Primary Brain Tumor (Glioma)
Discussion
cRaigAl205 said:
My understanding is that treatment in the US is..... expensive 
As tempting as a Gofundme is, I'm more minded to try my 'sob story' with someone like CarSOS to pull my finger out and help get my 205 GTi finished and back on the road...!
You Sir, are a true PH'er if ever I saw one As tempting as a Gofundme is, I'm more minded to try my 'sob story' with someone like CarSOS to pull my finger out and help get my 205 GTi finished and back on the road...!
Speckle said:
You Sir, are a true PH'er if ever I saw one
Well, I try..! 
Well.. good news: The radiotherapy is over at last! It was pretty miserable towards the end. In all honesty the side effects certainly built up - they certainly mentioned the fatigue, but not that it could hit me like a bus! And as for the mental fog/confusion... It either felt like early onset dementia or that I'd had a lobotomy...!
They've said it could be a couple of weeks before the side-effects peak, but fortunately I have a 4 week break before the chemo starts to recover. And I'm seeing the consultant in a couple of weeks to firm up the plan for the chemo & timing intervals.It was also nice to have nothing to do and all day to do it! The hour's journey each way for less than 10mins of being zapped did get both tedious & tiring but no real complaints in the grand scheme of things.
I'm very much looking forward (as much as you can...) to having outpatient chemo via tablet. So at least I can feel miserable in the comfort of my own home, and save circa 2 hours a day of traveling!
Bad news... I've checked and a) you cant put forward your own car for CarSOS (or apparently set someone else up to do it for you....! b) if they've already featured the same make/model you are unlikely to get picked (Series 6, D'oh!!), so that's off the cards!!
Sit Rep: still feeling like s
t, but without the added distraction of a trip out to be irradiated everyday.. In all honesty, while tiring (and tedious..) I actually ironically miss the structure the routine provided, I'm now 'stuck' at home with just my thoughts while feeling a bit crap, I keep thinking the side effects have peaked, but I think I'm being somewhat optimistic unfortunately.. I can manage a brief bit of 'pottering', followed by a sit or lie down, which is... tedious. As for work, I've volunteered to help out on a couple of my old projects, and in all honesty, its not coming back easily, which is obviously a bit.. concerning.
While I don't regret the treatment, obviously, I'm still trying to get my head around a 'cure' which is objectively worse than any of the presenting symptoms of the disease I'd actually had (I'm sure dying of a brain tumor or having a seizure while driving would have changed my tune, for example..) but I cant help wondering if I'm essentially going to be left with a substantial lump in my head (they've already said they cant operate to remove any more (and they only got a fraction out the first time due to its size/mass/integration with bits of the brain I apparently need..) which they wont definitively know if they've successfully killed off, we are then into a monitoring exercise, which is obviously reactive, rather than proactive, so basically a waiting game for me.
Brain tumors, overrated, right...?
t, but without the added distraction of a trip out to be irradiated everyday.. In all honesty, while tiring (and tedious..) I actually ironically miss the structure the routine provided, I'm now 'stuck' at home with just my thoughts while feeling a bit crap, I keep thinking the side effects have peaked, but I think I'm being somewhat optimistic unfortunately.. I can manage a brief bit of 'pottering', followed by a sit or lie down, which is... tedious. As for work, I've volunteered to help out on a couple of my old projects, and in all honesty, its not coming back easily, which is obviously a bit.. concerning. While I don't regret the treatment, obviously, I'm still trying to get my head around a 'cure' which is objectively worse than any of the presenting symptoms of the disease I'd actually had (I'm sure dying of a brain tumor or having a seizure while driving would have changed my tune, for example..) but I cant help wondering if I'm essentially going to be left with a substantial lump in my head (they've already said they cant operate to remove any more (and they only got a fraction out the first time due to its size/mass/integration with bits of the brain I apparently need..) which they wont definitively know if they've successfully killed off, we are then into a monitoring exercise, which is obviously reactive, rather than proactive, so basically a waiting game for me.
Brain tumors, overrated, right...?
cRaigAl205 said:
Sit Rep: still feeling like st, but without the added distraction of a trip out to be irradiated everyday.. In all honesty, while tiring (and tedious..) I actually ironically miss the structure the routine provided, I'm now 'stuck' at home with just my thoughts while feeling a bit crap, I keep thinking the side effects have peaked, but I think I'm being somewhat optimistic unfortunately.. I can manage a brief bit of 'pottering', followed by a sit or lie down, which is... tedious. As for work, I've volunteered to help out on a couple of my old projects, and in all honesty, its not coming back easily, which is obviously a bit.. concerning.
