David was diagnosed with liver cancer during the COVID-19 pandemic. He had TACE therapy and SBRT treatment, and had a liver transplant in 2023. Thank you for sharing your story, David.
My story began on Burns Night 2020. I’d had a nice evening with friends but suddenly had terrible stomach pains. I went to A&E where the doctors suspected kidney stones and sent me to see my GP who arranged a scan. It didn’t show any kidney stones. Then Covid 19 hit and my further tests were delayed, but I was still in pain so went back to my GP who arranged another scan and this time it revealed a tumour on my liver. The doctors realised it had been there in my first scan too, but luckily it hadn’t grown. I was diagnosed with alcohol-related cirrhosis and primary liver cancer (HCC) in August 2020.
Most of the consultants I’ve spoken said I wasn’t the typical size or shape of someone who was alcohol addicted with liver cirrhosis. I’m 11 stone nothing and had no real swelling of the stomach. I never woke up wanting a drink and didn’t chase one, but after a hectic day at work I’d come home, have a drink of wine, then usually finish the bottle off.
Following my diagnosis, I was shocked to hear I was also perfect for the liver transplant list so I had a bit of a panic attack. Because of my extensive cardiac history, they thought I was having a heart attack and kept me in, but thankfully it wasn’t that. However, they were obviously very concerned about my heart so I had to go through various tests before eventually being signed off by three cardiologists and placed on the transplant list. I was told I’d need a very good quality liver to not put too much stress on my body during surgery.
I had regular tests, scans and check-ups with my multidisciplinary team, but found it frustrating that my cardiology, gastro, cancer and radiography appointments were are all in different hospitals. Because they weren’t joined up electronically, they couldn’t share my full medical records with each other which could lead to unnecessary delays. As a result, I took my own records with me to every appointment.
Until a donor was found I had a number of procedures which successfully controlled the tumour. The TACE (transarterial chemoemobilisation) therapy was painless and actually quite interesting because I could watch what the doctors were doing in real time on TV! I also had SBRT (stereotactic body radiation) therapy over ten days in London. Because it was during Covid I had to stay on my own in a hotel owned by Macmillan and then make my way to UCLH every two days to be locked down on a bed for the treatment. That was very difficult for me and I was put in touch with a psychiatrist, but I don’t think it helped at all. I’m a fairly positive and strong-willed character and got over it myself really – I just needed to be away from it all for a while.
I was lucky that I found a support group who offer cancer patients a day’s fly fishing with some of the best guides in the country. Fly fishing is a solitary pursuit and allows you to get things into perspective and move forward. It was brilliant and I really am very grateful to them for that.
A couple of years later all the MRI scans were showing that the tumour was inactive and after 850 days on the transplant list I was expecting to be taken off it. Then I took a call from my consultant at Bournemouth saying that the most recent MRI showed three new tumours. In August 2023 I had another TAE procedure to cut off the blood supply to the tumour but five weeks later I got the call to say that they’d got a donor liver for me. I was ‘blue lighted’ up to London but that organ was found to be unacceptable and I thought I was coming home, but later that day they another became available and they transplanted me on 30th September – on a weekend.
There was very little pain after my liver transplant and my surgeon was very pleased.
I was in intensive care for just one day after the transplant before being moved onto the ward. There was very little pain, the only issue I had was the tightness of the staples as they tend to pull you in which makes life very uncomfortable. Getting a position to go to sleep was stressful and I didn’t sleep well for quite some time. Otherwise, the regular routine of the consultants coming round every morning and evening followed by the pharmacist and all the different bodies was very good. My surgeon came every other day to see how I was doing and everyone was very pleased with the numbers from the twice-daily blood tests. A team of physiotherapists came round the second day after the operation and gave me various exercises to do with the aim of getting me out of bed as quickly as possible. Soon I was wandering up and down and found a little unit that had three stairs up and three down – I found it all really easy.
The ward had people with lots of different liver conditions who were interesting to talk to as well. I suggested the British Liver Trust’s website to a couple of guys there and told them that they could learn a lot from it. They found it very useful.
I had been going back up to the Royal Free for blood tests and consultations every Tuesday and had nothing but positive news, so have now been signed off the Royal Free and back down to Bournemouth again. I couldn’t be happier.
The only concern I had was the volume of tablets I had to take and the decision to stop all of my pre-operation tablets in favour of the anti-rejection medication. They control my heart and diabetes and it took longer to resolve between my GP, the Royal Free and Bournemouth than I would have hoped because they aren’t fully connected up properly. The lack of continuity between NHS hospitals and their electronic systems is getting better, but it’s still not perfect. I keep being told it’s too big for one system, but it seems to work for the taxman.
I’ve been told I will get details of who the donor was, but I don’t dwell on that. I’d now like to get back to some sort of normality of exercise. I’ve lost 8 kilos, most of which seems to be muscle so I’d like to build that up again and get back to gardening, playing badminton and looking after my bees. Also, my parents are both 94 and live in County Durham and I want to get up to see them as quickly as I can. My mother is very old school and wrote to the hospital thanking them.
Nobody fights cancer, you just go with the flow, do your best and follow the best advice you can. I benefitted from fantastic teams at Bournemouth and the Royal Free in London. They never hid anything from me and I can do nothing but praise them for their thoroughness and the speed at which they pushed everything through when things became critical for me.