Primary Brain Tumor (Glioma)
Discussion
A bit of a side project (I know.... just what I need right..!? 
)
Unsure how familiar you guys are with Radiotherapy masks, but essentially they are looking to position you exactly in the same place each and every time and understandably they can't rely on facial features as frames of reference (other cancer treatment, breast, for example get a small marking tattoos to line up with the positioning laser), as they are obviously looking to target just the cancerous cells and not nuke any more healthy matter than they absolutely have to..
So first you get the mask molded to your face (moderately unpleasant) then every day essentially pinned down by the face to the Linear Accelerator table (very unpleasant..) But needs must and all that.. I suspect that's probably the closest I'll get to sitting in/on circa £2million of equipment...!! (and they have 5 of them..!)
The mask is so tight and restrictive, that you cant even comfortably blink or really open your eyes, but you do sorta get used to it, and its much quieter than the MRI machine so if you relax you can almost doze off, plus in and out in 5 mins (or 10 with a positioning scan).
www.macmillan.org.uk/cancer-information-and-suppor...
(IMO She looks far too happy given what she's just been through and what's frankly still to come..!)
At the end of the course, they offer you the mask (some people "ring the bell"- I did not....
) but I did take the mask with me as a 'memento'.
But I've had a bit of a play and got my eye back in with a little light DIY.. (Fortunately you can't quite tell how much weight via the mask I've put on- Steroids also cause 'moon face' apparently....!)
If in doubt... paint it copper..!
Fortunately the corner of my living room already had a copper down-lighter so I stuck a smart colour changing LED bulb and just leave it switched on and control it via the (pretty intuitive) app.
https://youtube.com/shorts/r1rPvljfTmo
You obviously don't have to aim for brothel colours, but showing the range!
https://youtube.com/shorts/dW9uVtb3Dyo
Quite pleased with the outcome, I mean, you've gotta "own" this 'experience', right..!?
I may have got a bit carried away.... but in my defence they were 12quid down to circa 2! (I assume they are being wound down so stocking up seemed like a good idea!)
Onwards and upwards!
Cheers,
Craig
) Unsure how familiar you guys are with Radiotherapy masks, but essentially they are looking to position you exactly in the same place each and every time and understandably they can't rely on facial features as frames of reference (other cancer treatment, breast, for example get a small marking tattoos to line up with the positioning laser), as they are obviously looking to target just the cancerous cells and not nuke any more healthy matter than they absolutely have to..
So first you get the mask molded to your face (moderately unpleasant) then every day essentially pinned down by the face to the Linear Accelerator table (very unpleasant..) But needs must and all that.. I suspect that's probably the closest I'll get to sitting in/on circa £2million of equipment...!! (and they have 5 of them..!)
The mask is so tight and restrictive, that you cant even comfortably blink or really open your eyes, but you do sorta get used to it, and its much quieter than the MRI machine so if you relax you can almost doze off, plus in and out in 5 mins (or 10 with a positioning scan).
www.macmillan.org.uk/cancer-information-and-suppor...
(IMO She looks far too happy given what she's just been through and what's frankly still to come..!)
At the end of the course, they offer you the mask (some people "ring the bell"- I did not....
) but I did take the mask with me as a 'memento'.But I've had a bit of a play and got my eye back in with a little light DIY.. (Fortunately you can't quite tell how much weight via the mask I've put on- Steroids also cause 'moon face' apparently....!)
If in doubt... paint it copper..!
Fortunately the corner of my living room already had a copper down-lighter so I stuck a smart colour changing LED bulb and just leave it switched on and control it via the (pretty intuitive) app.
https://youtube.com/shorts/r1rPvljfTmo
You obviously don't have to aim for brothel colours, but showing the range!
https://youtube.com/shorts/dW9uVtb3Dyo
Quite pleased with the outcome, I mean, you've gotta "own" this 'experience', right..!?
I may have got a bit carried away.... but in my defence they were 12quid down to circa 2! (I assume they are being wound down so stocking up seemed like a good idea!)
Onwards and upwards!
Cheers,
Craig
Hey Craig hope you are doing ok. Loving the mask. I think mine is in a cupboard somewhere. I think since last time I checked in I've had 6 weeks of radiotherapy. Gone bald. Grown my hair back. Currently between rounds 3&4 of the temzol tablets. I had a couple of very odd happenings post radio which seem to have f
ked off thank god as they were not idea. Onwards we go. Side effect of the tablets are strange and variable. Fatigue, nausea, dizziness. They were dreadful after round 2 but after round 3 they were more manageable and no way near as bad. Day to day is normal pretty much. The no driving thing is becoming a little bit of a bind now, but this could all be worse, I'm thankful to be able to write this.
Best wishes.
ked off thank god as they were not idea. Onwards we go. Side effect of the tablets are strange and variable. Fatigue, nausea, dizziness. They were dreadful after round 2 but after round 3 they were more manageable and no way near as bad. Day to day is normal pretty much. The no driving thing is becoming a little bit of a bind now, but this could all be worse, I'm thankful to be able to write this. Best wishes.
I've been following this thread and rooting for you to get better, hopefully it's currently a case of 'No news is good news'?
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Edited by Tango13 on Sunday 4th February 21:05
Tango13 said:
I've been following this thread and rooting for you to get better, hopefully it's currently a case of 'No news is good news'?
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
A rush of blood to the head? One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Edited by Tango13 on Sunday 4th February 21:05
[ February 21:05[/footnote]'ve been following this thread and rooting for you to get better, hopefully it's currently a case of 'No news is good news
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Silence of the lambs?! Reminds of a a gurney...
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Silence of the lambs?! Reminds of a a gurney...
Edited CraigAl205 on Sunday
cRaigAl205 said:
Tango13 said:
I've been following this thread and rooting for you to get better, hopefully it's currently a case of 'No news is good news
One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Silence of the lambs?! Reminds of a a gurney...One thing that's slightly bugging me is your mask reminds me of an album cover but I'm buggered if I can think of the album
Edited CraigAl205 on Sunday
Well, apparently its brain tumour awareness month, of which I am acutely aware from the frankly God awful side effects of the tumour (ironic that the 'treatment'/ "cure" side effects is exponentially much, much worse than the symptoms of the tumour (headaches, eye pressure & seizures) but I mustn't grumble as I presume dying of a brain tumour is much worse...
I've had the Molecular Pathology report from the latest (and slowest) MRI scan but as I have next to no medical experience I'll end up Googling it and presumably I'll be warned I'll be dead before I finish the sentence on WebMD...
Looking forward to the MRI scan imagery (both before & after) but the consultant is making positive noises so that's good..
Oh, don't forget to light a candle.
I would light one but as I have a brain injury I'll likely burn the house down... #beaware....... https://www.thebraintumourcharity.org/brain-tumour...
I've had the Molecular Pathology report from the latest (and slowest) MRI scan but as I have next to no medical experience I'll end up Googling it and presumably I'll be warned I'll be dead before I finish the sentence on WebMD...
Looking forward to the MRI scan imagery (both before & after) but the consultant is making positive noises so that's good..
Oh, don't forget to light a candle.
I would light one but as I have a brain injury I'll likely burn the house down...
#beaware....... https://www.thebraintumourcharity.org/brain-tumour...
Well, feels like its been long enough for an update: spoiler alert, I'm still here, vaguely with it, and avoiding being poisioned by the 'cytotoxic' Temozolomide tablets. over halfway through the planned course, I'm on session 7 of a targeted course of 12, but anything over 6 is a bonus apparently. Minor setback last time- my platelet count had fallen quite sharply in the month prior- I think an average is 150,000 platelets per microL, mine was down to 90k. Risks include bruising to cuts not clotting and worst case bleeds on the brain, but thats when your count gets down to 10-20k. So my bone marrow is apparently quite resillient and bounced back pretty well.
So it was pushed back a week and I spent most of the week consuming 'green' things, such as mange tous, spinach, petit pois and drinking shedloads of water (typically have to get up at least twice in the night now...), but it did work, and it was back up to 210k in a smidge under a week so mid way through the next round now and *touch wood* no noticable/significant side effects from the chemo, if given the choice I'd absolutely choose tablet chemo over radiotherapy, but I suppose the consultants pick the most appropriate application method to suit each cancer in question.
Anyway, after filling in a 'Subject Access Request', which sounds very official, I was sent my first MRIs, so I'm pleased to introduce Trevor (the tumour)!
He's quite a big lad, as you can see, so I understand why they didnt even attempt to remove more of it surgically. I'm still recovering from impediments I recieved during the surgery, and they only removed a small percentage, and enough for the samples for histology, I think if they'd hacked much more out I'd be even more of a vegetable than I am now.... But its obviously concerning that its going to be in my head the rest of my life, even if it inert and could potentially spring back to life and transmute into a more aggressive form of tumour, mine is a Grade 2, but as its so large there is more chance that it could transform into a Grade 3 or 4, which obviously can dramatically impact life expectancy..
The report that accompanied the results didnt really contain any nasty surprises that I wasnt already aware of, Although some parts did make me chuckle:
"A pot labelled brain". I guess with desciptive skills like that, thats why they are paid the big bucks..
This also gave me a bigger laugh, maybe its just my dark sense of humour, but unsure if I mentioned it at the time, as both chemo & radio are designed to destroy/damage fast replicating cells, there is obviously a risk that my fertility could be 'impacted', so it was recommened a preserve a 'sample' in their cryo sperm bank. I was then recently sent this. Of all the things I've been asked to review over the years, this takes the biscuit!
I mean.... am I judging it on ambiance? Entertainment? Quality of printed materials available..? I despair..
d) IF!?!? Nah just did it in the corridor mate..
For those curious, it was just a disabled W.C off a consultancy/side room, usual NHS depressing ambience
But other than that it's just like Groundhog day- just muddling through, as the chiche goes, 'taking it one day at a time...'
'Over and (but hopefully not) 'Out'
So it was pushed back a week and I spent most of the week consuming 'green' things, such as mange tous, spinach, petit pois and drinking shedloads of water (typically have to get up at least twice in the night now...
), but it did work, and it was back up to 210k in a smidge under a week so mid way through the next round now and *touch wood* no noticable/significant side effects from the chemo, if given the choice I'd absolutely choose tablet chemo over radiotherapy, but I suppose the consultants pick the most appropriate application method to suit each cancer in question. Anyway, after filling in a 'Subject Access Request', which sounds very official, I was sent my first MRIs, so I'm pleased to introduce Trevor (the tumour)!
He's quite a big lad, as you can see, so I understand why they didnt even attempt to remove more of it surgically. I'm still recovering from impediments I recieved during the surgery, and they only removed a small percentage, and enough for the samples for histology, I think if they'd hacked much more out I'd be even more of a vegetable than I am now.... But its obviously concerning that its going to be in my head the rest of my life, even if it inert and could potentially spring back to life and transmute into a more aggressive form of tumour, mine is a Grade 2, but as its so large there is more chance that it could transform into a Grade 3 or 4, which obviously can dramatically impact life expectancy..
The report that accompanied the results didnt really contain any nasty surprises that I wasnt already aware of, Although some parts did make me chuckle:
"A pot labelled brain". I guess with desciptive skills like that, thats why they are paid the big bucks..
This also gave me a bigger laugh, maybe its just my dark sense of humour, but unsure if I mentioned it at the time, as both chemo & radio are designed to destroy/damage fast replicating cells, there is obviously a risk that my fertility could be 'impacted', so it was recommened a preserve a 'sample' in their cryo sperm bank. I was then recently sent this. Of all the things I've been asked to review over the years, this takes the biscuit!
I mean.... am I judging it on ambiance? Entertainment? Quality of printed materials available..? I despair..
d) IF!?!? Nah just did it in the corridor mate..
For those curious, it was just a disabled W.C off a consultancy/side room, usual NHS depressing ambience
But other than that it's just like Groundhog day- just muddling through, as the chiche goes, 'taking it one day at a time...'
'Over and (but hopefully not) 'Out'
I had a radiotherapy mask for my mouth tumour treatment. I also had a small tattoo on my chest so they could position their instruments accurately. When my radio was finished they gave me the mask, which I chucked in the bin on the way out. Don't make friends with your tumour, kill the fker. Maybe you're being extra canny and taking the 'get to know your enemy' approach.
As ever - best of luck mate.
ker. Maybe you're being extra canny and taking the 'get to know your enemy' approach. As ever - best of luck mate.
Good luck mate and thanks for posting what you did with the mask! I have no idea what to do with mine, which is residing in a dusty part of my barn where we dump trash. I thought about doing something with it like you did, but I have no wish to ever see it again! Agree with all your points about the claustrophobic nature of wearing it - when I was strapped down I used to do my aircraft checks in my head which took my mind off the damn thing!
I think I might burn the f****** thing this weekend
I think I might burn the f****** thing this weekend
Siko said:
Good luck mate and thanks for posting what you did with the mask! I have no idea what to do with mine, which is residing in a dusty part of my barn where we dump trash. I thought about doing something with it like you did, but I have no wish to ever see it again! Agree with all your points about the claustrophobic nature of wearing it - when I was strapped down I used to do my aircraft checks in my head which took my mind off the damn thing!
I think I might burn the f****** thing this weekend
I've heard a lot of different approaches to destroy it: from beating the sI think I might burn the f****** thing this weekend
t out of it with a baseball bat, blowing it up, or even shooting it with a shotgun!I spoke to an elderly gent in the village here, he was so claustrophobic they had to sedate him the first time! But they then offered to cut eye and mouth holes in it- if they can do it for one offs- why arent we all offered that option?!
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