Primary Brain Tumor (Glioma)
Discussion
cRaigAl205 said:
Sit rep: considerably more human for a shower and a sleep (in my own bed!). Bit of a muddle/ aphasia, but noticing progress (planning/typing is quicker & easier, if not yet speaking).
Dressing is off, they've worked a number on my lid!!! Chicks dig scars, right!?
Over thinning/bald spots..? 
Doing some initial research on speech & language therapists locally (The irony & instant frustration of the insurance company wanting to speak to me..)
Onwards and upwards!!
Cheers,
Craig
I bet you do. I suppose a scar is a small price to pay isn't it? Dressing is off, they've worked a number on my lid!!! Chicks dig scars, right!?
Over thinning/bald spots..? Doing some initial research on speech & language therapists locally (The irony & instant frustration of the insurance company wanting to speak to me..)
Onwards and upwards!!
Cheers,
Craig
Aside from the speech which will I've no doubt continue to improve,, how do you feel generally?
I'm in tomorrow for a pre op and another MRI scan.
unexpectediteminbaggingarea said:
I bet you do. I suppose a scar is a small price to pay isn't it?
Aside from the speech which will I've no doubt continue to improve,, how do you feel generally?
I'm in tomorrow for a pre op and another MRI scan.
Small fry indeed!! Bouncing back to be fair, trying not to get annoyed with speaking & sounding out! Just having to pace myself, and take the small wins Aside from the speech which will I've no doubt continue to improve,, how do you feel generally?
I'm in tomorrow for a pre op and another MRI scan.
Tapering down with the painkillers/steroids, which is good news, and in less pain as well!
I guess its air..?!Crowd sourcing Q&A (to be fair, I'm in an absolute muddle, and will need to write things down because getting things out is not easy!)
Suggestions for questions appreciated!
I guess the obvious one is "is it cancerous?! Grade 1/2? Can you share the genetic testing/biopsy?
How much did they manage to remove?
Is it fed with a blood feed?
How close to a sensitive/dangerous areas of brain tissue is it?
.. When can I find myself speaking more!? (I guess "it depends" & little and often is the order of the day..!) I suppose I should chase up a referral & research Private speech & language therapy.
Thanks for your help! I'll keep you posted!
Cheers,
Craig
Suggestions for questions appreciated!
I guess the obvious one is "is it cancerous?! Grade 1/2? Can you share the genetic testing/biopsy?
How much did they manage to remove?
Is it fed with a blood feed?
How close to a sensitive/dangerous areas of brain tissue is it?
.. When can I find myself speaking more!? (I guess "it depends" & little and often is the order of the day..!) I suppose I should chase up a referral & research Private speech & language therapy.
Thanks for your help! I'll keep you posted!
Cheers,
Craig
First of all I'm impressed with your recovery and good luck with everything.
The sorts of questions you should be asking, the difficult ones first:
What is the prognosis?
You should be looking for answers on likely recurrence rates and survival rates for someone of your age - with this type of tumour.
Also bearing in mind that these are statistical indicators and individuals have variable outcomes.
What are the prognostic indicators? For example, the grade of tumour and the histology results to define this / the tumour markers used to define grading..
Will there be follow up treatment? For example radio/chemotherapy.
When will there be a follow up, if neither of the above are necessary, and what type of scan will be used to follow up (e.g. MRI / CT scan).
The sorts of questions you should be asking, the difficult ones first:
What is the prognosis?
You should be looking for answers on likely recurrence rates and survival rates for someone of your age - with this type of tumour.
Also bearing in mind that these are statistical indicators and individuals have variable outcomes.
What are the prognostic indicators? For example, the grade of tumour and the histology results to define this / the tumour markers used to define grading..
Will there be follow up treatment? For example radio/chemotherapy.
When will there be a follow up, if neither of the above are necessary, and what type of scan will be used to follow up (e.g. MRI / CT scan).
