Hi Everyone,
Please bear with me through a strange and long post but hopefully one that can help others, be it now or in the future.
Over here in Oz anyone over 50 gets sent a testing kit for bowel cancer every two years. I believe that something similar also exists in the UK but has only recently been made available to a similar age group. Like many men I have never been the quickest to seek medical advice or assistance so when my kit arrived in Oct/Nov of 2020 it got filed in a chest of drawers or something to do later place. My wife did remind me on a number of occasions that I should complete the samples and send them off but this fell on deaf ears. Luckily she nagged long and hard enough that I eventually succumbed and posted it off.
I think it was in December that I received a letter telling me that blood had been detected in my samples and that I should arrange for a colonoscopy as soon as possible. Having had ‘Farmer Giles’ more than once over the years I was not too worried but arranged for a procedure to be carried out in January 2021. When I went to the clinic I was sedated and really knew nothing of the procedure until I came round. I did notice that other folk were discharged quite promptly whereas I was asked to wait to see a doctor/medical person for a chat. I realised that all was not well. I was informed that there was a tumour, and that a biopsy had been taken to be examined. I was then referred to a public hospital in my area to await the results.
Within just a few weeks I attended the hospital to be informed that it was malignant and would need treating (anything from chemotherapy to surgery and other options in between). The next step was a scan or two to discover exact size and location and await more results. By now I was obviously more than slightly concerned. Another couple of weeks pass and I have an appointment with the specialists which rocked my world. The tumour in my bowel was operable but there was another problem, the scans had revealed a shadow on my liver, it appeared the cancer had already spread and therefore I was Stage 4. It had become a case of when, not if, it would get me. I was devastated. Now I needed to have more tests and biopsies to see how best to treat me and hopefully prolong my life.
Once these were completed a chink of light appeared, a ray of hope. It turned out that my bowel cancer had not spread, but that I had an entirely separate primary cancer on my liver. Whilst not exactly a bonus it meant that hopefully cancer cells were not running freely about my body infecting wherever they fancied. I was told that I also had cirrhosis on my liver and it was this that had turned cancerous. I was told that this had been caused by a condition called hemochromotosis which is the exact polar opposite of anaemia, my body could not process iron and I was full of the stuff. It is a slightly rare hereditary condition that has to be passed onto you via the genes of both of your parents, even then it does not always become active. At this point I could have hidden behind this explanation, but the reality was that I had enjoyed rather a lot of wine over the years so that was at least equally to blame for the cirrhosis.
I was now told that the liver cancer was more concerning so this needed to be brought under control before anything could be done about my bowel problems. To say I was overwhelmed would be an understatement. The treatment for my liver was to be a procedure called T.A.C.E., (trans arterial chemo embolisation), actually not as scary as it sounds but bloody clever. Under general anaesthetic a line/camera/tools would be inserted into my groin artery and used to tie off the blood vessel either side of my liver tumour and then pump it full of chemo drugs. This was an overnight stay and whilst not pleasant it did not make me seriously ill for days on end rather just nauseous on the day and tired for a week. A few weeks later more scans revealed it had been reasonably successful but a couple of ‘spots’ remained. The answer now was to go up through the groin again with a laser to burn off the spots. Duly done a couple of weeks later.
Now for my bowel. The tumour was quite large but could be removed via surgery, the only major risk being that I could be left with a ‘stoma’ bag. The operation was carried out in late 2021, with a week in hospital and 5 or 6 weeks off work and no ‘stoma’! So far, so good in my book. But I still had the cirrhosis on my liver and that was not going away on its own.
The plan now in 2022 was to try a new drug that had been showing promise in stopping new tumours growing in the liver. It was a form of immunotherapy delivered via a drip. One day every three weeks I attended hospital as an out patient to have these drugs pumped into me over about three hours. Painless really but it did leave me tired for a couple of days. I was also undergoing a procedure called venesection ( removal of a pint of my blood) every three weeks to try and get my iron levels down to a more normal level. Annoyingly, regular scans revealed that my liver kept throwing up new small tumours which needed treating either by T.A.C.E. or laser. The hope was that these would lessen as time went by but this did not happen.
