Primary Brain Tumor (Glioma)
Discussion
cRaigAl205 said:
Unfortunately I have no kind of insurances/cover in place, but the main thing is I'm not going to starve at least well until the medium term. I've got 4 weeks full sick pay in any 12month period (and work are super awesome and already making noises about 'doing the right thing' after that) I have no intention of taking the mick, but hopefully by then we will be discussing some kind of pro-rata/part time/wfh arrangement.
I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)
Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
The surgeons do their job very well generally, that is all. There's nothing in the way of psychological preparation/followup or financial help.I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
Edited by cRaigAl205 on Sunday 28th May 19:49
You should be entitled to PIP depending on how your health is being effected. You will be awarded a no means tested payment. It also gets back dated so it's worth putting in the claim as soon as you can. You can also be entitled to a blue badge if needed. Macmillan should be able to help you with the following.
They don't half manage to obfuscate things though!! marked1 said:
You should be entitled to PIP depending on how your health is being effected. You will be awarded a no means tested payment. It also gets back dated so it's worth putting in the claim as soon as you can. You can also be entitled to a blue badge if needed. Macmillan should be able to help you with the following.
And PIP isn't classed as taxable income. If you have other income over £12570, you'll still get PIP in full with no effect on your other income. Might be worth looking at Access to Work as well, https://www.gov.uk/access-to-work
cRaigAl205 said:
Cheers, I think its helping keep the existential dread at bay! :
My advice would be to deal with it/confront it. If you can rationalise it/come to terms with it you will find it easier to move forward after your op. Yes, money for food to eat is crucial, and if you find yourself on a cancer pathway (I'm sure this won't happen though) you will be offered free protein/calorie drinks etc.One of my friends had a huge tumour removed in October 2021. It was somewhere around 25% of the volume of his skull. Absolutely massive. I have seen the MRI.
He both survived the op and has since made a full recovery. Purpose of me writing this is to say, stay calm and keep a positive outlook on it all. Don’t jump to conclusions and let the docs do their job.
He both survived the op and has since made a full recovery. Purpose of me writing this is to say, stay calm and keep a positive outlook on it all. Don’t jump to conclusions and let the docs do their job.
Thanks guys, it is appreciated. I recon (as far as its possibly to objectively analyse yourself..) the morale and "emotion" side of things is holding up pretty well. I've never put much stock in 'the power of positive thinking' (but not to the point of despair or defeat as an alternative), just that pity, worry or panic isn't actually going to improve my lot or, bluntly, make any difference to the outcomes and will just take up a lot of time & energy in the meantime.
It does help and provide comfort that everything they definitively know so far has been at the positive end of the spectrum (likely Grade, position, blood flow connections, even my age and general health all filter in), but ultimately if something similar was in my thigh rather than top & center of my skull we would be having an entirely different conversation in terms of risks of surgery and general outcomes. I also struggle with %'s and likely outcomes when you remember that a general anesthetic is enough to kill you if you react badly to it etc, or you could get hit by a bus on the way to the operation, but I suppose that further reinforces that worry isn't useful or relevant!
The only 'downer' at the moment is the ongoing symptoms (which in the grand scheme of things aren't that bad and are perfectly manageable), do act as a somewhat constant reminder. Fortunately the steroids have knocked the banging headaches and visual symptoms on the head and no sign of any more seizures, but I have been left with a fairly regular tremor down both arms (driving a mouse or carrying glasses of water certainly takes more concentration), as well as Bambi on ice balance and general coordination etc.
Still, only just over a couple of weeks to go, and plenty to keep me occupied with in the meantime, plus work is a boon in terms of having a 'regular' routine to keep me occupied!