Anaand pathology results are delayed until the 4th, so we won't be invited up to clinic/review for the MDT till next Thurs (the 6th). Annoyingly they called me and I couldn't ask why..?! Fear not, Dad's on the case..! Fingers crossed I've got more time for rest and recuperation, all being well! I'm trying to take it as a positive that they aren't more panicked...!
Fear not, Dad's on the case..! Fingers crossed I've got more time for rest and recuperation, all being well! I'm trying to take it as a positive that they aren't more panicked...!So, Sit-rep:
Cons:
- Brain surgery has really worked a number on me; I’m effectively mute/quiet and struggling to plan for speech, especially open ended questions and complex statements. Caught in a negative feedback loop insofar as I’ll get frustrated and stop. Concerns I’ll be ‘stuck’ like this for a long time if I’m honest.
-Intermittent tremor and left-side weakness/ discoordination & weakness if I’m being absolutely critical (I’ll triple check on the Consultant regarding a stroke and chase up the physio/occy health!!)
Pros:
- M&S food is absolutely top-drawer (concerns of getting fat are long gone..! and I have the steroids as a proper excuse!!)
- The haircut is bedding in nicely...
- No sign of swelling/infection and scar healing with no drama.
- Clarity of thought/typing coming back (if not speech yet). Observing little & often and positive baby steps which I'm trying to take comfort & encouragement from.
- I’ve been booked in for Monday at the QE for Speech & language therapy, which is super positive. Consultant (and parents, bless them) are advocating hard for me. They have me under the senior doctor/therapist, which is reassuring. I’m going to push hard for training and techniques, and ask them to ‘make’ my parents push (gently) to try and stretch me, all being well.
As you can see, the pros outweigh the cons, so I’m feeling rather chipper to be honest! Good food & rest seems to be the order of the day, and I’ll report back!
Cheers,
Craig
Cons:
- Brain surgery has really worked a number on me; I’m effectively mute/quiet and struggling to plan for speech, especially open ended questions and complex statements. Caught in a negative feedback loop insofar as I’ll get frustrated and stop. Concerns I’ll be ‘stuck’ like this for a long time if I’m honest.
-Intermittent tremor and left-side weakness/ discoordination & weakness if I’m being absolutely critical (I’ll triple check on the Consultant regarding a stroke and chase up the physio/occy health!!)
Pros:
- M&S food is absolutely top-drawer (concerns of getting fat are long gone..! and I have the steroids as a proper excuse!!)
- The haircut is bedding in nicely...
- No sign of swelling/infection and scar healing with no drama.
- Clarity of thought/typing coming back (if not speech yet). Observing little & often and positive baby steps which I'm trying to take comfort & encouragement from.
- I’ve been booked in for Monday at the QE for Speech & language therapy, which is super positive. Consultant (and parents, bless them) are advocating hard for me. They have me under the senior doctor/therapist, which is reassuring. I’m going to push hard for training and techniques, and ask them to ‘make’ my parents push (gently) to try and stretch me, all being well.
As you can see, the pros outweigh the cons, so I’m feeling rather chipper to be honest! Good food & rest seems to be the order of the day, and I’ll report back!
Cheers,
Craig
Edited by cRaigAl205 on Friday 30th June 21:49
Edited by cRaigAl205 on Friday 30th June 22:03
cRaigAl205 said:
So, Sit-rep:
Cons:
- Brain surgery has really worked a number on me; I’m effectively mute/quiet and struggling to plan for speech, especially open ended questions and complex statements. Caught in a negative feedback loop insofar as I’ll get frustrated and stop. Concerns I’ll be ‘stuck’ like this for a long time if I’m honest.
Pros:
- M&S food is absolutely top-drawer (concerns of getting fat are long gone..! and I have the steroids as a proper excuse!!)
- The haircut is bedding in nicely...
- No sign of swelling/infection and scar healing with no drama.