By late 2023 it was decided that the immunotherapy was not going to offer a permanent solution. The only way to get rid of this cancer would be have a liver transplant, which to me brought up the thoughts of waiting lists and serious risks etc.. There were other problems too. Having been on immunotherapy for two years my body would not accept a ‘foreign’ organ for some time. This meant dropping the drugs and hoping that the cancer did not go into overdrive. The next few months saw me receiving T.A.C.E. again, in fact on one occasion I had to go back a second time as the new tumour had grown more than expected. By July 2024 I was deemed to have been off the immunotherapy long enough to go onto the transplant waiting list. But another hurdle had to be overcome, I had to be deemed strong enough to survive the transplant. I had a whole week of tests both medical, physical and spiritual to ascertain my suitability. I can honestly say that one of the most weird experiences of my life is laying perfectly still on a bed whilst chemicals were used to make my heart race to a level where I thought it was about to jump out of my chest! Luckily I passed the checks with flying colours and was added to the waiting list in August last year.
Within a few weeks I had a call to get to the hospital ASAP as an organ was hopefully available. My wife drove to the hospital late on a Saturday night and under advice from doctors went home. I had scans and tests until the early hours and then settled down to try and get some sleep. In the morning I woke to be told that sadly the liver was unsuitable. Damn. A week later I had almost an exact repeat run. Things then went quiet for a few weeks until I was informed that scans had shown up an anomaly that needed to be checked. Until this was done I was to be removed from the transplant list, I was shitting myself by now. I was admitted to get my belly opened up to check the blood vessels supplying the liver. Bad cells were found but they could be removed with a transplant if it all went ahead. I was back on the list!
By now I was hoping a call would come as quickly as before, but it did not. As we approached Xmas we felt sure it would be disrupted by a call but none came. To be honest I was beginning to lose my positivity, I had dodgy cells on one of the blood vessels, I had no drugs holding any cancer back, and a transplant was not happening quickly it seemed.
Fast forward to NYE 2024 and we were watching TV with Robbie Williams performing at the Sydney Harbour Bridge celebrations. The call came, get here safely when you can. We watched the fireworks launched from the Bridge and drove to the hospital. The next morning, New Years Day, at around 11am I went down to theatre for surgery. The next paragraph or two may not be entirely accurate as I am using my memories that were addled with sedatives, painkillers and many other mind altering substances which not only knocked me out but also have affected my ability to be confident in my recollections of the days following the procedure.
I was in theatre for around 12 hours, with my wife given updates via phone every couple of hours. My own disease ridden liver was removed along with the dodgy blood vessel and a donor organ ‘installed’. I was expected to spend the next couple of days in ICU but this was extended to around a week as my kidneys seemed to go into shock and I almost suffered complete renal failure. I can honestly say tha my mind wandered from lucidity to stupidity, from compos mentis to away with the fairies. There were a couple of occasions when I really believed that I was not going to make it through and had to come to terms with that emotion. There were days my wife would visit for hours with me just asleep and I later accused her of not being there! Jeez, it must have been tough for her. I had dreams of bad people I had met in my life and of thoughts of them now coming to get me, from the UK! Night time was the worst when my mind would have too much time and silence to do whatever and go wherever it fancied.
After a week in my own room with seemingly slow recovery I was moved to a normal ward bed and things seemed to pick up rapidly. After 24 hours I was out of bed and taking a few steps, another day or so and I was showering on my own. My kidneys were beginning to respond and I was soon doing a few laps of the floor. I was watching Albion games on my iPad in the middle of the night, and amusing myself with expensive internet shopping. I had earlier been told to expect a three week stay in hospital, I was now 10 days in and very bored. Positive noises were being made by doctors about going home but nothing happened quickly. Suddenly I got the go ahead and was released home on the 15th January.
Since then I have been attending hospital twice a week to begin, with accompanying blood tests. I am now having blood tests weekly and going to hospital once a fortnight. I am hoping to get the go ahead to drive again in the next few days. I am taking upwards of 30 tablets a day but this is constantly being adjusted and should go downwards with time. I partake in physio twice a week and my strength and energy are returning. I expect to be work ready in about three months time. I feel optimistic and very, very lucky to be here.
