There are many positive things I can tell you about. But, before I get too happy- clappy, be in no doubt, I still have a miserable, deadly, shitty brain tumour. That said, on with some good news…
Firstly, I appear to have come out of the surgery with a little bit more brain(iness) then before I went in. I seem to have more energy and improved speed of thought. Amazingly, I seem to be marginally better at squash, I think probably my reaction times are a tiny bit faster and I also played some shots that I haven’t done in years, it feels like the tumour was just getting in the way of some thoughts and also hiding some information (e.g. “gelatine” & certain squash shots). I was also spontaneously a bit better at Welsh and all round a bit sharper. Not super powers just rewind a few years to when I was a bit cleverer. I think I’d put a bit of my decline in brain sharpness down to ageing, turns out it was probably my squatting egg.
More great news. I touched on this before but I can now reveal a little more detail about my amazing “Scientific and Medical Advisory Board”. I am extremely lucky to have gathered a fantastic group of clever friends. If you think you might be on the my special SMAB you probably are. It includes:
Scientists – One who does clever genetics stuff so can, and does explain all the complicated things that I read about but don’t quite understand. Another who works in the Oncology department at a leading pharmaceutical company. A scientist/medic (who I haven’t seen since we played in the county youth band together in 1999) at Cancer Research UK who happens to know a fair few brain research people and has generously offered to set me up with the brain experts for a coffee next time I’m in Cambridge.
Doctors – a very helpful friend of a friend who is a Neuro-oncologist and a very old friend from college who I’ve reconnected with and happens to be a radiologist with a scary amount of experience looking at brain scans and a lot of brainy brain contacts. Ever so handy! Additionally I’ve found I have two old friends with contacts in the medical brain worlds in two other countries which is very nice. Firstly to double check that the NHS approach is consistent with or better than other countries and secondly in case something terribly excting is happening abroad that I should be getting involved with.
Clinical Trials people – two friends in this business, not a bad place to have helpful folk on the look out just in case something interesting pops up and/or I oneday need to understand a bit more about the process.
I realised that I need to make a quick update to tell you how brilliantly well I’m feeling. The egg, and the egg puns, have finished so I may have to think of a new theme for my email titles from now..
So a few things to cover, extremely quickly now then maybe in more detail later.
1) I’m feeling great. I’m full of energy and the brain is on tip-tip sparkly form and I can see as well as ever. I was tired for about 2 weeks, then a bit less tired for a few more then from 6 weeks on, all great. I’m sorry I didn’t update you sooner, I just got caught up in the million jobs that I suddenly had enough energy to crack on with. And, a bit of playing with Ivy of course.
2) I have the most amazing Scientific and Medical Advisory Board. They are an extraordinary bunch of people who I’m privileged to call my friends. I am going to write about this more another day because it’s almost unbelievable the number, depth, breadth and expertise who have appeared to help me.
3) I’ve been reading obsessively about brain stuff, this is in my nature as I tend to read obsessively and intensely about anything I’m very interested in. Unsurprisingly I’ve become very interested in this. I am very lucky to have my chief scientific adviser to quiz… brain stuff is quite complicated. I’m feeling very optimistic about life and about the prospect of treatments coming online in time to help me.
4) There’s been an amazing fundraising effort which has blown me away. Flipping awesome effort friends and further afield friends and friends of friends and possibly a few random almost friends. We’ve raised over £10k on my justgiving page ( https://www.justgiving.com/fundraising/amys-brain). My amazing Brighton based friends had a garden sale (sound a little bit like a party that I sadly missed) and raised a shed load of cash. A friend is cycling 1300 miles to Spain (https://www.justgiving.com/fundraising/HTrain) which is jolly impressive. And, another doing a half-marathon (https://www.justgiving.com/fundraising/stevebrown1000). All of this is going into brain tumour research, specifically for Adult Gliomas (my type of cancer). This is without even touching on the rather fantastic ideas I know are in the pipeline. If you fancy doing something crazy or slightly less crazy then do just get in touch. It’s very fun, exciting and energising for me and I feel very special and supported. Thank you and loads of love! xx
5) I have a story to tell you about my great admiration for my Italian friends, Signore e Signora Panino. I don’t have time now as I’ve suddenly realised just how important it is to send this message so you can read number 1.
Lots of love,
ps I’m really happy for anybody and everybody to read this blog. So, if you’d like to direct friends / family / random strangers toward it then that’s great.
