Cancer support thread

MrFraggle

Distinguished Member
Your consultant didn't tell you any of those things? That's terrible! 🙁
She had been in the job far too long, I lost the ability to swallow mainly because she refused to believe I coukd not very early into treatment, as far as she was concerned I was not trying hard enough. I complained, she retired and that was pretty much the end of it, I now live on a liquid diet.
 

WeeScottishLass

Well-known Member
She had been in the job far too long, I lost the ability to swallow mainly because she refused to believe I coukd not very early into treatment, as far as she was concerned I was not trying hard enough. I complained, she retired and that was pretty much the end of it, I now live on a liquid diet.
Oh wow, I'm so sorry to hear that 😢
 

brian s

Distinguished Member
She had been in the job far too long, I lost the ability to swallow mainly because she refused to believe I coukd not very early into treatment, as far as she was concerned I was not trying hard enough. I complained, she retired and that was pretty much the end of it, I now live on a liquid diet.
I had the complete reverse problem. They didn't believe I was able to swallow as well as I said I could. I had to drink a full glass of water in front of them to show I was able to do it. I managed to continue eating throughout the treatment and didn't need to go on to a food tube. I gather that was very unusual.

Bri
 

MrFraggle

Distinguished Member
I think the medical staff only warn about the most common side effects. If they told you everything you might get it could put you off having the treatment in the first place. My taste buds and saliva glands don't work quite as well as they used to so I've had to adjust my diet. I also have to avoid some foods as they bring on acid reflux.
Not wanting to cause an argument but there really is no such things as common side effects as until treatment for illness is personalized and we do not have to use a sledgehammer to crack a nut as in cancer treatment then we all need to be aware of the probable and possible side effects of cancer treatment.
It was six months after treatment end that again by chance, I mentioned to my GP that I was cold in the sun and after tests discovered that I had hypothyroidism. If I had been aware that this was a possibility and been made aware of the symptoms I would not have just assumed that being cold was another weird side effect of which there were many.

I met many folk who were scared silly because they had been diagnosed with big C and relied totally on the medical staff to help them but the lack of information was quite alarming a situation which has improved as a small group of us have badgered the authorities to make information more readily accessible.
 

MrFraggle

Distinguished Member
I had the complete reverse problem. They didn't believe I was able to swallow as well as I said I could. I had to drink a full glass of water in front of them to show I was able to do it. I managed to continue eating throughout the treatment and didn't need to go on to a food tube. I gather that was very unusual.

Bri
Very unusual, in my health board you got a tube, a PEG, as a matter of course. This was the most painful experience ever and the damn thing fell out three times.
A guy who had the same cancer as me Stage 4 Squamous carcinoma of the right tonsil was like you, ate and drank right though the treatment, in fact for him the whole experience was akin to a cold, me I was the other end , I suffered greatly not helped by my consultant.
 

brian s

Distinguished Member
Not wanting to cause an argument but there really is no such things as common side effects as until treatment for illness is personalized and we do not have to use a sledgehammer to crack a nut as in cancer treatment then we all need to be aware of the probable and possible side effects of cancer treatment.
It was six months after treatment end that again by chance, I mentioned to my GP that I was cold in the sun and after tests discovered that I had hypothyroidism. If I had been aware that this was a possibility and been made aware of the symptoms I would not have just assumed that being cold was another weird side effect of which there were many.

I met many folk who were scared silly because they had been diagnosed with big C and relied totally on the medical staff to help them but the lack of information was quite alarming a situation which has improved as a small group of us have badgered the authorities to make information more readily accessible.
In my experience there are quite a few common side effects that most of us had albeit at different levels. I was the only one I know who got chemobrain and could continue to eat without a food tube. I was bloody freezing during the first 2 winters after my treatment. I've no idea if that was hypothyroidism. If it was I was never told about it.

Bri
 

brian s

Distinguished Member
Very unusual, in my health board you got a tube, a PEG, as a matter of course. This was the most painful experience ever and the damn thing fell out three times.
A guy who had the same cancer as me Stage 4 Squamous carcinoma of the right tonsil was like you, ate and drank right though the treatment, in fact for him the whole experience was akin to a cold, me I was the other end , I suffered greatly not helped by my consultant.
I was pencilled in for it around halfway through the treatment but I managed to convince my medical team that I was doing well enough without it and they agreed to put it off for that week and look at the situation again the next week. I got a call from someone who was in charge of the scheduling for the PEGs. He was clearly put out that I'd fouled up his routine. He was basically trying to bully me into getting one anyway even though I didn't need it. He was the very worst problem I had with the NHS during that period. I did wonder if more people might manage without one but just gave in after such pressure. I had painful mouth sores but was able to put up with them. I've always had a very high resistance to pain killing medication and suffered back pain for many years so I was able to cope with them.

