Primary Brain Tumor (Glioma)
Discussion
Unreal said:
Right, controversial input incoming.
When my father was being treated he was struggling with a number of side effects. His Macmillan nurse (and these people are angels) went through his drugs and organised a number of changes. Some of the new ones were more expensive and the implication was that there are a number of defaults which also happen to be the cheapest.
So, if you haven't engaged with Macmillan or Marie Curie I would strongly encourage you to do so. Not just for the medical input but because of their vast experience at dealing with the emotional, physical and mental issues which can surround the illness. It isn't a sign of weakness - it's simply making use of all the resources that are available to you and they represent one of the most valuable that you can access. You'd do that in your profession so do it for yourself.
I don't think that's a controversial view at all- I'll take whatever help is going! As I mentioned, the parents have been great at advocating for me, plus the resources of Maggies & Macmillian have certainly been invaluable (I currently have two Macmillan specialist nurses assigned to my case, who are really fantastic); they are very adept at greasing the wheels and pushing when needed, particularly when things don't quite join up as they should.. When my father was being treated he was struggling with a number of side effects. His Macmillan nurse (and these people are angels) went through his drugs and organised a number of changes. Some of the new ones were more expensive and the implication was that there are a number of defaults which also happen to be the cheapest.
So, if you haven't engaged with Macmillan or Marie Curie I would strongly encourage you to do so. Not just for the medical input but because of their vast experience at dealing with the emotional, physical and mental issues which can surround the illness. It isn't a sign of weakness - it's simply making use of all the resources that are available to you and they represent one of the most valuable that you can access. You'd do that in your profession so do it for yourself.
And also explaining things in a bit more of a clear/"human" fashion than some of the consultants/specialists. Ironically it's just occurred to me, that after a quiet sit down, a Lucozade and a few choccy biscuits I now actually feel absolutely fine in myself, no tiredness or fatigue, headache has gone etc... So seems about right tomorrow I'm going back on the road to feeling like s
t warmed up most likely... 
Well, I've carefully been through all of the various boxes of tablets, have given them all a letter marking them and made a list of the timings/sequence for the morning. Wish me luck!!
Edited by cRaigAl205 on Thursday 26th October 19:08
cRaigAl205 said:
Unreal said:
Right, controversial input incoming.
When my father was being treated he was struggling with a number of side effects. His Macmillan nurse (and these people are angels) went through his drugs and organised a number of changes. Some of the new ones were more expensive and the implication was that there are a number of defaults which also happen to be the cheapest.
So, if you haven't engaged with Macmillan or Marie Curie I would strongly encourage you to do so. Not just for the medical input but because of their vast experience at dealing with the emotional, physical and mental issues which can surround the illness. It isn't a sign of weakness - it's simply making use of all the resources that are available to you and they represent one of the most valuable that you can access. You'd do that in your profession so do it for yourself.
I don't think that's a controversial view at all- I'll take whatever help is going! As I mentioned, the parents have been great at advocating for me, plus the resources of Maggies & Macmillian have certainly been invaluable (I currently have two Macmillan specialist nurses assigned to my case, who are really fantastic); they are very adept at greasing the wheels and pushing when needed, particularly when things don't quite join up as they should.. When my father was being treated he was struggling with a number of side effects. His Macmillan nurse (and these people are angels) went through his drugs and organised a number of changes. Some of the new ones were more expensive and the implication was that there are a number of defaults which also happen to be the cheapest.
So, if you haven't engaged with Macmillan or Marie Curie I would strongly encourage you to do so. Not just for the medical input but because of their vast experience at dealing with the emotional, physical and mental issues which can surround the illness. It isn't a sign of weakness - it's simply making use of all the resources that are available to you and they represent one of the most valuable that you can access. You'd do that in your profession so do it for yourself.
And also explaining things in a bit more of a clear/"human" fashion than some of the consultants/specialists. Ironically it's just occurred to me, that after a quiet sit down, a Lucozade and a few choccy biscuits I now actually feel absolutely fine in myself, no tiredness or fatigue, headache has gone etc... So seems about right tomorrow I'm going back on the road to feeling like s
t warmed up most likely... Well, I've carefully been through all of the various boxes of tablets, have given them all a letter marking them and made a list of the timings/sequence for the morning. Wish me luck!!
