Effing cancer is an effing effer, frankly
Discussion
never give up . A friend of mine was under Christies in Manchester and given 3-5 years max after 5 years they said no more treatment left for you buddy and off he went home to sort out his affairs.
A week later he got a call to ask if he would like to try a new drug on trial of course he said yes and nearly 3 years later he is still here he gets checked regularly and is doing ok. He is going to die sooner or later Cancer always wins in the end but he has seen his son Graduate and move abroad and he has seen his son give him a grandson .
Now my details may be a bit off but the story is true there is always hope of keeping some dignity and quality of life as even an extra day with loved ones has to be worth the effort.
A week later he got a call to ask if he would like to try a new drug on trial of course he said yes and nearly 3 years later he is still here he gets checked regularly and is doing ok. He is going to die sooner or later Cancer always wins in the end but he has seen his son Graduate and move abroad and he has seen his son give him a grandson .
Now my details may be a bit off but the story is true there is always hope of keeping some dignity and quality of life as even an extra day with loved ones has to be worth the effort.
Had my bowel cancer operation last September (2017) and removal of the stoma bag in February (2018). (No radio or chemo was required)
This morning I had my one year colonoscopy and good news is all is clear.
I have a followup next Thursday with the surgeon.
Slightly surprised to be told this morning that the next colonoscopy will be in 3 years.
I'll get further details at the surgeons appointment next week but would have thought it would be sooner.
Are all NHS regions the same or is anyone on a more frequent protocol?
This morning I had my one year colonoscopy and good news is all is clear.
I have a followup next Thursday with the surgeon.
Slightly surprised to be told this morning that the next colonoscopy will be in 3 years.
I'll get further details at the surgeons appointment next week but would have thought it would be sooner.
Are all NHS regions the same or is anyone on a more frequent protocol?
sas62 said:
Had my bowel cancer operation last September (2017) and removal of the stoma bag in February (2018). (No radio or chemo was required)
This morning I had my one year colonoscopy and good news is all is clear.
I have a followup next Thursday with the surgeon.
Slightly surprised to be told this morning that the next colonoscopy will be in 3 years.
I'll get further details at the surgeons appointment next week but would have thought it would be sooner.
Are all NHS regions the same or is anyone on a more frequent protocol?
After my first op for bowel cancer I had a colonoscopy every year.This morning I had my one year colonoscopy and good news is all is clear.
I have a followup next Thursday with the surgeon.
Slightly surprised to be told this morning that the next colonoscopy will be in 3 years.
I'll get further details at the surgeons appointment next week but would have thought it would be sooner.
Are all NHS regions the same or is anyone on a more frequent protocol?
They tried to get me to have it every two years but I had a moan and they left it yearly.
Then had some more growths which did turn cancerous so had another op.
They kept the colonoscopies yearly until the last one when they told me that that guidelines said every three year, so had another moan and will get them every two years with a CT scan in the intervening years.
I think financial concerns are coming into play, but they obviously wont admit that.
Wife whose family have a history of bowel cancer is every year for camera up the bum! She tries every excuse to get out of it but the GP / Health Trust make it clear if she gets C she has herself to blame and no recourse on them if she doesn't stick to their monitoring protocol. (Backstory her father was failed by "missed / non scheduled" appointments so there was a "settlement" in his situation). She is 49. This started after her father died when she was at just 32. Some signs found in biopsies at 45 but nothing since, so shows, can happen younger than you think.
king around and get with the programme.N7GTX said:
On the Prostate Cancer UK forum I found this story by a chap talking about the ending. This is a taboo subject for many, I'm sure and not something many will want to dwell on or discuss with friends and family. After all, we must be positive, new cures are just round the corner......... anyway, if you have a couple of minutes, please have a read. I found it very thought provoking.
{snipped}
It was, very.{snipped}
Having being diagnosed back in 2010 (24th Dec) it highlighted many ongoing fears many go through despite supposed successful outcomes with their treatments, there is always that nag, a nag that can become persistent when something untoward comes up.
I finished my course of various treatments and radiotherapy at the end of 2011, and barring 6 monthly PSA blood tests, life thankfully goes on and on the whole my health is very good and the past rarely enters my thoughts.