Bri
 

BT Bob

Well-known Member
Genuine question for those who've had the misfortune of going through this - what made you think "hey, I should get this checked out"? My biggest fear is that I may not even realise that I have something wrong until it's quite advanced (same for my wife really), especially since we're not really whingers and we tend to just get on with things unless it's obviously something bad.
I'm not sure there's a good answer to this.
There's the obvious things - check your testicles regularly, and your wife her breasts (for most people I know, this is now "the norm" and is talked about quite openly).
For men, the other obvious thing to get checked is the prostate - depending on your age, you GP should be doing this fairly regularly. I say "should" but I'm sure they don't do it as often as would be ideal.
In my wife's case - she spotted a lump in her breast and got ti checked straight away (fortunately fir her, she was working for BUPA at the time as a secretary and they whisked her in for a scan ASAP).
Her bowel cancer (and anal squamous) was found entirely by chance during a BUPA health check. She had no symptoms of any kind prior to this and had she waited till she had, the likelihood id it would been a blockage and too late to avoid a stoma (possibly too late to do anything).

You do raise a valid point though - at what point does that pain/cough/itchy spot become something you take note seriously and try to get a GP's appointment?
When you call our GPs now, yup have to listen to a 5-minute spiel about all the things they don't want to see you for and recommend you got to a pharmacist/dentist/optician, etc. By the same token, no one wants to be a time-waster and go every week for something "trivial".
 

MrFraggle

Distinguished Member
I was pencilled in for it around halfway through the treatment but I managed to convince my medical team that I was doing well enough without it and they agreed to put it off for that week and look at the situation again the next week. I got a call from someone who was in charge of the scheduling for the PEGs. He was clearly put out that I'd fouled up his routine. He was basically trying to bully me into getting one anyway even though I didn't need it. He was the very worst problem I had with the NHS during that period. I did wonder if more people might manage without one but just gave in after such pressure. I had painful mouth sores but was able to put up with them. I've always had a very high resistance to pain killing medication and suffered back pain for many years so I was able to cope with them.

Bri
Note sure we even had a choice as it was inserted before treatment, I suspect that this was expedient rather than really necessary as I did meet folk who although not eating normally were managing perfectly well on getting the necessary high levels of calories etc needed during treatment and beyond.

I had mine in for nearly a year because I could not swallow anything including liquids but once I could get some Fortisip down following a throat stretching operation I took the thing out.
They wanted me to have it reinserted some months later but I resisted and thankfully that was the right decision.
 

sergiup

Distinguished Member
I'm not sure there's a good answer to this.
There's the obvious things - check your testicles regularly, and your wife her breasts (for most people I know, this is now "the norm" and is talked about quite openly).
For men, the other obvious thing to get checked is the prostate - depending on your age, you GP should be doing this fairly regularly. I say "should" but I'm sure they don't do it as often as would be ideal.
In my wife's case - she spotted a lump in her breast and got ti checked straight away (fortunately fir her, she was working for BUPA at the time as a secretary and they whisked her in for a scan ASAP).
Her bowel cancer (and anal squamous) was found entirely by chance during a BUPA health check. She had no symptoms of any kind prior to this and had she waited till she had, the likelihood id it would been a blockage and too late to avoid a stoma (possibly too late to do anything).

You do raise a valid point though - at what point does that pain/cough/itchy spot become something you take note seriously and try to get a GP's appointment?
When you call our GPs now, yup have to listen to a 5-minute spiel about all the things they don't want to see you for and recommend you got to a pharmacist/dentist/optician, etc. By the same token, no one wants to be a time-waster and go every week for something "trivial".
Thank you; I'm still young(ish, now - 35) so chances are still low. I do get a full health-check (incl PSA check - I think I was told that establishing a baseline for this is important), so at least I'm trying...
 

BT Bob

Well-known Member
Thank you; I'm still young(ish, now - 35) so chances are still low. I do get a full health-check (incl PSA check - I think I was told that establishing a baseline for this is important), so at least I'm trying...
I think the PSA tests have improved but they used to have a poor reputation for accuracy.

But - just wait till you turn 50, and you go to you GP.... they can't wait to get you on that bed in their office while they pop the latex glove on for a "quick check".... o_O:laugh:
 

le4thab

Active Member
Genuine question for those who've had the misfortune of going through this - what made you think "hey, I should get this checked out"? My biggest fear is that I may not even realise that I have something wrong until it's quite advanced (same for my wife really), especially since we're not really whingers and we tend to just get on with things unless it's obviously something bad.
I had a cough and a sore chest. Left it for ages, then had 2 different GP appointments where I was told firstly nothing was wrong with me, second appointment was given antibiotics. Third time I had developed symptoms including numbness / pins and needles in my left arm. Phoned GP and was told no appointments for approx 3 weeks, but given the option to sit in for an emergency appointment. 6 hour later I was seen by a different GP. Was told as was an emergency appointment, I could only discuss 1 problem. I explained about numbness and pins and needles in left arm and was sent for an x-ray. This were super fast from there, back to the doctors the next day and I was seeing a specialist inside of a week. Best part of it all was the GP having the balls to ask me "Whats this about a sore chest then?" after the x-ray showed a large shadow!
 

sergiup

Distinguished Member
I think the PSA tests have improved but they used to have a poor reputation for accuracy.