- Clarity of thought/typing coming back (if not speech yet). Observing little & often and positive baby steps which I'm trying to take comfort & encouragement from.
- I’ve been booked in for Monday at the QE for Speech & language therapy, which is super positive. Consultant (and parents, bless them) are advocating hard for me. They have me under the senior doctor/therapist, which is reassuring. I’m going to push hard for training and techniques, and ask them to ‘make’ my parents push (gently) to try and stretch me, all being well.
As you can see, the pros outweigh the cons, so I’m feeling rather chipper to be honest! Good food & rest seems to be the order of the day, and I’ll report back!
Cheers,
Craig
Sounds like you are doing really well.Cons:
- Brain surgery has really worked a number on me; I’m effectively mute/quiet and struggling to plan for speech, especially open ended questions and complex statements. Caught in a negative feedback loop insofar as I’ll get frustrated and stop. Concerns I’ll be ‘stuck’ like this for a long time if I’m honest.
Pros:
- M&S food is absolutely top-drawer (concerns of getting fat are long gone..! and I have the steroids as a proper excuse!!)
- The haircut is bedding in nicely...
- No sign of swelling/infection and scar healing with no drama.
- Clarity of thought/typing coming back (if not speech yet). Observing little & often and positive baby steps which I'm trying to take comfort & encouragement from.
- I’ve been booked in for Monday at the QE for Speech & language therapy, which is super positive. Consultant (and parents, bless them) are advocating hard for me. They have me under the senior doctor/therapist, which is reassuring. I’m going to push hard for training and techniques, and ask them to ‘make’ my parents push (gently) to try and stretch me, all being well.
As you can see, the pros outweigh the cons, so I’m feeling rather chipper to be honest! Good food & rest seems to be the order of the day, and I’ll report back!
Cheers,
Craig
Edited by cRaigAl205 on Friday 30th June 21:49
A friend had a stroke and struggled to get certain words out. It might help if you let people know you don't want them to say the word for you until you tell them. Everyone wants to help but finishing sentences or stating the words he was struggling with added to his frustration.
This can take a long time to come back completely so do focus on the improvements and not the negatives unless it's part of your therapy.
What you are writing makes complete sense so that's a very good sign that your core faculties are in good order.
Hi Craig. I don't think there is anyway to butter it up but you/we all have to remember that this is highly invasive surgery into a very very complex and delicate area. From what it seems like you are doing really well, and I am sure that your struggles will be overcome. Neuroplasticity is a thing, and I am sure that your positive outlook will contribute to a quick recovery
I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
Unreal said:
Sounds like you are doing really well.
A friend had a stroke and struggled to get certain words out. It might help if you let people know you don't want them to say the word for you until you tell them. Everyone wants to help but finishing sentences or stating the words he was struggling with added to his frustration.
This can take a long time to come back completely so do focus on the improvements and not the negatives unless it's part of your therapy.
What you are writing makes complete sense so that's a very good sign that your core faculties are in good order.
Entirely sensible points, so thank you! Appreciate the kind words & observation; I’ll take any positive I can!A friend had a stroke and struggled to get certain words out. It might help if you let people know you don't want them to say the word for you until you tell them. Everyone wants to help but finishing sentences or stating the words he was struggling with added to his frustration.
This can take a long time to come back completely so do focus on the improvements and not the negatives unless it's part of your therapy.
What you are writing makes complete sense so that's a very good sign that your core faculties are in good order.
unexpectediteminbaggingarea said:
Hi Craig. I don't think there is anyway to butter it up but you/we all have to remember that this is highly invasive surgery into a very very complex and delicate area. From what it seems like you are doing really well, and I am sure that your struggles will be overcome. Neuroplasticity is a thing, and I am sure that your positive outlook will contribute to a quick recovery
I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
Fair point and I was suitably warned about this (likely) outcome! I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
Unfortunate (and tedious) on the delay- did they tell you why? Hopefully you can summon enough patience & enthusiasm (like me!) as this is all par for the course! (especially with the NHS..!) Hope the OP comes round soon
Cheers,
Craig
It sounds like you’re making good progress Craig, be a bit patient though. You’re brain has suffered trauma, it’ll take a long time to recover.