I was always very positive even when diagnosed (not the best of prognosis) and remained that way all the way through the next 10-12 months, and the positivity continues, however when the past does get revisited it's that nag, it's always there and rarely if ever gets discussed.
Well the dreaded F-word has been mentioned......Funding.
When I was diagnosed in 2017, I received funding from the 2017 NHS Scotland budget, which it seems is not indefinite.
The cetuximab is my main cancer drug which I receive through a Hickman Line but as mentioned in previous posts, after a year's treatment the side-effects are starting to take its toll, namely osteoporosis, which has weakened my spine and put me into a wheelchair.
The doctors suggested zoledronic acid which can help strengthen the bones but due to funding, I can only have it once per year. Ok, that's unfortunate but not a disaster. So I had a dose of that which took only 15 minutes.
The doctor's also suggested taking a break from chemo, which I was intending to do, so I could rebuild my strength and come back to chemo fitter and stronger. We asked the question, can I get back onto the same treatment after the break? No problem they said.
A few weeks later, we were arranging the dates to come off chemo and the doctor piped up, 'But you won't get back onto cetuximab or the HL due to funding but we do have other treatments available.
Now I was pretty insistent and clear on my questions but I'm not wanting to get into the blame game but it's pretty unfair for the doctors to suggest a break, knowing full well, there would be a change in treatment due to funding and I wouldn't be on the most effective drugs.
I also understand that their hands are tied, it's not their fault. I'm sure if they could they would put everyone on the best and most effective treatment and screw the cost.
But it does feel like a slap in the face and it's two steps forwards and three back.
I live on my own in my own property on the first floor and it's not wheelchair friendly, so have been looking into being rehoused by the local council. And all this costs money, as the kitchen would need to be made wheelchair friendly, as would the bathroom and bedroom.
I just think, if somebody took a step back and looked at the Big Picture of the cost to the taxpayer of rehousing me, providing a carer etc, compared to keeping the funding of the chemo drugs, which I feel would definitely be the most prudent choice overall.
But hey, what do I know?
When I was diagnosed in 2017, I received funding from the 2017 NHS Scotland budget, which it seems is not indefinite.
The cetuximab is my main cancer drug which I receive through a Hickman Line but as mentioned in previous posts, after a year's treatment the side-effects are starting to take its toll, namely osteoporosis, which has weakened my spine and put me into a wheelchair.
The doctors suggested zoledronic acid which can help strengthen the bones but due to funding, I can only have it once per year. Ok, that's unfortunate but not a disaster. So I had a dose of that which took only 15 minutes.
The doctor's also suggested taking a break from chemo, which I was intending to do, so I could rebuild my strength and come back to chemo fitter and stronger. We asked the question, can I get back onto the same treatment after the break? No problem they said.
A few weeks later, we were arranging the dates to come off chemo and the doctor piped up, 'But you won't get back onto cetuximab or the HL due to funding but we do have other treatments available.
Now I was pretty insistent and clear on my questions but I'm not wanting to get into the blame game but it's pretty unfair for the doctors to suggest a break, knowing full well, there would be a change in treatment due to funding and I wouldn't be on the most effective drugs.
I also understand that their hands are tied, it's not their fault. I'm sure if they could they would put everyone on the best and most effective treatment and screw the cost.
But it does feel like a slap in the face and it's two steps forwards and three back.
I live on my own in my own property on the first floor and it's not wheelchair friendly, so have been looking into being rehoused by the local council. And all this costs money, as the kitchen would need to be made wheelchair friendly, as would the bathroom and bedroom.
I just think, if somebody took a step back and looked at the Big Picture of the cost to the taxpayer of rehousing me, providing a carer etc, compared to keeping the funding of the chemo drugs, which I feel would definitely be the most prudent choice overall.
But hey, what do I know?
Edited by mp3manager on Tuesday 18th September 23:44
That is a terrible situation to put you in. Hobson's choice again due to money. Is there any way you could contact one of the main cancer charities to help out or take up your case? Letter to local MP? We have local Healthwatch groups who can tackle the NHS on your behalf. Worth a go?
I wish you all the best.
