Amy's Brain

The egg in my head

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Update 8 – End of the egg, punfree not funfree


Hello!!

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,
Amy xx

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.

Update 7 – Post Eggsit Brain


Hello!
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 – http://amysbrain.co.uk/donate/
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,
Amy xx

 

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)

Brain update 6 – EggBlog


Hi!

I wanted to write another update, it’s been a while! Two weeks ago I had the delightful “Eggstraction”. It wasn’t that awful but it is quite a violent bit of surgery. Of all the parts of the body where you’d want to be poked, I think the brain is probably up there on the “most unpleasant” list. Also there’s a hole in my head. I can’t really feel it though. I’m promised I’ll be able to see it on the CT scan. I’ll put another “data release” request in and get copies of the scans I think. Just in case. Also so I can send them to random doctor / scientist friends who might be interested / helpful.

 

There’s not much fun to say about my hospital stay really. The food was disappointingly poor but Corinna bought me mini M&S trifles which was the highlight of the day. Also some cheesy mash. Nurses Corinna and Dee were amazing. I had a slight falling out with the regular nurses about catheters (I cannot tolerate a catheter, it’s like someone pressing your wee button over and over and over again, this is not conducive to rest, relaxation or peace of mind). Eventually my “persuasion skills” won out (with a bit of help from Cory and Dee). Dee went to report to the nurses that “Amy is googling it right now, she says she’s going to take it out herself”. This was true. I was going to. I’m still feeling a little angry about it now. The nurses seemed to be of the opinion that as they had “helped us out” with the breastfeeding all my favours and been used up. I’m still feeling a little angry about it now but just managing to get over it I think! Makes me need a wee just thinking about it. Aaarrhhhh.

 

On the more entertaining side I did manage to upset the nice Italian doctor just a little bit. If you remember from my previous post, I had been quite firm with Mr H about how I’d quite like him to do the surgery himself and not let one of the “students” meddle with my brain. Dr Italian (we don’t actually know if he’s Italian but there was something about his Tank Top, Glasses and funny accent that seemed to hint it) was clearly a member of the surgical team – he came on all the rounds with Mr H and a bunch of other people. I later asked one of the nurses who everyone was and she said he’s a doctor who’s just about to become a consultant. I asked if he was “work shadowing”, apparently they don’t call it that. Anyway upon a visit from Dr Italian later I asked him, firstly “Were you there for my surgery”, “Yes”, he was. Then secondly, if he’d “had a go” in my brain, the answer rather pleasingly, “no, Mr H normally lets me, but not this time” I said “Yes, I asked him not to let any beginners play with my brain”, “I AM NOT a beginner”. Oh dear. I did apologise and I think I was forgiven. Apparently one of the side-effects of brain surgery is personality issues. Let’s blame it on that.

 

After the surgery, Corinna did an excellent job of keeping mum updated except for one slightly comic “My hearing is fine!!” incident. Corinna very accurately described my incisions as “very tidy” this was heard as “very tiny” and turned into a story along the lines of “it’s amazing what they can do, taking that enormous tumour out through such a tiny hole”. I think mum might have been under the impression that I had keyhole brain surgery. Unfortunately not. Which brings us briefly to my Cancer Hat. I’m actually rather fond of it, it’s a soft, think silky beanie which I bought thinking it might be nice to stop my stitches catching on clothing or my pillow and also to hide my very hardcore scar. However, the family’s conclusion is that it’s actually quite clearly a cancer hat and therefore much more disturbing and upsetting than the big scar. I suppose with just the scar you can pretend that I just got whacked over the head with a lead pipe. I occasionally sneak the cancer hat on anyway, it keeps my ears warm. Cold ears has been the oddest and least expected side effect of brain surgery. A week after the surgery I went to see the district nurse who tugged and pulled and snipped away at my 26(!) stitches. Unfortunately this didn’t fix my cold ears and I can still, occasionally, be found sneaking that cancer hat on to warm them up.

 

So who wants to see the scar?!
Here it is. With Ivy. And my brilliant sleeping-all-day onesie.

 

Since coming home, I’ve mostly been sleeping. Turns out all that brain poking rather takes the wind out of the sails. Dee is looking after me, the business and Ivy with some help from mum of course. Mum takes Ivy for a little walk whilst Dee has impressively been beating her “up and down the mountain behind the house” PB. I’m a little bit bleary-eyed which I’m hoping is down to tiredness rather than any optic tract damage.