Cheers,
Craig
It does help and provide comfort that everything they definitively know so far has been at the positive end of the spectrum (likely Grade, position, blood flow connections, even my age and general health all filter in), but ultimately if something similar was in my thigh rather than top & center of my skull we would be having an entirely different conversation in terms of risks of surgery and general outcomes. I also struggle with %'s and likely outcomes when you remember that a general anesthetic is enough to kill you if you react badly to it etc, or you could get hit by a bus on the way to the operation, but I suppose that further reinforces that worry isn't useful or relevant!
The only 'downer' at the moment is the ongoing symptoms (which in the grand scheme of things aren't that bad and are perfectly manageable), do act as a somewhat constant reminder. Fortunately the steroids have knocked the banging headaches and visual symptoms on the head and no sign of any more seizures, but I have been left with a fairly regular tremor down both arms (driving a mouse or carrying glasses of water certainly takes more concentration), as well as Bambi on ice balance and general coordination etc.
Still, only just over a couple of weeks to go, and plenty to keep me occupied with in the meantime, plus work is a boon in terms of having a 'regular' routine to keep me occupied!
Cheers,
Craig
It's hard not to think about the small percentages and focus on them, it's quite the emotional rollercoaster isn't it? Some days I rarely think about it and other days it seems all consuming and impossible to deal with. I read a story yesterday morning about one of the editors involved in 'Sex Education' and 'Catastrophe', I won't go into it here in detail (very advanced form) but I just sat and cried my eyes out.
I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
Edited by unexpectediteminbaggingarea on Friday 2nd June 08:14
Arnold Cunningham said:
One of my friends had a huge tumour removed in October 2021. It was somewhere around 25% of the volume of his skull. Absolutely massive. I have seen the MRI.
He both survived the op and has since made a full recovery. Purpose of me writing this is to say, stay calm and keep a positive outlook on it all. Don’t jump to conclusions and let the docs do their job.
That's incredible to hear. I have kind of put off googling this matter because the "things" and issues are so nuanced that no two situations are alike, and as a consequence their outcomes very different. He both survived the op and has since made a full recovery. Purpose of me writing this is to say, stay calm and keep a positive outlook on it all. Don’t jump to conclusions and let the docs do their job.
Thanks for sharing, it's truly amazing what is possible.
unexpectediteminbaggingarea said:
It's hard not to think about the small percentages and focus on them, it's quite the emotional rollercoaster isn't it? Some days I rarely think about it and other days it seems all consuming and impossible to deal with. I read a story yesterday morning about one of the editors involved in 'Sex Education' and 'Catastrophe', I won't go into it here in detail (very advanced form) but I just sat and cried my eyes out.
I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
Yep, there are so many different directions and distractions to be pulled in it can be overwhelming. I'm finding to-do-lists and admin helps..! I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
Edited by unexpectediteminbaggingarea on Friday 2nd June 08:14
I certainly found getting a definitive op date helped a lot, hopefully yours comes through soon. A friend pointed out with mine that while its a few weeks away, its still shorter than the max time they said it could be, and also that its not like they want to do it... tomorrow, which might have suggested a higher level of panic/urgency.
In what felt like an amazing and unexpected piece of forward planning, they did all of the pre-op assessment stuff during my first visit to the QE in Brum to meet the consultant, so all being well, bar perhaps a phone consult I should be able to just rock up on the day!
Here is a link to an interview he did a while back : https://www.facebook.com/MANUP.how/videos/97850893...
(I am the guy he refers to in the interview about knowing someone who had a brain injury a few years back)
(I am the guy he refers to in the interview about knowing someone who had a brain injury a few years back)
I'd also strongly advocate for the 'getting your affairs in order' stuff as well. There's a fair chance people are more organised than me, but as a mid-30s single, child-free adult male, while I didn't quite have a carrier bag with everything important stuffed in, it wasn't as good as it should be.
While initially a bit bleak to start thinking (and talking) about Wills, Lasting Power of Attorney Forms, DNR's etc, it does provide quite a lot of comfort and calm knowing a) everything would be as easy and friction-less as possible to administer and b) what I want has been made clear.