While I don't regret the treatment, obviously, I'm still trying to get my head around a 'cure' which is objectively worse than any of the presenting symptoms of the disease I'd actually had (I'm sure dying of a brain tumor or having a seizure while driving would have changed my tune, for example..) but I cant help wondering if I'm essentially going to be left with a substantial lump in my head (they've already said they cant operate to remove any more (and they only got a fraction out the first time due to its size/mass/integration with bits of the brain I apparently need..) which they wont definitively know if they've successfully killed off, we are then into a monitoring exercise, which is obviously reactive, rather than proactive, so basically a waiting game for me.
Brain tumors, overrated, right...?
Glad to hear you are progressing through treatment and managing to stay (mostly?) positive!t, but without the added distraction of a trip out to be irradiated everyday.. In all honesty, while tiring (and tedious..) I actually ironically miss the structure the routine provided, I'm now 'stuck' at home with just my thoughts while feeling a bit crap, I keep thinking the side effects have peaked, but I think I'm being somewhat optimistic unfortunately.. I can manage a brief bit of 'pottering', followed by a sit or lie down, which is... tedious. As for work, I've volunteered to help out on a couple of my old projects, and in all honesty, its not coming back easily, which is obviously a bit.. concerning. While I don't regret the treatment, obviously, I'm still trying to get my head around a 'cure' which is objectively worse than any of the presenting symptoms of the disease I'd actually had (I'm sure dying of a brain tumor or having a seizure while driving would have changed my tune, for example..) but I cant help wondering if I'm essentially going to be left with a substantial lump in my head (they've already said they cant operate to remove any more (and they only got a fraction out the first time due to its size/mass/integration with bits of the brain I apparently need..) which they wont definitively know if they've successfully killed off, we are then into a monitoring exercise, which is obviously reactive, rather than proactive, so basically a waiting game for me.
Brain tumors, overrated, right...?
Try to think of it in a positive way, in that you're taking a bet - you're wagering a few months of feeling like s
t now and the payoff could be years of next to normal life that you wouldn't have had without going through it.Best of luck to you!
Thanks! 
Still positive (ish...!) but the tiredness and irritability is certainly creeping in! (some of the side effects from the meds may not be helping.. I've read about something called 'Keppra rage' which sounds, interesting..
I suppose I kinda hit the ground running treating it like a project without much emotion and/or taking it in (I do wonder if I'm on the spectrum in all honesty after my response..!) So having a bit of downtime I guess its not really a surprise I'm mulling things over and want to have a bit of a moan!!
Ho, hum! Onwards and upwards I guess!
Cheers,
Craig
Still positive (ish...!) but the tiredness and irritability is certainly creeping in! (some of the side effects from the meds may not be helping.. I've read about something called 'Keppra rage' which sounds, interesting.. I suppose I kinda hit the ground running treating it like a project without much emotion and/or taking it in (I do wonder if I'm on the spectrum in all honesty after my response..!)
So having a bit of downtime I guess its not really a surprise I'm mulling things over and want to have a bit of a moan!! Ho, hum! Onwards and upwards I guess!
Cheers,
Craig
Unfortunately I find myself having to post on this thread. Mrs. FF had been experiencing brain fog and severe fatigue for about a month before some coercion finally got her to the GP. Not before developing full blown confusion and impulsive shopping habits. Bloods looked ok but the CT sadly showed a 3cm mass somewhere above the pituitary. We've had the MRI just in the past few days and await those results along with the neuro referral.
40 years old and we've 2 young kids, 12 and 9. fk! They know mummy isn't well but I'm dreading that conversation with them
It's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
40 years old and we've 2 young kids, 12 and 9. f
k! They know mummy isn't well but I'm dreading that conversation with themIt's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
Fattyfat said:
Unfortunately I find myself having to post on this thread. Mrs. FF had been experiencing brain fog and severe fatigue for about a month before some coercion finally got her to the GP. Not before developing full blown confusion and impulsive shopping habits. Bloods looked ok but the CT sadly showed a 3cm mass somewhere above the pituitary. We've had the MRI just in the past few days and await those results along with the neuro referral.