 

As previously mentioned, I am not allowed to take the egg home in a jar. It has been sent off to Nottingham for analysis. From there, I’ve signed it over to be used in research. I’m not sure how it works but I like to think they chop it up into little bits and send it to the clever people who are busy working on brain cancer treatments. Tomorrow, I will be seeing the surgeon in Liverpool again to talk over this pathology report. It’s a big deal and has a significant impact on my prognosis. Rather distressingly Brain Tumours are crappy and not curable but I’d like to draw your attention to THE PLAN. I may have mentioned it before, but THE PLAN is to keep living for quite a bit longer then hope that some clever person has come up with effective treatments / cures for my sort of cancer. There’s plenty of hope around this plan and I’m sticking with it. At some point I will let you know at least some of the outcomes of tomorrow’s meeting but I need to be careful with just how morbid I get about it all so let’s see how it goes.

 

I’m also happy to announce that yesterday I was able to wash my hair. There was some debate and not a lot of advice forthcoming from the hospital nurses and the district nurse so I went with Dr. Google and decided that two weeks was an OK length of time to wait. I now smell DELIGHTFUL! Thanks very much to some friends who sent me away with a hospital bag of delights, smellies and entertainments. Lucky Me.

 

My short term plan is to be quite a bit better soon. I think I need more sleep but after that I think I will feel well again. I’ll be back on that squash court before too long!

 

Lots of love,
Amy xx

Brain update 5 – scrambled egg


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.

After a typically disjointed departure process I was eventually discharged with a little stockpile of drugs to keep me going. I’m now holed up in a wonderful barn conversion half way home for a couple of days of gentle recovery with Dee, Ivy and Corinna. Chris, Harry and Max are arriving tomorrow too.
I’ll write again soon, but good news for now. I had a follow up Mri scan today – more whizz popp bangs from the pesky gnomes. Mr H seemed very pleased with himself and happy that he’s achieved his target 95% out with very little eye damage I think,  though I am seeing the world a little differently still, quite blurry and wobbly, hopefully it’ll clear soon.
Sleep is much needed but not smooth, the head wounds are sore so a bit disturbing.
I’ve proudly managed to feed Ivy throughout which means we’ve had some wonderful cuddles over the last few days. Dee and Corinna have done an amazing job looking after both of us.
The next big step is a return to the Walton Centre in a couple of weeks for pathology review with Mr H. That’ll be a big day as it  will inform the prognosis as well as the next steps and options. Lot to think and worry about!
Lots of love from us all
xx
 

Brain update 4b – awaiting eggstraction

March 13, 2017

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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
Amy xx

Brain Update 4a


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.

I was luckily enough to spend an hour being completely still in the big noisy MRI scanner at the Walton Centre last Monday. Disappointingly, there was no music at all, not even the dreaded radio 1. The experience of trying to stay still for that long in one of the most claustrophobic and noisy places imaginable is not one I’d recommend. I had high hopes that I would peacefully mediate through this experience. I tried meditating for a while then started thinking about how MRI machines work. I couldn’t remember, though I think I probably knew once. What I did remember is something that my friend Ruth once told me about when she visited a Steiner school. Apparently, at Steiner schools if a child asks an “age inappropriate” question (e.g. a 7 year old who wants to know how a photocopier works) the Steiner answer is “the magic gnomes do it”. I think “how does an MRI scanner work” is probably age inappropriate for most of us so was able to spend a good twenty minutes picturing the little MRI gnomes who were having a disco, doing construction work, sawing down trees, starting up noisy engines, headbanging, playing the drums in a very boring way, digging roads, demolishing buildings and generally jumping up a down. By the end I had a very sore head and was feeling a bit fed up.

I did though, get a some pictures so you can see how scarily large my egg is, in case 6cm x 3cm x 4cm wasn’t scary enough. I’ve helpfully put a big red arrow on it in case you can’t tell where it is. For reference, the big white circles at the top are my eyes. If the circumstances were different it’d pretty cool to have an inside view of my head.

 

On Thursday I had a meeting with the surgeon. I think I’ve worked out why the neurosurgeons are always so chipper with me. The large majority of brain tumour patients are about to die fairly quickly (over 80%). I’m actually in a small minority of patients with a comparatively positive outlook. I think the surgeons have used up all their sad, sympathetic faces on the other people and only have the chirpy, smiley ones left for me.  He described the surgery plan, made me sign a disclaimer saying I understood all the risks (death, brain damage, the dreaded droopy face, vision etc. etc.) and answered my questions:

“I’ve got loads of brain, I’m sure I can spare a bit – can you just take the tumour out plus a little bit more and see if we can get 100% out?”  No. apparently this tumour infiltrate up to 2cm into the brain and they can’t see it, and even with my extra big brain I can’t spare 2cm all around the tumour. Given that we can be pretty sure that 100% is not achievable the statistics show that for anything greater than 85% removal there is not a significant improvement in life expectancy so the 95% he says he will remove is as good as it gets.