I've been fighting for months and months, in fact over a year now, to get the local Care Commissioning Group (CCG) to fund GPs so they can do monitoring in primary care like all the other CCGs in the area. Currently I have to go to the GP for the blood tests/injections but they will not do the follow up monitoring. I have been dropped off any monitoring by the secondary care and only after a formal complaint did they put me back on. But I've fallen off again so no blood test, no monitoring. All due to money issues as the CCG is currently £16.7m in the red.
The chairman of the CCG works 2 days at his surgery and 3 days at the CCG. His CCG pay was increased by 4% and is now £130,000 a year. No point the government handing out another £500m as we wont see it.
In just over a week I am telling my cancer story to a room full of health professionals including consultants, nurses, admin staff and cancer charity reps. Prostate Cancer UK is funding this effort to ensure the same level of service is provided throughout the country. I understand all of Wales has accepted this so progress is being made.
I wish you all the best.
I've been fighting for months and months, in fact over a year now, to get the local Care Commissioning Group (CCG) to fund GPs so they can do monitoring in primary care like all the other CCGs in the area. Currently I have to go to the GP for the blood tests/injections but they will not do the follow up monitoring. I have been dropped off any monitoring by the secondary care and only after a formal complaint did they put me back on. But I've fallen off again so no blood test, no monitoring. All due to money issues as the CCG is currently £16.7m in the red.
The chairman of the CCG works 2 days at his surgery and 3 days at the CCG. His CCG pay was increased by 4% and is now £130,000 a year. No point the government handing out another £500m as we wont see it.
In just over a week I am telling my cancer story to a room full of health professionals including consultants, nurses, admin staff and cancer charity reps. Prostate Cancer UK is funding this effort to ensure the same level of service is provided throughout the country. I understand all of Wales has accepted this so progress is being made.
mp3manager said:
Well the dreaded F-word has been mentioned......Funding.
When I was diagnosed in 2017, I received funding from the 2017 NHS Scotland budget, which it seems is not indefinite.
The cetuximab is my main cancer drug which I receive through a Hickman Line but as mentioned in previous posts, after a year's treatment the side-effects are starting to take its toll, namely osteoporosis, which has weakened my spine and put me into a wheelchair.
The doctors suggested zoledronic acid which can help strengthen the bones but due to funding, I can only have it once per year. Ok, that's unfortunate but not a disaster. So I had a dose of that which took only 15 minutes.
The doctor's also suggested taking a break from chemo, which I was intending to do, so I could rebuild my strength and come back to chemo fitter and stronger. We asked the question, can I get back onto the same treatment after the break? No problem they said.
A few weeks later, we were arranging the dates to come off chemo and the doctor piped up, 'But you won't get back onto cetuximab or the HL due to funding but we do have other treatments available.
Now I was pretty insistent and clear on my questions but I'm not wanting to get into the blame game but it's pretty unfair for the doctors to suggest a break, knowing full well, there would be a change in treatment due to funding and I wouldn't be on the most effective drugs.
I also understand that their hands are tied, it's not their fault. I'm sure if they could they would put everyone on the best and most effective treatment and screw the cost.
But it does feel like a slap in the face and it's two steps forwards and three back.
I live on my own in my own property on the first floor and it's not wheelchair friendly, so have been looking into being rehoused by the local council. And all this costs money, as the kitchen would need to be made wheelchair friendly, as would the bathroom and bedroom.
I just think, if somebody took a step back and looked at the Big Picture of the cost to the taxpayer of rehousing me, providing a carer etc, compared to keeping the funding of the chemo drugs, which I feel would definitely be the most prudent choice overall.
But hey, what do I know?
Let us know how things progress. When I was diagnosed in 2017, I received funding from the 2017 NHS Scotland budget, which it seems is not indefinite.
The cetuximab is my main cancer drug which I receive through a Hickman Line but as mentioned in previous posts, after a year's treatment the side-effects are starting to take its toll, namely osteoporosis, which has weakened my spine and put me into a wheelchair.
The doctors suggested zoledronic acid which can help strengthen the bones but due to funding, I can only have it once per year. Ok, that's unfortunate but not a disaster. So I had a dose of that which took only 15 minutes.
The doctor's also suggested taking a break from chemo, which I was intending to do, so I could rebuild my strength and come back to chemo fitter and stronger. We asked the question, can I get back onto the same treatment after the break? No problem they said.