It’s out I’m out. Just a little update…
It was nasty and quite sore – violent bit of surgery cutting a hole in the skull, also I have lots of stab wounds where my head was pinned onto the operating table. And a rather sore jaw and a sore eye too, they cut through a chunk of face muscle during the process so that has to heal too. This has left me with a fantastic black eye on the right hand side.
Just a quickie, I’m all checked in at my private suite (side room yay!) in Hotel de Walton. Had some slightly soggy fish and chips but wasn’t that hungry anyway. Dee, Ivy and Corinna have gone off to explore the airbnb flat down the road then they’ll be back for Ivy’s final feed before bed.
On the plus side, I’m just lounging around in my room doing very little. Something I haven’t done for this long since before Ivy was born.
I’m first on the list tomorrow morning which is good news, catching a human powered ride on the wheelie bed 8.30ish and I’ll be fast asleep about 9am. All being well, Dee or I will send an email sometime tomorrow afternoon or evening with a mini update.
Just discussed the surgery with the surgeon again. All ok though still some concern about the eyesight after which is a bit worrying, but just a bit of vision not the whole lot. Other than that all fine. Big blue arrow felt tipped on my neck just to make sure they cut the skull hole in the correct side.
Thanks for the kind and lovely words/things/conversations/thoughts etc. I’ve never felt quite so loved, it’s really nice. I’m pretty good at surgery though so not too stressed, it’s really all the crap afterwards (this bloody life expectancy business) that worries me most.
Lots of love
There’s not much new information, though I seem to have found plenty to say. Do skip ahead if you’re finding it a bit dull, I won’t know and wouldn’t be offended even if I did.
“Are you going to do the surgery yourself or will you be letting your students operate?” Again, not totally reassured on this. There will be students present, they might get a shot at my brain but he will be supervising closely. No he won’t be popping out for a cup of tea. When pushed on this a bit further I got to the answer I was hoping for “Yes, I will be doing your surgery”. I suspect he just said that to shut me up, he very well knows I will be completely knocked out and can’t actually check on this. He thinks there is no benefit to awake craniotomy. Maybe because he knows I might just ask questions all the way through.
1) I’ve been getting something called “depersonalisation”, it’s very trippy. Basically I look down at my hands, arms, fingers, legs etc. and they just don’t belong to me. My hands look way too pretty, I often think they must be my sister’s hands.
2) I started loosing words. This is really strange. I lost the word “gelatin”, then I tried to tell mum the story about how I lost the word “gelatin” and couldn’t finish the story except by trying to say “that stuff in marshmallows from cows stomachs”, which of course is was wrong, that’s tripe (euch) and rennet, gelatin comes from cow’s bones. Or so I thought, I just googled this, new fact for you, 44% comes from pig skin. This was distressing (word loss, not origin of gelatin) so I made sure to try and re-remember the word gelatin everyday. After four days of telling myself the gelatin story and using Dee’s remembering system – children’s party -> jelly -> gelatin). I relearned the word and can now tell the gelatin story easily. Though after sending this email I’ll have no one to tell it too without being really boring.
3) Fatigue. I wonder if this has been building for years. It’s hard to tell, I haven’t had the high energy levels I used to have and it might be the egg. Or maybe that’s just an eggscuse for laziness. Fatigue is also a common side effect of pregnancy, having a baby and lamotrigine. So who knows! It’s also a side effect of brain surgery so I won’t find out for quite a long time, if at all because by then it could still be lamotrigine/tumour growth/ side-effect of having a toddler
Can you take the tumour home to live in a jar?
I’d really like to do this. However, I’m pretty sure it comes out in little pieces rather than in one big lump. I’ll ask the surgeon though and let you know!
Not much new news yet. I spoke with the specialist nurse yesterday who didn’t have much positive to say except that we can’t be sure exactly what’s going on until after the surgery and the biopsy results are back.
- still some unknowns which at this stage can be read as a good thing, I’m still holding onto a tiny bit of hope that it’s all been a mistake and it is a DNET after all
- prognosis stats are always wrong (see this article for an explanation, especially if you defied my advice and did some googling – http://www.
journeybraincancer.com/single- post/2017/01/10/Prognosis- Statistics—Cancer)
- turns out I have amazing friends who are kind, loving and generous. I knew this already but now I know it extra special
- to quote my uncle Adam “In the hundred acre wood lives a bear with very little brain but everyone loves him anyway.” this made me smile x
- I voluntarily surrendered my driving licence which means I should be able to get it back quicker when the time comes and… I can get a free disabled persons bus pass which is quite exciting!
- I can’t be sad for too long with this little munchkin’s smiles and giggles…