Cheers,
Craig
While initially a bit bleak to start thinking (and talking) about Wills, Lasting Power of Attorney Forms, DNR's etc, it does provide quite a lot of comfort and calm knowing a) everything would be as easy and friction-less as possible to administer and b) what I want has been made clear.
Cheers,
Craig
I've now received a copy of the letter from the clinic from meeting the consultant based on the thoughts of the MDT, which was apparently already over three weeks ago (where does the time go....? 
). It's interesting as to what felt like the takeaway/general tone from the face-to-face meeting and then seeing it in black-and-white. I suppose its not that surprising when hearing this sort of stuff for the first time, not all of it really goes in and sticks to a fully meaningful level. Plus I think the letter its clearly more 'broad' in terms of outlining the full range of possible outcomes and risks, which is fair enough as it is now officially 'on record'.
I guess my take away is it seems they are really only trying to get out as much as they can (reading between the lines, removing all seems to be off the cards already based on the MRI scans, its size & integration) which suggests that surely chemo or radiotherapy will be needed afterwards to nuke it to stop it just growing back? Both were of course mentioned as potentially required follow on treatments, but they seem more likely now. (both appeal less than the surgery TBH owing to the likely grim side-effects..). But I suppose that's what the biopsy/testing is for to establish if its aggressive.
I think on balance I'm still more "positive" than I could be, but it still feels like bit of a kick in the 'nads. Mainly because it seems fairly clear (to me anyway) they aren't going to get all of it out (or even necessarily try to do so), and its on the...large side (I like the use of the word 'colossal' as well..). I was of course aware of the generic risks of brain surgery, up to and including death & 'profound deficits', but I guess its the sort of thing you process slowly.
I suppose the biggest take away is the casual drop in of "subtle changes in work responsibilities based on impacts to non-verbal functions and visuospatial skills" .... So no more colouring in between the lines..? I think being honest I probably hold too much stock tying 'myself' and value and productive output based on job/career (I mean, it did take me nearly a decade to qualify as an Architect, so I think that's fair enough!?
) so risks to that seem a bit bleak and scary.
Still, time is barrelling along, and its only two more weeks now until the op date. I'm still getting all kinds of life admin and organisation bottomed out (as well as still working pretty much full time) so staying occupied shouldn't be a problem. Symptom-wise I'd say I'm feeling a bit worse as time passes (mainly minor stuff like tiredness, balance & coordination issues and pretty persistent arm tremors (the tablets have definitely helped with the headaches and no more seizures, so that's great). Its certainly manageable, but does act as a pretty constant reminder.
Anyway, I think this post is mainly for my own benefit just to get my thoughts out clearly, but I thought I'd chuck it out there as I've already benefited from the support on here. Will keep you guys posted as and when!
Cheers,
Craig
). It's interesting as to what felt like the takeaway/general tone from the face-to-face meeting and then seeing it in black-and-white. I suppose its not that surprising when hearing this sort of stuff for the first time, not all of it really goes in and sticks to a fully meaningful level. Plus I think the letter its clearly more 'broad' in terms of outlining the full range of possible outcomes and risks, which is fair enough as it is now officially 'on record'. I guess my take away is it seems they are really only trying to get out as much as they can (reading between the lines, removing all seems to be off the cards already based on the MRI scans, its size & integration) which suggests that surely chemo or radiotherapy will be needed afterwards to nuke it to stop it just growing back? Both were of course mentioned as potentially required follow on treatments, but they seem more likely now. (both appeal less than the surgery TBH owing to the likely grim side-effects..). But I suppose that's what the biopsy/testing is for to establish if its aggressive.
I think on balance I'm still more "positive" than I could be, but it still feels like bit of a kick in the 'nads. Mainly because it seems fairly clear (to me anyway) they aren't going to get all of it out (or even necessarily try to do so), and its on the...large side (I like the use of the word 'colossal' as well..). I was of course aware of the generic risks of brain surgery, up to and including death & 'profound deficits', but I guess its the sort of thing you process slowly.