Now back to my reasons for posting this.
Firstly, don’t be like me and avoid the medical profession. I had noticed my poo movements had changed long before I did the bowel cancer test, I just did not want to address it.
I had also been told about high iron levels in the past but without any explanation about what it might mean. Ask.
Be honest with yourself, I knew my wine drinking was not good for me.
The medical industry are so close to breaking the cancer code that it is no longer the death sentence that we all fear. Many are curable, more are controllable.
My other point is my astonishment and utter gratefulness for a public health system here in Aus that is so different to the NHS. Yes there is a private system running alongside the taxpayer funded one, but when the serious shit happens you get EXACTLY the same treatment. I guesstimate at forty to fifty scans over four years of all kinds, MRI, CT, Ultrasound etc etc.. Other than pre planned routine ones I never waited much more than a couple of weeks. If I had been needing non life saving treatment I may have had to have been more patient but that is what private healthcare is for, queue jumping, as you are paying twice and saving the system money. All of this started as Covid-19 was causing chaos across the planet and in healthcare particularly. I have never had to wait more than three days for a GP appointment and that is in the public sector, I hear stories from friends of waits of multiple weeks in the UK.
The NHS was a magnificent creation in the 1950s, but times have changed. I have no doubt that if I had not emigrated in 2017 that I would have died from one cancer or the other, almost certainly because of waiting times.
Overall I honestly feel extraordinarily lucky to have got through all this, and wish everyone else on a similar journey the greatest treatment and luck possible. I have already tried to use my extra time to be less negative about life, and will also be trying to contribute back via donations and hopefully my actions too. But I really would recommend that the NHS needs a rebuild from the ground up, probably with the need to override the vested interests of some of those working within it.
If anybody on here is themself partaking in some form of health challenge involving cancer, or someone they love is doing so, then please feel free to ask about my experiences. I will do all that I can to pass on relevant info to you. I am now on an ever slowing merry go round of check ups, blood tests, and scans but just happy to still be here.
Please bear with me through a strange and long post but hopefully one that can help others, be it now or in the future.
Over here in Oz anyone over 50 gets sent a testing kit for bowel cancer every two years. I believe that something similar also exists in the UK but has only recently been made available to a similar age group. Like many men I have never been the quickest to seek medical advice or assistance so when my kit arrived in Oct/Nov of 2020 it got filed in a chest of drawers or something to do later place. My wife did remind me on a number of occasions that I should complete the samples and send them off but this fell on deaf ears. Luckily she nagged long and hard enough that I eventually succumbed and posted it off.
I think it was in December that I received a letter telling me that blood had been detected in my samples and that I should arrange for a colonoscopy as soon as possible. Having had ‘Farmer Giles’ more than once over the years I was not too worried but arranged for a procedure to be carried out in January 2021. When I went to the clinic I was sedated and really knew nothing of the procedure until I came round. I did notice that other folk were discharged quite promptly whereas I was asked to wait to see a doctor/medical person for a chat. I realised that all was not well. I was informed that there was a tumour, and that a biopsy had been taken to be examined. I was then referred to a public hospital in my area to await the results.
Within just a few weeks I attended the hospital to be informed that it was malignant and would need treating (anything from chemotherapy to surgery and other options in between). The next step was a scan or two to discover exact size and location and await more results. By now I was obviously more than slightly concerned. Another couple of weeks pass and I have an appointment with the specialists which rocked my world. The tumour in my bowel was operable but there was another problem, the scans had revealed a shadow on my liver, it appeared the cancer had already spread and therefore I was Stage 4. It had become a case of when, not if, it would get me. I was devastated. Now I needed to have more tests and biopsies to see how best to treat me and hopefully prolong my life.