“Are you sure you’re the best person to do this job and you have the best available equipment?” I’m left reasonably though not totally reassured on this. There is new equipment on its way, intra-operative functional MRI. Its not ready to go yet and it probably won’t help in my case. In terms of people, he does plenty of this type of surgery and has been doing it for many years. There are probably others who will do a very similar job but not any better. This leads me to the next question…

“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.

After seeing the surgeon I went to meet the specialist nurses who gave a sort of physical once-over in preparation for surgery. This included tickling my feet. Apparently being tickled is not the appropriate response to foot tickling, who knew? Apparently they’re testing for some sort of reflex. Proud to say that despite the giggling I appear to have passed all their tests.

​My surgery is scheduled for Tuesday the 14th. I have to go in on the Monday afternoon, presumably so they can stick the dreaded “nil by mouth” sticker on my bed in advance.

I’ll probably send you an update from hospital next week. I’ll be twiddling my thumbs on Monday I imagine so might do so then. If not, I will happily accept positive thoughts, prayers (if you’re into that sort of thing) and postcards. Or, nothing at all is also perfectly acceptable.

Lots of love,
Amy xx

Eggsausting (Amy’s brain update 3b)

February 24, 2017

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FAQ. And/or the ones you were a bit to nervous to ask and at least one I made up because it’s a good question…
Go get a up of tea, it’s a long one!

 

Are you OK? Your emails seem very cheery?
The answer to this question is hidden way down at the bottom of this email… *
Don’t scroll down past the cartoon at the bottom if you don’t want to know the scary, sad stuff. I won’t judge you! Possibly don’t read this at work. If you’re a bit sensitive have some tissues handy. If you do want to read it, read it now then come back up to to here so I can cheer you up a bit.
 
How are you feeling?
In short, a bit weird. Lemotragine, the anti-epilepsy drug is kicking in so my seizures are less intense. However they still happen and that’s strange and worrying and they keep reminding me that I’m not well. I’m tolerating the lamotrigine quite well which is lucky, the list of side effects is terrifying. There’s also a few other things that I thought were just baby brain but are actually tumour related

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

All in all though, these symptoms count as pretty lucky and I’m not finding them particularly distressing. Some other people with brain tumours get debilitating headaches and/or seizures that cause them to loose consciousness or control or feeling in parts of their body.

 

Tell us the hopeful side again? (OK this bit is really for me to keep me perked up, but maybe you’re interested in this too)
I’ve been reading a lot. As you probably know, I’m an avid googler. I’ve started reading academic papers on brain tumours, news about brain tumours, websites about brain tumours, books about brain tumours and anything else I can find about brain tumours whilst carefully skirting round the really morbid stuff. So on the positive side. 1) Young & reasonably fit 2) Tumour not as voluminous as first thought (massive benign cyst in the middle) 3) Tumour accessible and very much operable surgeon can take most of it out. 4) Don’t know exactly what it is yet, this could be good or bad. 5) Life expectancy data is inherently out of date.

 

So, the good scenario is this – I out perform the life expectancy curve which is quite likely given positive factors above and say make it 10/15/20 years down the line by which point some clever cloggs has worked out how to have a reasonable stab at curing this thing (not completely unlikely given trends in treatments of other cancers and historic lack of investment in this one) and I get to do all the old lady things I’d been hoping for. Yay!

 

So really this could all be a big mistake and all the crying for nothing then I’ll feel a bit silly. And you lot will look back at me in 30 years time and say “remember that time when you thought you were going to die and got all het up about it. That was HILARIOUS!
 
Is there anything I can do to help?
Thanks! I’ll let you know. I have some thoughts on this, might get back to you later. I’m OK right now. I’m delighted that local friends have offered lifts, this is brilliantly helpful. It’s an arse not being able to drive.
 

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!

How cool will the scar be?
Really chuffing cool. Like a very hard person who’s been sliced up in the most dramatic way. However, I’ve bought myself a nice soft beanie hat to cover up in polite company (and for mum who doesn’t like that sort of thing).

 

Any other news?
Ivy has her first tooth. It’s sharp and I think the teething is affecting her, and subsequently my sleep. She is also trying very hard to crawl. After weeks of only going backwards she is finally making limited forward progress. Ideally she would just stop there for a while but I suspect she’ll keep on working and will begin to pick up speed soon.

