now you I can tell you exactly how unlucky I am. Cancer incident rates in the UK for women age 35-39 is 162 per 100,000. So let’s call me “Quite Unlucky” on that one. However, if you’re going to get cancer there’s a pecking order. Really you’d rather not have any of them. However, some are significantly more deadly than others. Brain cancer is right down the bottom of the “if you could choose a cancer, which one would you like the best?” list. Can you play some sort of “Shag /Marry /Kill” game with cancer? Or, alternatively “Cancer Top Trumps” I think I’d call it “Cancer Bottom Trumps” because that would be a bit funny. And, my imaginary categories include “adjusted life expectancy” “average age of diagnosis” and for these, bottom of the numbers wins. High good, low bad. Anyhow, in the Cancer Bottom Trumps game, you wouldn’t want this one really. Could be a bit worse, could be a lot better. Let’s go with “Very Unlucky” on that one. However… if you’ve got to have Brain Cancer then you’d really quite like my one (it really is the better end of the spectrum of possibilities) so we can call that “Fairly Lucky”.
Interestingly, I’ve always thought I’m a very, very lucky person. I could go into the detail around this and count all of my blessings but It’d be a bit long and boring. It’s just a thing I can’t help. It’s a family trait I share with a few others, most notably Mum and nephew Max. The long blessings starts by being born into a family who love me and can afford to feed me etc. and ends up getting to spend the last 8 years with the love of my life then being joined on the journey with the Best baby. Lucky me got to do amazing things, meet wonderful people, see beautiful bits of the world, got to study in a really special place, have this brilliant business, live in an awesome place. Unlucky me got brain cancer. Overall, I’m pretty sure I’m still lucky but it’s not quite as clear cut as it was. Although had I put an accumulator bet on getting 3 life-threatening illnesses by the age of 35 I would be very rich indeed, that was extremely unlikely. Luckily, I sailed through the other two!
Righty-ho, that’s all for now folks. Thanks for all the love! There’s more to write of course but I’ll get to that next time.
Lots of love,
p.s. while I’ve got your attention could you just pop here – https://petition.parliament.uk/petitions/169667 and sign. It’s a petition aimed at increasing the government funding for brain cancer (just 0.5% of government cancer research money goes towards brains which disproportionately low)