Once these were completed a chink of light appeared, a ray of hope. It turned out that my bowel cancer had not spread, but that I had an entirely separate primary cancer on my liver. Whilst not exactly a bonus it meant that hopefully cancer cells were not running freely about my body infecting wherever they fancied. I was told that I also had cirrhosis on my liver and it was this that had turned cancerous. I was told that this had been caused by a condition called hemochromotosis which is the exact polar opposite of anaemia, my body could not process iron and I was full of the stuff. It is a slightly rare hereditary condition that has to be passed onto you via the genes of both of your parents, even then it does not always become active. At this point I could have hidden behind this explanation, but the reality was that I had enjoyed rather a lot of wine over the years so that was at least equally to blame for the cirrhosis.
I was now told that the liver cancer was more concerning so this needed to be brought under control before anything could be done about my bowel problems. To say I was overwhelmed would be an understatement. The treatment for my liver was to be a procedure called T.A.C.E., (trans arterial chemo embolisation), actually not as scary as it sounds but bloody clever. Under general anaesthetic a line/camera/tools would be inserted into my groin artery and used to tie off the blood vessel either side of my liver tumour and then pump it full of chemo drugs. This was an overnight stay and whilst not pleasant it did not make me seriously ill for days on end rather just nauseous on the day and tired for a week. A few weeks later more scans revealed it had been reasonably successful but a couple of ‘spots’ remained. The answer now was to go up through the groin again with a laser to burn off the spots. Duly done a couple of weeks later.
Now for my bowel. The tumour was quite large but could be removed via surgery, the only major risk being that I could be left with a ‘stoma’ bag. The operation was carried out in late 2021, with a week in hospital and 5 or 6 weeks off work and no ‘stoma’! So far, so good in my book. But I still had the cirrhosis on my liver and that was not going away on its own.
The plan now in 2022 was to try a new drug that had been showing promise in stopping new tumours growing in the liver. It was a form of immunotherapy delivered via a drip. One day every three weeks I attended hospital as an out patient to have these drugs pumped into me over about three hours. Painless really but it did leave me tired for a couple of days. I was also undergoing a procedure called venesection ( removal of a pint of my blood) every three weeks to try and get my iron levels down to a more normal level. Annoyingly, regular scans revealed that my liver kept throwing up new small tumours which needed treating either by T.A.C.E. or laser. The hope was that these would lessen as time went by but this did not happen.
By late 2023 it was decided that the immunotherapy was not going to offer a permanent solution. The only way to get rid of this cancer would be have a liver transplant, which to me brought up the thoughts of waiting lists and serious risks etc.. There were other problems too. Having been on immunotherapy for two years my body would not accept a ‘foreign’ organ for some time. This meant dropping the drugs and hoping that the cancer did not go into overdrive. The next few months saw me receiving T.A.C.E. again, in fact on one occasion I had to go back a second time as the new tumour had grown more than expected. By July 2024 I was deemed to have been off the immunotherapy long enough to go onto the transplant waiting list. But another hurdle had to be overcome, I had to be deemed strong enough to survive the transplant. I had a whole week of tests both medical, physical and spiritual to ascertain my suitability. I can honestly say that one of the most weird experiences of my life is laying perfectly still on a bed whilst chemicals were used to make my heart race to a level where I thought it was about to jump out of my chest! Luckily I passed the checks with flying colours and was added to the waiting list in August last year.
Within a few weeks I had a call to get to the hospital ASAP as an organ was hopefully available. My wife drove to the hospital late on a Saturday night and under advice from doctors went home. I had scans and tests until the early hours and then settled down to try and get some sleep. In the morning I woke to be told that sadly the liver was unsuitable. Damn. A week later I had almost an exact repeat run. Things then went quiet for a few weeks until I was informed that scans had shown up an anomaly that needed to be checked. Until this was done I was to be removed from the transplant list, I was shitting myself by now. I was admitted to get my belly opened up to check the blood vessels supplying the liver. Bad cells were found but they could be removed with a transplant if it all went ahead. I was back on the list!
By now I was hoping a call would come as quickly as before, but it did not. As we approached Xmas we felt sure it would be disrupted by a call but none came. To be honest I was beginning to lose my positivity, I had dodgy cells on one of the blood vessels, I had no drugs holding any cancer back, and a transplant was not happening quickly it seemed.