A few weeks later, we were arranging the dates to come off chemo and the doctor piped up, 'But you won't get back onto cetuximab or the HL due to funding but we do have other treatments available.
Now I was pretty insistent and clear on my questions but I'm not wanting to get into the blame game but it's pretty unfair for the doctors to suggest a break, knowing full well, there would be a change in treatment due to funding and I wouldn't be on the most effective drugs.
I also understand that their hands are tied, it's not their fault. I'm sure if they could they would put everyone on the best and most effective treatment and screw the cost.
But it does feel like a slap in the face and it's two steps forwards and three back.
I live on my own in my own property on the first floor and it's not wheelchair friendly, so have been looking into being rehoused by the local council. And all this costs money, as the kitchen would need to be made wheelchair friendly, as would the bathroom and bedroom.
I just think, if somebody took a step back and looked at the Big Picture of the cost to the taxpayer of rehousing me, providing a carer etc, compared to keeping the funding of the chemo drugs, which I feel would definitely be the most prudent choice overall.
But hey, what do I know?
Edited by mp3manager on Tuesday 18th September 23:44
mp3manager said:
Stan the Bat said:
Let us know how things progress.
Thanks. If anyone else has had problems with the funding of their cancer treatment on the NHS, I'd be interested in hearing your experiences.
Decreasing colonoscopy frequency.
I am assuming due to financial reasons.
Stan the Bat said:
Just as my post further up the page.
PCoulson said:
Thanks for the suggestion but that's not my type of thing, although I do understand the reasons why people would use that method.Like all good PHer's, I do have savings and own my property outright which could be sold easily, so that gives me option of paying for my own treatment.
I had my appointment with the colorectal surgeon after my 1 year post-surgery colonoscopy.
The protocol used to be colonoscopy at 1 and 3 years post surgery.
It is now at 1 and 4 years.
His explanation did not mention cost.
He said that the as the one year is completely clear and given the slow growth of any future cancer that a 3 year gap is appropriate - given that I will additionally have an annual scan and blood test. Also mentioned that each colonoscopy is not without risk (eg tear/puncture).
If the scan or blood test shows any reason for concern, an earlier colonoscopy may be introduced.
Not sure how I feel about the gap but I'll leave things for now and at a push if I feel I want an additional colonoscopy I'll consider self funding if necessary.
The protocol used to be colonoscopy at 1 and 3 years post surgery.
It is now at 1 and 4 years.
His explanation did not mention cost.
He said that the as the one year is completely clear and given the slow growth of any future cancer that a 3 year gap is appropriate - given that I will additionally have an annual scan and blood test. Also mentioned that each colonoscopy is not without risk (eg tear/puncture).
If the scan or blood test shows any reason for concern, an earlier colonoscopy may be introduced.
Not sure how I feel about the gap but I'll leave things for now and at a push if I feel I want an additional colonoscopy I'll consider self funding if necessary.
sas62 said:
I had my appointment with the colorectal surgeon after my 1 year post-surgery colonoscopy.
The protocol used to be colonoscopy at 1 and 3 years post surgery.
It is now at 1 and 4 years.
His explanation did not mention cost.
He said that the as the one year is completely clear and given the slow growth of any future cancer that a 3 year gap is appropriate - given that I will additionally have an annual scan and blood test. Also mentioned that each colonoscopy is not without risk (eg tear/puncture).
If the scan or blood test shows any reason for concern, an earlier colonoscopy may be introduced.
Not sure how I feel about the gap but I'll leave things for now and at a push if I feel I want an additional colonoscopy I'll consider self funding if necessary.
If you have a faecal occult blood test (poo sticks as I call it) every year that should cover the gaps.The protocol used to be colonoscopy at 1 and 3 years post surgery.
It is now at 1 and 4 years.
His explanation did not mention cost.
He said that the as the one year is completely clear and given the slow growth of any future cancer that a 3 year gap is appropriate - given that I will additionally have an annual scan and blood test. Also mentioned that each colonoscopy is not without risk (eg tear/puncture).
If the scan or blood test shows any reason for concern, an earlier colonoscopy may be introduced.
Not sure how I feel about the gap but I'll leave things for now and at a push if I feel I want an additional colonoscopy I'll consider self funding if necessary.
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