Primary Brain Tumor (Glioma)
Discussion
All the best Craig, it looks like you are under the QE so you will be in good hands. They have looked after me since late last year following my diagnosis. I remember getting a similar letter to you when I first diagnosed. It was a shock first reading it on paper. You do get used to the medical jargon after a while. The Cancer nurse specialists are pretty good. Don't be afraid to ring or email them when you have any questions.
Im due to go back on ward in a couple of weeks so we might cross paths. If i can help in any way please pm me. In terms of anti depressants, ive been on citalopram for a couple of months and they have worked wonders for my low mood.
Im due to go back on ward in a couple of weeks so we might cross paths. If i can help in any way please pm me. In terms of anti depressants, ive been on citalopram for a couple of months and they have worked wonders for my low mood.
Hi Craig
Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
Hi Craig
Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
cRaigAl205 said:
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
Wow.... that was a hard read. It really is a breeze block to the mental health seeing things in black and white. It seems like you are just taking it as it comes, and I think that's the only way to deal with this. It's great to hear your symptoms have eased off, and in the surgeons hands may it be.). 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 must say that since my last post and after the call from the surgeon my mental health has been in the absolute gutter. I felt shocking all weekend, really bad anxiety. Fortunately after a handful of emotional releases and being around my beautiful and funny daughter I have felt better, I just cannot help but fear the worst despite the low % risk given by the surgeon.
m30dus said:
Hi Craig
Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
Hope she's doing OK m30.Very infrequent poster here but wanted to give you some words of encouragement. My better half suffered a number of nighttime seizures out of the blue back in March 2021 and which were ultimately diagnosed as a Grade 2 diffuse glycoma (astrocytoma). Her tumour was about 6cm diameter in the frontal cortex and whilst she had surgery to take a biopsy to determine tumour type, removal was not an option to due to the diffuse nature and it being deep in the brain.
She was treated with radiotherapy and chemotherapy and whilst said to be life limiting to some extent, she has made a great recovery, back to work full time as a teacher and gets to apply back to the DVLA for return of her driving licence this week.
Importantly, on Keppra since diagnosis she has not had any further seizures.
I’m up in Edinburgh but if there is any support that I can offer please shout me back here. I know we had lots of questions at the time and there was sometimes reassurance to be found from speaking with people that had been through similar.
All the best for the next couple of weeks!
Surgery is booked in for the 19th of June, and the pre-op stuff is all done, so subject to any additional strikes or emergency patients that bump me down the list, its not long to wait at all now.
Off to the hospital today for an eye test which was booked in following my initial stay- I think to review Intraocular pressure/ Glaucoma risks based on increased intracranial pressure- but hopefully the 'roids have been bringing that down.
Off to the hospital today for an eye test which was booked in following my initial stay- I think to review Intraocular pressure/ Glaucoma risks based on increased intracranial pressure- but hopefully the 'roids have been bringing that down.
Thanks guys, it is appreciated 
Eye test clinic appointment was absolutely fine- field of vision and photography, followed by a chat with the consultant. Both optic discs are apparently bulging, but that is to be expected with the pressure etc. Other than that eyeballs are basically fine and as to be expected, no field of view or pressure issues whatsoever fortunately. Hereford (this was done locally rather than via the QE) are now going to discharge me and I can just get monitored by optician via annual eye test which I'm pretty hot on anyway TBH as I'm pretty paranoid/very short sighted!
They sensibly suggested getting an eye test/frame of reference on file before the op, so we can then monitor any change/improvement moving forward, so I'll get that done with the optician.
Next stop should be the OP now, nothing else booked in!
Eye test clinic appointment was absolutely fine- field of vision and photography, followed by a chat with the consultant. Both optic discs are apparently bulging, but that is to be expected with the pressure etc. Other than that eyeballs are basically fine and as to be expected, no field of view or pressure issues whatsoever fortunately. Hereford (this was done locally rather than via the QE) are now going to discharge me and I can just get monitored by optician via annual eye test which I'm pretty hot on anyway TBH as I'm pretty paranoid/very short sighted!
They sensibly suggested getting an eye test/frame of reference on file before the op, so we can then monitor any change/improvement moving forward, so I'll get that done with the optician.
Next stop should be the OP now, nothing else booked in!
Edited by cRaigAl205 on Friday 9th June 19:26
The novelty of feeling like crap warmed up is wearing off if I'm being completely honest. I think given the hot weather and general lack of sleep (and understandable stress/worry) I wouldn't be feeling great anyway, but I think the steroids are having a reasonable impact on mood, (and a few symptoms of the actual tumor are still coming through- but no seizures etc which is good), which is sapping enthusiasm. I've still been reasonably productive I think the last week or so, working up until yesterday, with the plan to have next week off as a minimum and then play it by ear.
I've heard from the hospital and they've found space on the ward for Sunday evening, which should massively simplify things compared to schlepping to the middle of Birmingham for rush hour Monday morning (via a lift because I obviously can't drive..!)
So its just a waiting game now really and trying to avoid overthinking/worry as well as trying to recharge battery and be as fresh as possible!
Will be back to update when I know more/am up and about the other side!! Thanks for the kind word guys and thoughts, it is appreciated.
Cheers, Craig
I've heard from the hospital and they've found space on the ward for Sunday evening, which should massively simplify things compared to schlepping to the middle of Birmingham for rush hour Monday morning (via a lift because I obviously can't drive..!)
So its just a waiting game now really and trying to avoid overthinking/worry as well as trying to recharge battery and be as fresh as possible!
Will be back to update when I know more/am up and about the other side!! Thanks for the kind word guys and thoughts, it is appreciated.
Cheers, Craig
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