40 years old and we've 2 young kids, 12 and 9. fk! They know mummy isn't well but I'm dreading that conversation with them
It's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
That's really rough, sorry to hear you're all having to go through that. 40 years old and we've 2 young kids, 12 and 9. f
k! They know mummy isn't well but I'm dreading that conversation with themIt's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
Hopefully you can get some clarity on what the future looks like soon.
In the meantime, have you reached out to an organisation like MacMillan to get some support? No one should have to go through this without help and my family have found them to be excellent.
Fattyfat said:
Unfortunately I find myself having to post on this thread. Mrs. FF had been experiencing brain fog and severe fatigue for about a month before some coercion finally got her to the GP. Not before developing full blown confusion and impulsive shopping habits. Bloods looked ok but the CT sadly showed a 3cm mass somewhere above the pituitary. We've had the MRI just in the past few days and await those results along with the neuro referral.
40 years old and we've 2 young kids, 12 and 9. fk! They know mummy isn't well but I'm dreading that conversation with them
It's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
Sorry to read that, FF, but welcome to the thread. 40 years old and we've 2 young kids, 12 and 9. f
k! They know mummy isn't well but I'm dreading that conversation with themIt's amazing how these things reset your priorities. I've had to take time off to try and deal with it all and run the house and look after her. It's been a tough few weeks and not knowing the exact diagnosis or treatment plan is agony. Almost as bad as seeing her fear in moments of lucidity.
A few nuggets I've picked up over the last few months which may or may not be useful in the coming months for you both:
a) The NHS, from a medical/care perspective is, in my opinion, top notch. However... the admin, organisational & interdepartmental communication is.. pretty woeful. So don't hesitate to 'push' if you feel you aren't getting anywhere. My parents were great advocating (not in a shouty/obnoxious way, just a case of being there, following up and holding people to the dates they said) Particularly when I literally couldn't speak!! (the experience of being told I had to call to arrange speech therapy was... ironically frustrating at the very least!
b) Maggies Centre: Do look one out, you may be lucky and there is one attached/nearby to your local neuro/onco hospital www.maggies.org/ It's a much nicer and warmer environment to wait/meet than the onco waiting areas (which are pretty bleak as I'm sure you can imagine), more importantly they are geared up with friendly & knowledgeable volunteers (therapists, former cancer nurses, financial/benefit advisors etc) and they plug in really well to other support resources such as Macmillan.
c) Make lists. Even lists of lists if you have to! I'd like to think I'm pretty organised, but at times have been overloaded with information and stuff has gone in & out of my head pretty effortlessly during meetings etc. Don't feel bad about taking your time to make notes during the consultations (I found what got covered in the consultation & what their letter said was often subtly different..) That and get a good calendar going, I've got to the point where I only know what day it is due to my pill organiser!!
Best of luck with it all, do keep us posted.
Cheers,
Craig
Thanks all, very kind words from internet strangers. Obviously not looking to derail the thread or make it about our situation but literally a few months ago our lives couldn't have been any more content. Just back from holidays and summer evening drives out in the TVR. Funny the hand you're dealt.
I'm now sorely regretting not having private health insurance but I was able to use some contacts and pull a few strings (I work for a health trust) to get the CT and MRI done very quickly and within 2 days of each other. Cost me a case or 3 of beers but that's irrelevant. Usually red flag referrals here in NI run at about 4 weeks at present. So I guess we're 2 months ahead or where we should be in that regard.
Next week will consist of a pre existing appointment for MH and unfortunately surrendering her driving licence. Also hope to have the MRI report which might give me some idea of exactly what we're facing. I'm not religious but I'm hoping and praying that surgery is possible to get the damn thing removed.
She keeps apologising for bringing this upon the family and that's emotionally very taxing. Both kids schools have been informed and they have been brilliant. Counselling put in place, extra supervision etc. Didn't stop my son bunking off for 2 days though in response to the general upset at home.
I'm now sorely regretting not having private health insurance but I was able to use some contacts and pull a few strings (I work for a health trust) to get the CT and MRI done very quickly and within 2 days of each other. Cost me a case or 3 of beers but that's irrelevant. Usually red flag referrals here in NI run at about 4 weeks at present. So I guess we're 2 months ahead or where we should be in that regard.
Next week will consist of a pre existing appointment for MH and unfortunately surrendering her driving licence. Also hope to have the MRI report which might give me some idea of exactly what we're facing. I'm not religious but I'm hoping and praying that surgery is possible to get the damn thing removed.