 

Also, the universe has answered, and provided me with additional squash friends (actually possibly not the universe, I asked around and found a few people willing to give it a go – hopefully not just out of sympathy but I’ll take it either way)

 

Here’s a cartoon for you that made me laugh!

*
No, I’m not really OK, although I’m handling it all quite well. I’m not prone to panic. This was one of Dad’s best qualities and I like to think I inherited it from him. However, what sort of weird, emotionally stunted person would be OK with this?! It’s a crazy shit emotional nightmare. Basically we’ve just gone through a huge adjustment to my projected life expectancy. I’m not sure I really mentioned this in black and white before but low grade glioma is an incurable, very slow growing cancer/pre-cancer/not quite cancer yet (I think its category up for debate but it’s definitely not benign). Unless the diagnosis changes significantly after the biopsy I can be fairly confident of two things 1) I’m not going to be an old lady  2) This will kill me at some point.  This is very sad and has made me cry. Lots. And Dee too. We had to stock up on tissues. Twice. I was quite looking forward to being an old lady, sitting in the garden with a cup of tea and hanging out with lots of old lady and gentlemen friends and old lady Dee. I’m really quite interested in what the world will be like in 20/30/40 years. Plus I worry, it’s my job to look after Ivy. That’s what mummies are for. I feel sad for mum too, if there’s one thing that I imagine is worse than finding out you have incurable cancer it’s finding out that your child has. She’s not said much about how she’s feeling but I think it might be quite shitty. She also has her own support network, she’ll be OK.

 

However, I have read something once that I believe to be true. When grumpy, miserable people win the lottery they’re happy for a little while then revert to being grumpy and miserable. When happy, chipper people have accidents that cause them to become disabled they’re pretty miserable for a little while then readjust and continue to be happy and chipper. I think we’ve just had to go through / are still going through an adjustment process. Ultimately I’m still a pretty happy, optimistic, chirpy person. Just I’m going to die. We’re all going to die, but I’m very likely going to die a bit sooner than you. Also Ivy will be fine, Dee will be fine, everyone will be fine. Sad for a bit then fine again after because they’re pretty happy chappies. Bit too early to tell with Ivy but she always seems pretty happy and I’m betting she’ll take after her Mammie. There’s loads of love in the world, so much that mine will only be missed a little bit in the long run and they can get lots from each other and other places.

 

I discussed not sending this section because I don’t want to make everyone else miserable. It was cathartic to write maybe it’s done its job. However maybe it’s an opportunity for you guys to have a look at life and contemplate your own mortality and all that “living in the now” stuff. I think that’s probably healthy once in a while to contemplate your own mortality though I wouldn’t recommend dwelling on it! (IF YOU HAVEN’T WRITTEN A WILL GO AND DO ONE NOW YOU NUMPTY)

 

For us, it has certainly forced us to have a good hard look at our lives and what we’re doing with it. We were happy to conclude that we’re exactly where we want to be doing pretty much what we want to do and really wouldn’t change a thing. 

Brain Update 3a – Eggy Head


Very quick update. I’d like to write more but haven’t found the time and I know lots of caring, lovely people are patiently waiting/worrying and keen to know how it went this week.
I didn’t get an appointment at Stoke this week but did go to the Walton Centre in Liverpool. I much preferred it there and will go there for my treatment. It was more welcoming and better organised than Stoke. I met with a very senior neurosurgeon there so feeling like I’m in the right place with a good surgeon. I’ve a detailed scan a week Monday, surgery likely to be a week or two after that.
From the consultation:
– It’s still most probably grade 2 glioma. Astrocytoma or oligodendroglioma (try saying that with a marshmallow in your mouth!). Very small chance it could be something better and also very small chance it could be something worse.
– Tumour is pressing lots of brain areas, I think I’m lucky to be getting away without much wrong day to day – even the left hemisphere is a bit squished over
– Prognosis not possible until after biopsy (where they take bits of the tumour and look under the microscope plus a bit of genetic testing), I can get life expectancy information if I want it, 1-2 weeks after the surgery
– Mr H very optimistic that he can get well over the target of 85% removal, probably over 95% which improves prognosis
– Awake craniotomy unlikely as probably not necessary, surgeon isn’t worried about bumping into key functional areas
– He has some patients who have survived 20-30 years with grade 2 glioma, so plenty of space for optimism right now
– Minor risk to optic tract as it runs through the tumour it may leave me with reduced visual field (not that bad but may mean I can’t drive)
– Minor risk to left side of face – slightly lop-sided smile not full on droopy drooling
 – Of course some risk of death in surgery (<1%), seems like this would be a freak occurrence some sort of random brain haemorrhage, plus all the normal risks of infection etc.
Thanks so much if you’ve sent me a nice message – I do appreciate them even if I haven’t had time to write back. I’m feeling very loved.
Dee’s out on a park run and normally proof reads my emails as I am not very accurate with spelling, grammar etc. So errors are just me, probably not tumour related 🙂
I’m planning on writing something with a bit more chat and cheer shortly, there’s lots to say. In the meantime here’s something I think is funny
xx

ps can of squirty cream is to make fancy topped coffee, not for the nitrous oxide!