Edited by cRaigAl205 on Thursday 26th October 19:08
Well, not to tempt fate, but the first day has been pretty uneventful, with no real side effects to talk about. I've just had a quiet day pottering which has probably helped. I still have low expectations and am bracing myself for an upcoming st storm in all honesty, but I figure after the various side effects so far that's probably the right way to approach it! (the pessimist is always pleasantly surprised or proved right, win win! 
)
Cheers,
Craig
t storm in all honesty, but I figure after the various side effects so far that's probably the right way to approach it! (the pessimist is always pleasantly surprised or proved right, win win! )unexpectediteminbaggingarea said:
Hi craig, I took a holiday from this thread as it’s yours not mine. But as a little update I’m a little behind you. Op happened on 21 July and I am half way through radio. Just started losing my hair in the localized area where it’s being blasted. There has been a lot to digest as I’m sure there has been with you. I wish you all the best over the coming weeks with the start of chemo. I’ll check back in a few months. Best wishes.
Hows it going by the way? Radio finished up? I was going to drop you a PM/email to check in, but I can't unfortunately! Thinking of you, either way Cheers,
Craig
Just up to 21 tablets every day.... 
I'm certainly better at swallowing the tablets these days (needs must and all that..
) but the volume of water required to get them down the hatch is still a struggle in all honesty!!
No specific side-effects so far, just a general increasing sense of malaise, which is... currently tolerable.. fingers crossed it remains so..(oh, plus my eyebrows seem to be 'thinning' (falling out...)
I'm certainly better at swallowing the tablets these days (needs must and all that..
) but the volume of water required to get them down the hatch is still a struggle in all honesty!!No specific side-effects so far, just a general increasing sense of malaise, which is... currently tolerable.. fingers crossed it remains so..(oh, plus my eyebrows seem to be 'thinning' (falling out...)
Edited by cRaigAl205 on Monday 30th October 17:40
Getting a bit tired and stty, but no real complaints..
..other than a lack of appetite, a bit of nausea, but I am losing weight, which is a good result after the steroid related weight gain. Tinnitus (and my hearing is certainly worse, as is my eyesight), more hair is falling out, skin is a bit papery & still have a spotty rash, I seem to have developed quite an aggressive tremor which in addition to being very frustrating, hinders quite a lot of pottering/light DIY. In addition, I can generally manage about 30mins of minor activity followed by a minimum of an hour back in bed to recover from the fatigue... But as I say, other than that.. no complaints..!
Tablet chemo treatment kicks off again next Tuesday (21st), so I'm quietly hopeful that a bit more R&R without any chemical warfare may do me good..
Right, rant over..!!
Cheers, Craig
tty, but no real complaints....other than a lack of appetite, a bit of nausea, but I am losing weight, which is a good result after the steroid related weight gain. Tinnitus (and my hearing is certainly worse, as is my eyesight), more hair is falling out, skin is a bit papery & still have a spotty rash, I seem to have developed quite an aggressive tremor which in addition to being very frustrating, hinders quite a lot of pottering/light DIY. In addition, I can generally manage about 30mins of minor activity followed by a minimum of an hour back in bed to recover from the fatigue... But as I say, other than that.. no complaints..!
Tablet chemo treatment kicks off again next Tuesday (21st), so I'm quietly hopeful that a bit more R&R without any chemical warfare may do me good..
Right, rant over..!!
Cheers, Craig
cRaigAl205 said:
Getting a bit tired and stty, but no real complaints..
..other than a lack of appetite, a bit of nausea, but I am losing weight, which is a good result after the steroid related weight gain. Tinnitus (and my hearing is certainly worse, as is my eyesight), more hair is falling out, skin is a bit papery & still have a spotty rash, I seem to have developed quite an aggressive tremor which in addition to being very frustrating, hinders quite a lot of pottering/light DIY. In addition, I can generally manage about 30mins of minor activity followed by a minimum of an hour back in bed to recover from the fatigue... But as I say, other than that.. no complaints..!
Tablet chemo treatment kicks off again next Tuesday (21st), so I'm quietly hopeful that a bit more R&R without any chemical warfare may do me good..