She keeps apologising for bringing this upon the family and that's emotionally very taxing. Both kids schools have been informed and they have been brilliant. Counselling put in place, extra supervision etc. Didn't stop my son bunking off for 2 days though in response to the general upset at home.
Well, things are starting to line up/fall into place before the Chemo kicks off next week. I've been to the GPs today for a blood test to check my white cell count to see if its high enough that what the chemo will knock out I can manage without, and then I had a call with the Specialist Nurse from the hospital where I'm picking up the meds (Temozolomide).
So we spent most of the time running through all the (frankly horrendous) sounding side effects.. And then she finished with the recommendation to not try fathering a child during the treatment.. I reassured her I don't think I'll have it in me.. Even the thought of a Bumble date at the moment is a bit much..
While I haven't checked if I have all the side-effects left over from the radio treatment, I'm fairly sure I have most of them, off the top of my head I'd say currently: bald (obviously), fat, left side weakness, pronounced tremor (much worse when I'm tired) which hinders any DIY or computer work, tinitus, with a bit of added deafness, my eyesight is certainly worse/fuzzier (physically eyes are fine, pressure wise, so that's good, but not worth having an eye test until its all over), fking knackered- There is absolutely a difference between 'tiredness' and 'fatigue', this is a whole other ballgame! I can sleep for 10-12 hours and wake up exhausted. Sometimes getting out of bed and making and eating breakfast means I need a lie down for example..
I guess its not really a surprise when you think they've been firing powerful xrays directly at my brain for several weeks..
But I have a much better idea of whats up next (it makes cheerful/light bedtime reading..), but still somewhat concerned that the 'innocuous' treatment which everyone brushes over the side effects has hit me quite so hard, so I'm obviously worried about whats coming up.
Plus what kind of 'cure' is it if you throw up after taking it you (or the person tasked with cleaning it up) should wear gloves for their protection..? What on earth is it going to do to my insides?!?
And that's before the risks of your white count tanking and you develop sepsis...
Still, gotta just get it over and done with I guess!!
Cheers, Craig
So we spent most of the time running through all the (frankly horrendous) sounding side effects.. And then she finished with the recommendation to not try fathering a child during the treatment.. I reassured her I don't think I'll have it in me.. Even the thought of a Bumble date at the moment is a bit much..
While I haven't checked if I have all the side-effects left over from the radio treatment, I'm fairly sure I have most of them, off the top of my head I'd say currently: bald (obviously), fat, left side weakness, pronounced tremor (much worse when I'm tired) which hinders any DIY or computer work, tinitus, with a bit of added deafness, my eyesight is certainly worse/fuzzier (physically eyes are fine, pressure wise, so that's good, but not worth having an eye test until its all over), f
king knackered- There is absolutely a difference between 'tiredness' and 'fatigue', this is a whole other ballgame! I can sleep for 10-12 hours and wake up exhausted. Sometimes getting out of bed and making and eating breakfast means I need a lie down for example.. I guess its not really a surprise when you think they've been firing powerful xrays directly at my brain for several weeks..
But I have a much better idea of whats up next (it makes cheerful/light bedtime reading..
), but still somewhat concerned that the 'innocuous' treatment which everyone brushes over the side effects has hit me quite so hard, so I'm obviously worried about whats coming up. Plus what kind of 'cure' is it if you throw up after taking it you (or the person tasked with cleaning it up) should wear gloves for their protection..? What on earth is it going to do to my insides?!?
And that's before the risks of your white count tanking and you develop sepsis...
Still, gotta just get it over and done with I guess!!
Cheers, Craig
I know it's different but I had a stem cell transplant in '09 and in the two weeks after I though I was going to die and then wished I had died. A couple of months later there was light at the end of the tunnel. Now I'm not the man I was before but I'm still here being annoying, eating chips and thinking on balance that life is better than the alternative. Never give in, never surrender. Fight always. Lots of love and best wishes to you.
cRaigAl205 said:
Well, things are starting to line up/fall into place before the Chemo kicks off next week. I've been to the GPs today for a blood test to check my white cell count to see if its high enough that what the chemo will knock out I can manage without, and then I had a call with the Specialist Nurse from the hospital where I'm picking up the meds (Temozolomide).
So we spent most of the time running through all the (frankly horrendous) sounding side effects.. And then she finished with the recommendation to not try fathering a child during the treatment.. I reassured her I don't think I'll have it in me.. Even the thought of a Bumble date at the moment is a bit much..