Brain Update 2b

February 10, 2017

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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.

The nurse said “it’s definitely diffuse” this means that the tumour doesn’t have a clear boundary and is growing into the surrounding brain tissue, this is bad news. Once the tumour is diffuse it’s very hard to get it all out so there is a tendency to leave little bits behind which then regrow and cause further damage. The more aggressive they are with the tumour removal the more likely cognitive damage. The less aggressive they are the more likely recurrence is. The best outcomes, it seems, come from the “awake craniotomy” so they can tread this line most carefully. The next step on that path is to meet the neuropsychologists who do lots of assessing in advance of the surgery then they would talk me through the surgery in process presumably asking me to solve problems, recall memories and chatter away to prove the brain is still working. I have been reassured that they put you to sleep for the bit when the skull is getting drilled. Phew.
On the plus side they’re trying to get me an appointment with the new surgeon next Tuesday, unfortunately the organisation seems to be pretty shambolic. The surgeon is just coming back from maternity leave so there seems to be a lot of uncertainty about her whereabouts and there is also uncertainty as to whether there will be a consulting room available. I have helpfully offered to meet in the cafe. We’ll see!
Better news, I have managed to arrange a 2nd opinion / consultation at the Walton Centre in Liverpool. This is fixed for Thursday afternoon with the head of neurosurgery there. This is great, the Walton centre doesn’t seem as shambolic or scary. My new brain tumour buddy is very enthusiastic about the Walton centre – apparently they a) pick up the phone b) have space to park and c) have great food. Two out of three of these Stoke have already failed on and I’m a little worried about c). Also, it seems that they are able to efficiently make an appointment. Hope is that I can go there for my treatment instead but it will be good to see the two places and meet the two surgeons. Easier to make a good decision now about where I get my treatment as it likely to be a lifelong relationship.
So on the plus side…
  • 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…

Brain update part 2a

February 4, 2017

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Well I went to see the neurosurgeon in Stoke on Trent on Wednesday and to sum up it’s not particularly good news. He took one look at the scans and was quite clear he didn’t think it was a DNET. Now we can just look back with nostalgia at the good old days when I thought I had such a such a low risk tumour.

The surgeon thinks it’s very likely that I have a “low-grade glioma”. Unless you’re in a morbid mood, I wouldn’t recommend googling this. DNET is still a possibility as are some other less nasty tumours. Whatever the longer term prognosis it’s likely to start with a tough year as the recovery from brain surgery is, for most people, quite lengthly.
The next step is to wait for a more detailed MRI and MR Spectroscopy so they can better diagnose the type of tumour and also so the surgeon can plan surgery. It’s quite clever really, the detail of the imaging they have available means they can very accurately plan out exactly what will happen in the surgery, compared with the old days when they pretty much opened you up and had a look. One of the scenarios is that I will have conscious surgery which sounds both scary and interesting, this would involve staying awake during surgery so that the surgeon can keep monitoring my brain function and make sure she doesn’t bop into anything too crucial.
Timescales: my case will be reviewed at an MDT (multi-disciplinary team) meeting on Wednesday. I should be able to speak to the specialist nurse on Thursday. The MRI and consultation with my new surgeon who specialises in gliomas is likely to be in 6-8 weeks and the surgery likely to 1-2 weeks after that. I’m hoping to get more information from the nurse on Thursday.
So to finish I can think of a list of positive things
  • I’m relatively young (outcomes are better if you’re under 40)
  • It turns out that my egg size tumour is not all tumour, but is part tumour and part very large cyst, I think this is good news as it means there are less of the nasty cells than there might have been.
  • The tumour appears to be operable and in a fairly good place, one side is near the surface of the brain so there is a clear route in. Hopefully the next MRI will confirm this.
  • I think there are several grade 1 types of tumour that this could still be which have broadly positive outlooks
  • This week I played squash and ate some yummy things which cheered me up. Anyone who wants to come and take me out for a game of squash would be very welcome 🙂
  • I live with and love these two wonderful people…


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