Fast forward to NYE 2024 and we were watching TV with Robbie Williams performing at the Sydney Harbour Bridge celebrations. The call came, get here safely when you can. We watched the fireworks launched from the Bridge and drove to the hospital. The next morning, New Years Day, at around 11am I went down to theatre for surgery. The next paragraph or two may not be entirely accurate as I am using my memories that were addled with sedatives, painkillers and many other mind altering substances which not only knocked me out but also have affected my ability to be confident in my recollections of the days following the procedure.
I was in theatre for around 12 hours, with my wife given updates via phone every couple of hours. My own disease ridden liver was removed along with the dodgy blood vessel and a donor organ ‘installed’. I was expected to spend the next couple of days in ICU but this was extended to around a week as my kidneys seemed to go into shock and I almost suffered complete renal failure. I can honestly say tha my mind wandered from lucidity to stupidity, from compos mentis to away with the fairies. There were a couple of occasions when I really believed that I was not going to make it through and had to come to terms with that emotion. There were days my wife would visit for hours with me just asleep and I later accused her of not being there! Jeez, it must have been tough for her. I had dreams of bad people I had met in my life and of thoughts of them now coming to get me, from the UK! Night time was the worst when my mind would have too much time and silence to do whatever and go wherever it fancied.
After a week in my own room with seemingly slow recovery I was moved to a normal ward bed and things seemed to pick up rapidly. After 24 hours I was out of bed and taking a few steps, another day or so and I was showering on my own. My kidneys were beginning to respond and I was soon doing a few laps of the floor. I was watching Albion games on my iPad in the middle of the night, and amusing myself with expensive internet shopping. I had earlier been told to expect a three week stay in hospital, I was now 10 days in and very bored. Positive noises were being made by doctors about going home but nothing happened quickly. Suddenly I got the go ahead and was released home on the 15th January.
Since then I have been attending hospital twice a week to begin, with accompanying blood tests. I am now having blood tests weekly and going to hospital once a fortnight. I am hoping to get the go ahead to drive again in the next few days. I am taking upwards of 30 tablets a day but this is constantly being adjusted and should go downwards with time. I partake in physio twice a week and my strength and energy are returning. I expect to be work ready in about three months time. I feel optimistic and very, very lucky to be here.
Now back to my reasons for posting this.
Firstly, don’t be like me and avoid the medical profession. I had noticed my poo movements had changed long before I did the bowel cancer test, I just did not want to address it.
I had also been told about high iron levels in the past but without any explanation about what it might mean. Ask.
Be honest with yourself, I knew my wine drinking was not good for me.
The medical industry are so close to breaking the cancer code that it is no longer the death sentence that we all fear. Many are curable, more are controllable.
My other point is my astonishment and utter gratefulness for a public health system here in Aus that is so different to the NHS. Yes there is a private system running alongside the taxpayer funded one, but when the serious shit happens you get EXACTLY the same treatment. I guesstimate at forty to fifty scans over four years of all kinds, MRI, CT, Ultrasound etc etc.. Other than pre planned routine ones I never waited much more than a couple of weeks. If I had been needing non life saving treatment I may have had to have been more patient but that is what private healthcare is for, queue jumping, as you are paying twice and saving the system money. All of this started as Covid-19 was causing chaos across the planet and in healthcare particularly. I have never had to wait more than three days for a GP appointment and that is in the public sector, I hear stories from friends of waits of multiple weeks in the UK.
The NHS was a magnificent creation in the 1950s, but times have changed. I have no doubt that if I had not emigrated in 2017 that I would have died from one cancer or the other, almost certainly because of waiting times.
Overall I honestly feel extraordinarily lucky to have got through all this, and wish everyone else on a similar journey the greatest treatment and luck possible. I have already tried to use my extra time to be less negative about life, and will also be trying to contribute back via donations and hopefully my actions too. But I really would recommend that the NHS needs a rebuild from the ground up, probably with the need to override the vested interests of some of those working within it.
If anybody on here is themself partaking in some form of health challenge involving cancer, or someone they love is doing so, then please feel free to ask about my experiences. I will do all that I can to pass on relevant info to you. I am now on an ever slowing merry go round of check ups, blood tests, and scans but just happy to still be here.
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