While I haven't checked if I have all the side-effects left over from the radio treatment, I'm fairly sure I have most of them, off the top of my head I'd say currently: bald (obviously), fat, left side weakness, pronounced tremor (much worse when I'm tired) which hinders any DIY or computer work, tinitus, with a bit of added deafness, my eyesight is certainly worse/fuzzier (physically eyes are fine, pressure wise, so that's good, but not worth having an eye test until its all over), fking knackered- There is absolutely a difference between 'tiredness' and 'fatigue', this is a whole other ballgame! I can sleep for 10-12 hours and wake up exhausted. Sometimes getting out of bed and making and eating breakfast means I need a lie down for example..
I guess its not really a surprise when you think they've been firing powerful xrays directly at my brain for several weeks..
But I have a much better idea of whats up next (it makes cheerful/light bedtime reading..), but still somewhat concerned that the 'innocuous' treatment which everyone brushes over the side effects has hit me quite so hard, so I'm obviously worried about whats coming up.
Plus what kind of 'cure' is it if you throw up after taking it you (or the person tasked with cleaning it up) should wear gloves for their protection..? What on earth is it going to do to my insides?!?
And that's before the risks of your white count tanking and you develop sepsis...
Still, gotta just get it over and done with I guess!!
Cheers, Craig
Hang in there - many cancers are nasty fSo we spent most of the time running through all the (frankly horrendous) sounding side effects.. And then she finished with the recommendation to not try fathering a child during the treatment.. I reassured her I don't think I'll have it in me.. Even the thought of a Bumble date at the moment is a bit much..
While I haven't checked if I have all the side-effects left over from the radio treatment, I'm fairly sure I have most of them, off the top of my head I'd say currently: bald (obviously), fat, left side weakness, pronounced tremor (much worse when I'm tired) which hinders any DIY or computer work, tinitus, with a bit of added deafness, my eyesight is certainly worse/fuzzier (physically eyes are fine, pressure wise, so that's good, but not worth having an eye test until its all over), f
king knackered- There is absolutely a difference between 'tiredness' and 'fatigue', this is a whole other ballgame! I can sleep for 10-12 hours and wake up exhausted. Sometimes getting out of bed and making and eating breakfast means I need a lie down for example.. I guess its not really a surprise when you think they've been firing powerful xrays directly at my brain for several weeks..
But I have a much better idea of whats up next (it makes cheerful/light bedtime reading..
), but still somewhat concerned that the 'innocuous' treatment which everyone brushes over the side effects has hit me quite so hard, so I'm obviously worried about whats coming up. Plus what kind of 'cure' is it if you throw up after taking it you (or the person tasked with cleaning it up) should wear gloves for their protection..? What on earth is it going to do to my insides?!?
And that's before the risks of your white count tanking and you develop sepsis...
Still, gotta just get it over and done with I guess!!
Cheers, Craig
kers and you have to go through hell to get rid of them!Well, the "holiday" is coming to an end and it all kicks off again tomorrow! So this is "just" Round 1/The first month's chemo & side effect treatment tablet supply....
Plus I'm not that great at taking tablets, so...
The plastic pot is so I can dispense the chemo tablet and take it without touching it.. #safetyfirst #whataboutmyinsides?!?
By my reckoning I'll be taking a minimum of 13 tablets a day, plus a few more if I feel st (or can't have one for example... constipation is a common side effect, so I'm told..) Literally only one is actually treating the cancer. The others are either nausea or 'bowel movement' related.. (plus the other odds and sods, anti-epilepsy and steroids etc. I'm currently taking and will continue with).
I've been read the riot act on the various side effects, they are helpfully grouped red, amber & green, Red means call the hospital asap 24/7, two Ambers equals a red so ditto, Green, pretty common, so suck it up buttercup!
Sepsis is the main concern (if white blood count tanks)- but they will monitor it before every 'round' and I've already bought a thermometer in anticipation so will monitor as required (so its 5 days of treatment, followed by 23 days of recovery). Still at least I can do this in the discomfort of my own home, beats the hell out of an hour each way trip to Cheltenham for IV chemo for example!!
I'll keep you guys posted...! Hope you are ready for a bit of moaning I suspect..
Cheers,
Craig
Plus I'm not that great at taking tablets, so...
