Please be aware: This patient story describes a terminal liver cancer diagnosis
Forty years ago Alastair received contaminated blood following a road traffic accident overseas. He was diagnosed with hepatitis C and took part in a variety of medical trials and treatments over the intervening years. He was diagnosed with liver cancer in November 2023. Thank you for sharing your story, Alastair
On 24th April 1981 I was working overseas when the vehicle I was being driven in was involved in a road traffic accident. The vehicle flipped five times and I was flipped out of the car and ended up underneath the back wheel. I punctured a lung, broke my collarbone and pelvis and had a huge burn across my back. I was in hospital for five weeks before being flown back to the UK on a stretcher. While the UK hospital was preparing me for a skin graft, they realised I’d received contaminated blood overseas and I was diagnosed with a hepatitis virus which was later confirmed as hepatitis C. I was told I would probably have problems in about 30 years’ time.
I took up a legal case, but it was thrown out by the court – it was hard to know who to sue as there were so many different offices involved in my employment.
Over the years I was monitored by the NHS and went through all the medical trials, including Interferon and Ribavirin, as they tried to figure out how to control hepatitis C. I understand the treatment now is a three-month course of pills, but when I was going through it I had to inject myself in the stomach for a year at a time. Eventually Boceprevir got rid of the hepatitis C but my immune system was down to zero a lot of that time.
Elevated cancer risk
The decline in my liver was very gradual over the next 30 years and I was always open with my employers about the hepatitis C and how I got it. However, the acceptance was not great and they weren’t particularly sympathetic when I had to take time off for treatment.
Because there was an elevated risk of me getting liver cancer, I received liver scans every six months so it could be spotted early and treated. In 2022 I was told I would probably live another 20 years, but then everything changed. A cancer nodule was discovered on my liver in November 2023 and I went through an ablation where they basically burn the nodule out, but it had grown quite a bit. The ablation was successful, however in the meantime I developed secondary cancers. I was expecting to get chemotherapy, but because the cirrhosis has caused problems with the blood supply (thrombosis) to the superior mesenteric vein and the portal vein, they had to keep my blood diluted with anticoagulant medication. Chemotherapy starves oxygen to the tumour and it kills it off, but it can’t do that if the blood’s thinner. The portal vein has not improved with anti-coagulation however the doctors don’t want to risk clots moving.
I’m now starting immunotherapy (Atezolizumab (HCC)) which won’t cure the cancer just delay everything by a month or two.
I was able to do fairly physical stuff until January 2024, but it’s gone downhill rapidly since then. In July 2024 the oncologist told me in a very matter-of-fact way that I had six to nine months (median). I’d been expecting it for 40 years, so it wasn’t a particular surprise – my wife was more shocked than I was. I’m now starting immunotherapy (Atezolizumab (HCC)) which won’t cure the cancer just delay everything by a month or two, although I don’t know if it’s six months from the start of the immunotherapy or six months from when the oncologist spoke to me.
I’m not in pain and, apart from lack of energy, I don’t have any symptoms. However, because I’ve got poor circulation and my blood is thin, if I walk too far my ankles swell up and my feet hurt so I lie in a reclining chair and watch telly.
NHS monitoring
The NHS has been very good – they’ve been monitoring me for over 40 years and have done what they can. Worrying about it won’t change anything, so I just deal with it. I’m now sorting out all the ‘sadmin’ as they call it including Macmillan nurses and have also registered with a hospice. My wife and I have been offered counselling, but it’s not required yet.
I was infected with hepatitis C through contaminated blood and didn’t know I had it until I had a blood test, but it’s important that people who use drugs intravenously are aware they can get it from sharing needles too. I would urge everyone who suspects they might be concerned to get checked out as soon as possible. Then at least you’re in the queue to get it diagnosed and be treated.
I’ve spent a lot of time on a liver ward and many patients are there because of alcohol use. Alcohol is a social thing and it’s everywhere on television, but if people spent a day on a liver ward it would be such a wake-up call and they would never touch alcohol again. The same can be said about non-prescription drugs.