From my story: “Although there was nothing physically wrong with me, I had very little control over my arms and legs, my brain needed time to learn how to control everything again. It’s a bit like being out driving, not knowing the area and also not having a map or sat nav; and coming up on a closed road with no detour signs. You just have to learn a different route by trial and error.
My brain had to learn that some instructions couldn’t go down the usual routes to get to the other parts of my brain; it had to figure out a way around the now blocked bit.”
From my story: “Although there was nothing physically wrong with me, I had very little control over my arms and legs, my brain needed time to learn how to control everything again. It’s a bit like being out driving, not knowing the area and also not having a map or sat nav; and coming up on a closed road with no detour signs. You just have to learn a different route by trial and error.
My brain had to learn that some instructions couldn’t go down the usual routes to get to the other parts of my brain; it had to figure out a way around the now blocked bit.”
cRaigAl205 said:
Unreal said:
Sounds like you are doing really well.
A friend had a stroke and struggled to get certain words out. It might help if you let people know you don't want them to say the word for you until you tell them. Everyone wants to help but finishing sentences or stating the words he was struggling with added to his frustration.
This can take a long time to come back completely so do focus on the improvements and not the negatives unless it's part of your therapy.
What you are writing makes complete sense so that's a very good sign that your core faculties are in good order.
Entirely sensible points, so thank you! Appreciate the kind words & observation; I’ll take any positive I can!A friend had a stroke and struggled to get certain words out. It might help if you let people know you don't want them to say the word for you until you tell them. Everyone wants to help but finishing sentences or stating the words he was struggling with added to his frustration.
This can take a long time to come back completely so do focus on the improvements and not the negatives unless it's part of your therapy.
What you are writing makes complete sense so that's a very good sign that your core faculties are in good order.
unexpectediteminbaggingarea said:
Hi Craig. I don't think there is anyway to butter it up but you/we all have to remember that this is highly invasive surgery into a very very complex and delicate area. From what it seems like you are doing really well, and I am sure that your struggles will be overcome. Neuroplasticity is a thing, and I am sure that your positive outlook will contribute to a quick recovery
I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
Fair point and I was suitably warned about this (likely) outcome! I was supposed to be in on Monday but it's been cancelled unfortunately so i am waiting for another date.
Unfortunate (and tedious) on the delay- did they tell you why? Hopefully you can summon enough patience & enthusiasm (like me!) as this is all par for the course! (especially with the NHS..!) Hope the OP comes round soon
Cheers,
Craig
So it's a Grade 2 'pre-cancer' (Out of 4, so not 'bad' as it could be..so I'll take it!) Astrocytoma not Glioma. They are lining up radio & chemo nuking-it combo in Cheltenham, I should hear about an appointment in a couple of weeks they recon (referral via snail mail, I know...! 
), they removed very little of it subject to its size and location as they were worried I would be turned into a vegetable.. (just seen the MRI and its bloody massive! And reasonably deep and central) And given how much I've been rather..buggered up with how little they've taken I'm not surprised!
Ho hum, it is what it is..!
They will hand me over to the radio/oncology team who will review my notes and make a game plan (Kinda feeling like pass a parcel, especially when they get the Welsh GP's involved! Which will likely cover recovery/treatment and prognosis (chemo I'm not looking forward to tbh..!)
Back to waiting I guess!
Cheers,
Craig
), they removed very little of it subject to its size and location as they were worried I would be turned into a vegetable.. (just seen the MRI and its bloody massive! And reasonably deep and central) And given how much I've been rather..buggered up with how little they've taken I'm not surprised!Ho hum, it is what it is..!