The plastic pot is so I can dispense the chemo tablet and take it without touching it.. #safetyfirst #whataboutmyinsides?!?
By my reckoning I'll be taking a minimum of 13 tablets a day, plus a few more if I feel s
t (or can't have one for example... constipation is a common side effect, so I'm told..) Literally only one is actually treating the cancer. The others are either nausea or 'bowel movement' related.. (plus the other odds and sods, anti-epilepsy and steroids etc. I'm currently taking and will continue with).I've been read the riot act on the various side effects, they are helpfully grouped red, amber & green, Red means call the hospital asap 24/7, two Ambers equals a red so ditto, Green, pretty common, so suck it up buttercup!
Sepsis is the main concern (if white blood count tanks)- but they will monitor it before every 'round' and I've already bought a thermometer in anticipation so will monitor as required (so its 5 days of treatment, followed by 23 days of recovery). Still at least I can do this in the discomfort of my own home, beats the hell out of an hour each way trip to Cheltenham for IV chemo for example!!
I'll keep you guys posted...! Hope you are ready for a bit of moaning I suspect..
Cheers,
Craig
cRaigAl205 said:
Plus I'm not that great at taking tablets, so...
fwiw I still have to bang in 15 a day. I find the trick is to ignore the tablets and concentrate on swallowing the milk (which I find much easier to chug than water). Tablets onto tongue, large gulp and have enough liquid left over in case you need a follow up swallow. It gets a lot easier after years of practice!
I'm certainly better than I was! I find pre-swig to stop the tablet sticking to my tongue followed by a big gulp works! (I really don't know why the NHS persevere with the cheap and cheerful powdery tablets ) I was hoping I could wrap the tablets in ham like you would with a dog, but unfortunately a lot are nill by mouth or a hour after food so that's off the table!
) I was hoping I could wrap the tablets in ham like you would with a dog, but unfortunately a lot are nill by mouth or a hour after food so that's off the table!cRaigAl205 said:
Well, the "holiday" is coming to an end and it all kicks off again tomorrow! So this is "just" Round 1/The first month's chemo & side effect treatment tablet supply....
Plus I'm not that great at taking tablets, so...
The plastic pot is so I can dispense the chemo tablet and take it without touching it.. #safetyfirst #whataboutmyinsides?!?
By my reckoning I'll be taking a minimum of 13 tablets a day, plus a few more if I feel st (or can't have one for example... constipation is a common side effect, so I'm told..) Literally only one is actually treating the cancer. The others are either nausea or 'bowel movement' related.. (plus the other odds and sods, anti-epilepsy and steroids etc. I'm currently taking and will continue with).
I've been read the riot act on the various side effects, they are helpfully grouped red, amber & green, Red means call the hospital asap 24/7, two Ambers equals a red so ditto, Green, pretty common, so suck it up buttercup!
Sepsis is the main concern (if white blood count tanks)- but they will monitor it before every 'round' and I've already bought a thermometer in anticipation so will monitor as required (so its 5 days of treatment, followed by 23 days of recovery). Still at least I can do this in the discomfort of my own home, beats the hell out of an hour each way trip to Cheltenham for IV chemo for example!!
I'll keep you guys posted...! Hope you are ready for a bit of moaning I suspect..
Cheers,
Craig
Right, controversial input incoming.Plus I'm not that great at taking tablets, so...
The plastic pot is so I can dispense the chemo tablet and take it without touching it.. #safetyfirst #whataboutmyinsides?!?
By my reckoning I'll be taking a minimum of 13 tablets a day, plus a few more if I feel s
t (or can't have one for example... constipation is a common side effect, so I'm told..) Literally only one is actually treating the cancer. The others are either nausea or 'bowel movement' related.. (plus the other odds and sods, anti-epilepsy and steroids etc. I'm currently taking and will continue with).I've been read the riot act on the various side effects, they are helpfully grouped red, amber & green, Red means call the hospital asap 24/7, two Ambers equals a red so ditto, Green, pretty common, so suck it up buttercup!
Sepsis is the main concern (if white blood count tanks)- but they will monitor it before every 'round' and I've already bought a thermometer in anticipation so will monitor as required (so its 5 days of treatment, followed by 23 days of recovery). Still at least I can do this in the discomfort of my own home, beats the hell out of an hour each way trip to Cheltenham for IV chemo for example!!
I'll keep you guys posted...! Hope you are ready for a bit of moaning I suspect..
Cheers,
Craig
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.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff