Please be aware: This patient story describes a terminal liver cancer diagnosis
Graham was diagnosed with non-alcohol related cirrhosis following a routine health check-up. Unfortunately cancer was later discovered in a lesion in his liver and grew to a size that made him ineligible for a transplant. Now Graham is passionate about raising awareness of the impact that salt, fat, sugar and alcohol can have on the liver. Thank you for sharing your story, Graham
I had a routine MOT with my GP in July 2020, which showed an issue with my liver function test. As it would be about five months before I could see someone on the NHS about it, I decided to see a consultant privately. After an MRI and endoscopy he diagnosed me with non-alcohol related cirrhosis. I was prescribed a beta blocker which I’ve stayed on throughout. The consultant added me to his patient list and from then on, he saw me on the NHS.
He talked about diet as a possible cause. I spent most of my working life sitting in a chair and lived on my own after 2001, so I ate a lot processed meals because they are quick to heat up. I don’t know if this was the only cause but I’m sure it played a big part.
I was put on water tablets in early 2022 and everything went well until Christmas that year when my liver got out of its box and the amount of fluid in my abdomen suddenly became extreme. My consultant admitted me to the liver ward at St George’s in Tooting where they drained 17 litres of fluid out of my abdomen over two days. I was in there for quite a while to stabilise my condition and improve my balance. I was put forward for a transplant at King’s and went for 3 days of tests in mid-March 2022. Having passed these I was put on the list in mid-April 2022. I had only been on it about 20 hours when I got a call saying there was a liver for me. I was prepped for the operating theatre, but then told there was a patient who would die if he didn’t get the liver I was supposed to have. That was a no brainer – I consented to it.
Cancer had grown
I was then called in a further seven times, but each time the donor liver was too fatty (a major and growing problem in the UK). It was annoying to say the least, especially when in February 2024 I got a call from a consultant at King’s saying it was bad news. The cancer which had been found in 2023 in a lesion in my liver had suddenly grown to the extent that I could no longer have a transplant. Chemo and radiotherapy could not be applied as they would likely damage my liver further. I asked about other treatments but was told there weren’t any. So it would be a question of managing the situation.
In March 2024 my consultant told me that in his experience, I had six months left to live, which was a shock, but he said I shouldn’t hold him to that. I asked what was likely to happen and he said there were a range of scenarios, but as none of them are any good I chose not to think about that and live life as best as I could. He suggested I should register with the local hospice so it would be ready if and when I needed it. I was also advised not to drive as the drugs may affect the speed of my reactions. I dealt with both matters and have an assigned hospice nurse and sold my car.(Now that IS a big step!)
I take a host of medicines, the major one is the water tablets. We’ve upped that to the extent that it could do some damage to my kidneys, but at this stage my consultant feels we should tolerate that. The other key medication is an antibiotic for hepatic encephalopathy – without it the brain fog returns very quickly
I’m very philosophical about life, though of course I have dark days, but I believe you get dealt a hand of cards which you play as best you can. Another hand is then dealt and you continue to do the best with it. And so it goes. It’s been more difficult for my family and friends. They were as shocked as I was and didn’t know what to say. I told them not to worry because there is nothing that could be said. I have visited my brother, school friends, people I worked with and a social at my rugby club. All have been fantastically supportive.
I haven’t had any pain – the main remaining issues are swollen legs, under-skin itching and restless legs which wake me up at night. I take a whole host of medicines, the major one is the water tablets – we’ve upped that to the extent that it could do some damage to my kidneys, but at this stage my consultant feels we should tolerate that and it’s had a good effect on my legs. The other key medication antibiotic for brain fog – without it the fog returns very quickly.
Prevention is key
Prevention is the key to reducing cirrhosis in the next generation. This generation is lost. People should cook from scratch and be taught that in school. Action needs to be taken now because diabetes and liver disease are making huge and ever-growing demands on the NHS. Governments have failed to take on the processed food manufacturers. I believe they need to tell them that 20% tax will be applied if their food goes over a certain amount of salt, fat and sugar content. I also believe a 100% tax should also be phased in on all confectionery as well as alcohol sales outside of licensed premises.
Exercise is also very important and not just for your body. I find I’m in a much better mood if I get out and do something. The weather is nice now, but make sure you also have something to do when winter approaches and spend more time in the house.
I thought I was fit so didn’t go to my GP for years. Then this NASH reared its ugly head. So, change your diet and take more exercise. Don’t wait till you end up in hospital because that will often prove to be too late.