But - just wait till you turn 50, and you go to you GP.... they can't wait to get you on that bed in their office while they pop the latex glove on for a "quick check".... o_O:laugh:
I've been told in no uncertain terms that PSA tests don't mean that much - it's supposedly more about establishing a baseline, and reacting if the values change more than they think they should. Makes sense..!
 

MrFraggle

Distinguished Member
I had an op on my prostate, not cancer related and I think the worst bit is the catheter, no that is not right the worst bit is getting it out, nope that is also wrong the worst bit is if you do not pee within two hours of removal it will be put back in but this time not under a general anaesthetic, the absolute relief when finally I did.
Might add the catheter is bloody big. 😭
 

mitchec1

Distinguished Member
Genuine question for those who've had the misfortune of going through this - what made you think "hey, I should get this checked out"? My biggest fear is that I may not even realise that I have something wrong until it's quite advanced (same for my wife really), especially since we're not really whingers and we tend to just get on with things unless it's obviously something bad.
The wife was asked this question a couple of weeks ago.

Her blood tests 3 months before she was diagnosed were normal

Slightly overweight she'd been doing water aerobics , losing weight then feeling slightly bloated, feeling full on less food, slightly heavier periods.

She was doing a water aerobics class the day before, woke up the next day, then a stabbing pain.

Stubborn as she is thought she was going to work, trip to the to gp, straight to A&E.

Can always remember the doctor pushing down because he thought it was an appendicitis and the Mrs nearly decking him.

One general surgeon having a gentle play referred to gynecology and finding out it's an ovarian tumor.

Moral of this on put a frog in water and slowly heat it up.

Looking back the signs were there but we didn't really notice.

Roll on op time a mucinous ovarian tumor, weighing 36kg including fluid staged 1c2.

2 days in ICU couple of days on ward and then back home.

We're lucky we've made a lot of friends from the op ward still ongoing treatment.

Unfortunately some aren't here today


Edit: should add part of why we picked up our lives moved out of London, down near the beach for a different way of life.

Three and a bit year's on and the wife has an incisional hernia to sort out from the original op, but she's alive and we're just living our life and enjoying each day
 
Last edited:

DIYlady

Distinguished Member
Indeed. I have chemobrain as one of my side effects. It affects both my memory and concentration. I thought I was coming down with some form of dementia. It was MacMillan who told me it was probably chemobrain rather than dementia. I was struggling with memory issues quite early on in the treatment so writing down everything is a very good idea.

I'm a lot better now but still have to write myself reminders.

Bri
I got chemo brain to the point of finding it virtually impossible to read a book. I still struggle a bit and am not as quick as I used to be

chemo also affected my hearing. I was already a hearing aids wearer, so have the before and after test records to prove it. Never regained the hearing loss either.
 

MrFraggle

Distinguished Member
I got chemo brain to the point of finding it virtually impossible to read a book. I still struggle a bit and am not as quick as I used to be

chemo also affected my hearing. I was already a hearing aids wearer, so have the before and after test records to prove it. Never regained the hearing loss either.
I used to be a prolific reader but now I do not have the concentration to read a book and have not read one for a decade. Also my ability to learn new skills or process new information has been severely affected, tried to get into DLSR photography and found that I could read how to do something several times and will have completely forgotten it a few hours later.
 

brian s

Distinguished Member
I got chemo brain to the point of finding it virtually impossible to read a book. I still struggle a bit and am not as quick as I used to be

chemo also affected my hearing. I was already a hearing aids wearer, so have the before and after test records to prove it. Never regained the hearing loss either.
I'm sorry to hear of your problems. I'm having reading issues myself at the moment. I just can't get into fiction and I'm only reading non fiction. Biographies and making of books of my favourite tv shows mainly. I'm hoping that'll pass as I went through a similar phase at one point before I had cancer. There came a time during my treatment when I didn't have enough energy or concentration to watch an entire film. A big blow as I love watching films. I could watch tv shows of up to around an hour long. How much that was directly down to the actual treatment I'm not sure because I only managed to get around 30 to 40 minutes of sleep at a time. Severe dryness of my mouth was the cause of that. I usually got straight back to sleep once I'd managed to get something to drink. Weirdly during this period I read a lot. Probably at least 8 or 9 books a week.