I suppose the biggest take away is the casual drop in of "subtle changes in work responsibilities based on impacts to non-verbal functions and visuospatial skills" .... So no more colouring in between the lines..? I think being honest I probably hold too much stock tying 'myself' and value and productive output based on job/career (I mean, it did take me nearly a decade to qualify as an Architect, so I think that's fair enough!?
) so risks to that seem a bit bleak and scary. Still, time is barrelling along, and its only two more weeks now until the op date. I'm still getting all kinds of life admin and organisation bottomed out (as well as still working pretty much full time) so staying occupied shouldn't be a problem. Symptom-wise I'd say I'm feeling a bit worse as time passes (mainly minor stuff like tiredness, balance & coordination issues and pretty persistent arm tremors (the tablets have definitely helped with the headaches and no more seizures, so that's great). Its certainly manageable, but does act as a pretty constant reminder.
Anyway, I think this post is mainly for my own benefit just to get my thoughts out clearly, but I thought I'd chuck it out there as I've already benefited from the support on here. Will keep you guys posted as and when!
Cheers,
Craig
I suspect that "colossal" is meant to be "callosal" i.e pertaining to the corpus callosum which is an area of the brain https://en.m.wikipedia.org/wiki/Corpus_callosum
I am not a neurosurgeon but I work with them, they seldom say colossal but often say callosal.
Best of luck with it all
I am not a neurosurgeon but I work with them, they seldom say colossal but often say callosal.
Best of luck with it all
That does entirely make sense as I think it is top and center between the two hemispheres (from your link) "[The] callosum spans part of the longitudinal fissure, connecting the left and right cerebral hemispheres, enabling communication between them."
Quite a lot of reassurance for a Sunday morning, so thanks!
Quite a lot of reassurance for a Sunday morning, so thanks!
I take my hat off to you Craig. I'm not sure I'd be as rational as you in the same circumstances.
I can't offer any medical advice but what I would say is that it might help to focus on the op and no more. I expect in your profession there are times when it's pointless discussing until you have more information.
This is the same. It's a good thing you survived the seizure. It's a good thing that they know broadly what they are dealing with. It's a good thing that they want to operate and it's another good thing that soon you will have a lot more information to work with.
I hope speaking and sharing on here helps. I'm sure everyone reading your story will be, like me, wanting to do anything they can to help you get through this. Don't underestimate the power of positive thought. You'll get through the op and then you can see what you need to do next. From where you have been, that is a huge positive.
I can't offer any medical advice but what I would say is that it might help to focus on the op and no more. I expect in your profession there are times when it's pointless discussing until you have more information.
This is the same. It's a good thing you survived the seizure. It's a good thing that they know broadly what they are dealing with. It's a good thing that they want to operate and it's another good thing that soon you will have a lot more information to work with.
I hope speaking and sharing on here helps. I'm sure everyone reading your story will be, like me, wanting to do anything they can to help you get through this. Don't underestimate the power of positive thought. You'll get through the op and then you can see what you need to do next. From where you have been, that is a huge positive.
Thanks. Sometimes I worry that I might be too rational for my own good, and do fear with this that I'll have some kind of epic mid-life crisis response to it at some point when it really lands, but hopefully in true PH form it will take the shape of a wildly impractical and/or tragic car purchase or similar! 
You are very much correct with the strategies taken over from work- I try to work to and direct clients towards 'decision gates' wherever possible i.e don't try and decide or design everything at once, but instead focus on what you know and what is definitive. Seems to be helping so far at least!
Cheers,
Craig
You are very much correct with the strategies taken over from work- I try to work to and direct clients towards 'decision gates' wherever possible i.e don't try and decide or design everything at once, but instead focus on what you know and what is definitive. Seems to be helping so far at least!
Cheers,
Craig
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