Right, rant over..!!
Cheers, Craig
Good luck with it all! tty, but no real complaints....other than a lack of appetite, a bit of nausea, but I am losing weight, which is a good result after the steroid related weight gain. Tinnitus (and my hearing is certainly worse, as is my eyesight), more hair is falling out, skin is a bit papery & still have a spotty rash, I seem to have developed quite an aggressive tremor which in addition to being very frustrating, hinders quite a lot of pottering/light DIY. In addition, I can generally manage about 30mins of minor activity followed by a minimum of an hour back in bed to recover from the fatigue... But as I say, other than that.. no complaints..!
Tablet chemo treatment kicks off again next Tuesday (21st), so I'm quietly hopeful that a bit more R&R without any chemical warfare may do me good..
Right, rant over..!!
Cheers, Craig
Good luck Craig, Mrs FF was diagnosed with a likely adamantinomatous craniopharyngioma and had it resected yesterday. Not a total removal so radiotherapy to follow and likely years of side effects ahead as it affects pituitary and hypothalamic functions. Still, it could've been a lot worse.
Best wishes, FF
Best wishes, FF
Well, I've made it to Christmas! Breakfast was lovely....! I mean, who doesn't like something 'Cytotoxic' that you cant actually handle and needs to be nil-by-mouth either side..!
I'm now in the midst of Chemotherapy, which, as mentioned, is fortunately via tablet so I can have it in in the (dis)comfort of my own home, and can avoid shuttling an hour each way to Cheltenham, which to be honest, I suspect tired me out more or at least as much as the actual treatment.
So I had a festive brunch of quite a lot of tablets.. (I'm now up to 28 per day...!!) 3 tablets are actually for the cancer treatment, the rest are 'support' medications to counteract the side effects. Fortunately its essentially 5 days on chemo, followed by the rest of the month for recovery, my pre-Christmas stock-take certainly took me a little while to get my head around! But as I ran out of the anti-nausea meds last round, and decided to 'risk it'... I absolutely won't be making that mistake again...! 
Unfortunately I had another seizure a couple of weeks ago, further complicated because I was on my own, but fortunately I had a few moments before where I realised what was going to happen so was basically sitting on the floor before it dropped me. I didn't lose consciousness, and it resolved itself after 5/10mins and fortunately it wasn't anywhere near as exhausting as the last two. So they've upped the steroids and added yet another drug to hopefully prevent any more.
FYI- this is I reckon about half the meds I've taken since this all kicked off... As the parents have done what they can when I wasn't really with it and just chucked the foils away (I'm big into recycling...!)
Blood tests for white blood cell counts are still good enough to continue, I've got a kidney function test booked in as well as another MRI with contrast scan to get an update/current check on swelling and draw a definitive line in the sand to compare 'after treatment' to, plus an Epilepsy consultation with the Specialist team. The NHS 'system' seems to be kicking in, I thought I had ended up on their Christmas card list when this lot arrived! Impressively the MRI is up and running on New Years Eve!
In other good news, my hair seems to be growing back reasonably evenly and consistently. I'll probably continue clippering it off until the end of chemo, but I thought I'd test-check progress over the Christmas break.
And not to tempt fate... but I do feel like I've turned a corner side effect-wise. I really don't know why Chemotherapy has the reputation for being awful, frankly I'd choose it every-time over Radiotherapy, which made me feel like st warmed up!! I guess it makes a difference where they are aiming it, I guess the brain is slightly less than ideal!!
Merry Christmas to you and yours, I'll be back with more updates (moaning..!) in the New Year!
Cheers,
Craig
Breakfast was lovely....! I mean, who doesn't like something 'Cytotoxic' that you cant actually handle and needs to be nil-by-mouth either side..! I'm now in the midst of Chemotherapy, which, as mentioned, is fortunately via tablet so I can have it in in the (dis)comfort of my own home, and can avoid shuttling an hour each way to Cheltenham, which to be honest, I suspect tired me out more or at least as much as the actual treatment.
So I had a festive brunch of quite a lot of tablets.. (I'm now up to 28 per day...!!) 3 tablets are actually for the cancer treatment, the rest are 'support' medications to counteract the side effects. Fortunately its essentially 5 days on chemo, followed by the rest of the month for recovery, my pre-Christmas stock-take certainly took me a little while to get my head around!
But as I ran out of the anti-nausea meds last round, and decided to 'risk it'... I absolutely won't be making that mistake again...! Unfortunately I had another seizure a couple of weeks ago, further complicated because I was on my own, but fortunately I had a few moments before where I realised what was going to happen so was basically sitting on the floor before it dropped me. I didn't lose consciousness, and it resolved itself after 5/10mins and fortunately it wasn't anywhere near as exhausting as the last two. So they've upped the steroids and added yet another drug to hopefully prevent any more.
FYI- this is I reckon about half the meds I've taken since this all kicked off... As the parents have done what they can when I wasn't really with it and just chucked the foils away (I'm big into recycling...!)
Blood tests for white blood cell counts are still good enough to continue, I've got a kidney function test booked in as well as another MRI with contrast scan to get an update/current check on swelling and draw a definitive line in the sand to compare 'after treatment' to, plus an Epilepsy consultation with the Specialist team. The NHS 'system' seems to be kicking in, I thought I had ended up on their Christmas card list when this lot arrived!
Impressively the MRI is up and running on New Years Eve!In other good news, my hair seems to be growing back reasonably evenly and consistently. I'll probably continue clippering it off until the end of chemo, but I thought I'd test-check progress over the Christmas break.
And not to tempt fate... but I do feel like I've turned a corner side effect-wise. I really don't know why Chemotherapy has the reputation for being awful, frankly I'd choose it every-time over Radiotherapy, which made me feel like s
t warmed up!! I guess it makes a difference where they are aiming it, I guess the brain is slightly less than ideal!!Merry Christmas to you and yours, I'll be back with more updates (moaning..!) in the New Year!
Cheers,
Craig
cRaigAl205 said:
Well, I've made it to Christmas!
Brilliant. A mate of mine, been friends for over 50 years, has terminal cancer, and today is enjoying his 3rd "last Christmas". He messaged me today wishing me a merry Christmas, adding that this will definitely be his last (which the way things are going, is probably true).I replied saying "f
k off, you keep saying this but you fail to deliver. You've done last Christmas more often than Wham!"Got a laughing emoji back.
TwigtheWonderkid said:
Brilliant. A mate of mine, been friends for over 50 years, has terminal cancer, and today is enjoying his 3rd "last Christmas". He messaged me today wishing me a merry Christmas, adding that this will definitely be his last (which the way things are going, is probably true).
I replied saying "fk off, you keep saying this but you fail to deliver. You've done last Christmas more often than Wham!"
Got a laughing emoji back.
Fantastic! I replied saying "f
k off, you keep saying this but you fail to deliver. You've done last Christmas more often than Wham!"Got a laughing emoji back.
Cheers guys, the support is appreciated!
Well, a smidgen of positive news from my Oncology Nurse, the MRI scan results are back and written up (considering it took place on NYE, I'm kinda amazed..! ) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.
Cheers,
Craig
) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.Cheers,
Craig
cRaigAl205 said:
Well, a smidgen of positive news from my Oncology Nurse, the MRI scan results are back and written up (considering it took place on NYE, I'm kinda amazed..! ) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.
Cheers,
Craig
Happy New Year to you Craig. Let's hope 2024 brings you continued improvement. You're spirit is fantastic and quite humbling. Fingers crossed the meeting with the consultant goes well.) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.Cheers,
Craig
cRaigAl205 said:
Well, a smidgen of positive news from my Oncology Nurse, the MRI scan results are back and written up (considering it took place on NYE, I'm kinda amazed..! ) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.
Cheers,
Craig
Happy New Year to you Craig - Here is hoping for Trevor's continued decline throughout 2024!) but while the nurse didn't feel qualified to comment or read any of the report out to me, she thought we'd want to know that the Consultant is pleased with progress and Trevor (the tumour..) seems to be on the decline.. We are speaking to the Consultant in mid Jan so not long to wait. I'm obviously trying not to get carried away and working on managing my expectations, but not long until I hear it from the horses' mouth and we will run through the scan results/prognosis.Cheers,
Craig
Gassing Station | Health Matters | Top of Page | What's New | My Stuff