I had a hearing test as part of the preparation for my treatment. They reckoned I had excellent hearing for my age and I seem to be reasonably ok now. I do have quite bad chest congestion though and at it's worst my ears do get blocked up. I find regular exercise helps.

Bri
 

JimmyMac

Distinguished Member
Good to see people talking about their experiences here, a lot of things that I didn't realise we needed to consider!

Mum is having her picc line put in next week and starts 20 weeks of her first stage of chemo on the 25th of the month. So things are moving quickly, long road to go down yet but all got our positive heads on
 

brian s

Distinguished Member
Good to see people talking about their experiences here, a lot of things that I didn't realise we needed to consider!

Mum is having her picc line put in next week and starts 20 weeks of her first stage of chemo on the 25th of the month. So things are moving quickly, long road to go down yet but all got our positive heads on
Good to hear you're all so positive. Keep on posting here. We'll give advice when we can.

Best wishes.
Bri
 

MrFraggle

Distinguished Member
Good to see people talking about their experiences here, a lot of things that I didn't realise we needed to consider!

Mum is having her picc line put in next week and starts 20 weeks of her first stage of chemo on the 25th of the month. So things are moving quickly, long road to go down yet but all got our positive heads on
Do youknow what chemo she will be on? I was on Cisplatin which to put it mildly was a poison so much so I was told not to stand up when I had a pee as any splashes on the toilet seat could mean that my partner might absorb the stuff through her skin and quite a few other precautions were needed some of which my medical team failed to mention.
One thing they really should have mentioned was the possibility of severe chest pains after the first dose, oh and I got them and my good lady was so concerned that I was having a heart attack dialled 999.
The next time I was up for chemo I mentioned this to the staff and they casually mentioned that this can happen and had no one told me of the possibility?

Tell your mum a bunch of strangers are all rooting for her. :)
 

brian s

Distinguished Member
Do youknow what chemo she will be on? I was on Cisplatin which to put it mildly was a poison so much so I was told not to stand up when I had a pee as any splashes on the toilet seat could mean that my partner might absorb the stuff through her skin and quite a few other precautions were needed some of which my medical team failed to mention.
One thing they really should have mentioned was the possibility of severe chest pains after the first dose, oh and I got them and my good lady was so concerned that I was having a heart attack dialled 999.
The next time I was up for chemo I mentioned this to the staff and they casually mentioned that this can happen and had no one told me of the possibility?

Tell your mum a bunch of strangers are all rooting for her. :)
I don't have the faintest idea what type of chemo I was on but I didn't get any warnings like those. I was just told not to have unprotected sex. Chance would be a fine thing once the side effects started kicking in.

:eek:
Bri
 

JimmyMac

Distinguished Member
Do youknow what chemo she will be on? I was on Cisplatin which to put it mildly was a poison so much so I was told not to stand up when I had a pee as any splashes on the toilet seat could mean that my partner might absorb the stuff through her skin and quite a few other precautions were needed some of which my medical team failed to mention.
One thing they really should have mentioned was the possibility of severe chest pains after the first dose, oh and I got them and my good lady was so concerned that I was having a heart attack dialled 999.
The next time I was up for chemo I mentioned this to the staff and they casually mentioned that this can happen and had no one told me of the possibility?

Tell your mum a bunch of strangers are all rooting for her. :)
thanks, I’ll let her know :D

she will be on paclitaxel which I’m told isn’t too bad and one of the better ones. She moves to another chemo after 20 weeks specifically designed for breast cancer before she has her mastectomy
 

BT Bob

Well-known Member
Its a pity there's not a "fingers-crossed" 🤞 smilie with the Like/Thanks/etc ones.
 

DIYlady

Distinguished Member
thanks, I’ll let her know :D

she will be on paclitaxel which I’m told isn’t too bad and one of the better ones. She moves to another chemo after 20 weeks specifically designed for breast cancer before she has her mastectomy
How has she fared so far? I’m guessing that she is poisoned every 3 weeks as this seems to be the norm with cancer. So this would mean she will be near the end of round one?
 

Similar threads

The latest video from AVForums

Podcast: LCD TVs for Movies, Laser Projectors, RIP Ennio Morricone, AV & Movie news, B+W Matt Damon

Trending threads

Latest News

QDC Blue Dragon earphones on sale in UK
  • By Andy Bassett
  • Published
TV licence fee now applies to over 75s from 1st Aug
  • By Andy Bassett
  • Published
New H.266 video codec promises 50 percent data saving
  • By Andy Bassett
  • Published
Toshiba launches UL20 4K HDR TVs from £299
  • By Andy Bassett
  • Published
LG GX soundbar launches in UK
  • By Andy Bassett
  • Published
Top Bottom