They will hand me over to the radio/oncology team who will review my notes and make a game plan (Kinda feeling like pass a parcel, especially when they get the Welsh GP's involved! Which will likely cover recovery/treatment and prognosis (chemo I'm not looking forward to tbh..!)
Back to waiting I guess!
Cheers,
Craig
Long time lurker on the forums but this subject has finally persuaded me to register as I was diagnosed March 2022 with a brain tumour and have been through surgery, radio and chemo therapy so feel able to contribute. I’m now receiving a personalised vaccine in Germany (UK resident) to try and prevent any recurrence. My diagnosis is Grade 4 Astrocytoma, methylated, IDH mutant, not the best to have, but not the worst either.
Craig - so sorry to read that you’ve joined the club, however, I’m happy to share my own experiences with you. I’m also under the care of Cheltenham oncology team and have nothing but praise for them. The two neuro CNS are brilliant and will support you through your treatment, as are the Drs.
A few key thoughts from my journey and how i’ve managed the situation:
- do a level of exercise that gets you out of the house and gives you something else to focus on.
- find people who you’re really comfortable talking with and just chat with them. Do not bottle up your concerns and worries. Also be open and honest with people, if you’re feeling pants, tell them.
- maintain a social life so your friends/colleagues/family, can gauge how you’re doing. They’ll likely be afraid to talk to you directly about your diagnosis and treatment.
- set some personal targets or milestones and try and book something to do each month so you have something to look forward to. My milestones were to improve my 5k times (am still slow, just not as slow!).
- radio and chemo therapy make you feel rough, I had concussion for 4 months post surgery. Be aware of this and plan accordingly, it improves pretty quickly.
- if you can, try and keep working, probably on reduced hours, but it’ll give you purpose to your day.
- don’t wallow in self pity and concern, it makes things a lot worse. You’ve a long, but very manageable, journey ahead of you.
Am happy to answer any questions and share my experiences from the past year or so. Not being able to drive has been my greatest inconvenience!
Craig - so sorry to read that you’ve joined the club, however, I’m happy to share my own experiences with you. I’m also under the care of Cheltenham oncology team and have nothing but praise for them. The two neuro CNS are brilliant and will support you through your treatment, as are the Drs.
A few key thoughts from my journey and how i’ve managed the situation:
- do a level of exercise that gets you out of the house and gives you something else to focus on.
- find people who you’re really comfortable talking with and just chat with them. Do not bottle up your concerns and worries. Also be open and honest with people, if you’re feeling pants, tell them.
- maintain a social life so your friends/colleagues/family, can gauge how you’re doing. They’ll likely be afraid to talk to you directly about your diagnosis and treatment.
- set some personal targets or milestones and try and book something to do each month so you have something to look forward to. My milestones were to improve my 5k times (am still slow, just not as slow!).
- radio and chemo therapy make you feel rough, I had concussion for 4 months post surgery. Be aware of this and plan accordingly, it improves pretty quickly.
- if you can, try and keep working, probably on reduced hours, but it’ll give you purpose to your day.
- don’t wallow in self pity and concern, it makes things a lot worse. You’ve a long, but very manageable, journey ahead of you.
Am happy to answer any questions and share my experiences from the past year or so. Not being able to drive has been my greatest inconvenience!
Edited by Je ne sais pas on Saturday 8th July 13:12
Craig - sounds like you’re doing brilliantly!
My main post surgery and treatment symptoms were fatigue, forgetfulness and struggling with finding the correct words, tinnitus and odd muscle spasms. These have all improved over time, your brain has been through significant trauma and needs time to repair.
You sound like a very positive person and that will definitely help you on the road to recovery.
My main post surgery and treatment symptoms were fatigue, forgetfulness and struggling with finding the correct words, tinnitus and odd muscle spasms. These have all improved over time, your brain has been through significant trauma and needs time to repair.
You sound like a very positive person and that will definitely help you on the road to recovery.
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