Warning: This patient story describes a terminal liver cancer journey
Lynne’s late husband Les liked to exercise and wasn’t overweight, so the couple were shocked when he was diagnosed with stage 4 hepatocellular cancer. Despite extensive treatment, Les tragically died the day before Lynne’s birthday. Now she is taking one day at a time and is passionate about raising awareness of liver cancer. Thank you for sharing your story with us, Lynne
My husband Les was in the RAF mountain rescue team in Cyrus and Scotland, he was a very quiet man and liked the quiet life. We fostered children for over 22 years and would have been married 38 years on 29th June 2023.
When Les was diagnosed with type 2 diabetes about 20 years ago he managed it through diet and medication – he was a healthy bloke, wasn’t overweight and liked to exercise. There had never been any indication that he had liver disease until he went for a run-of-the-mill blood test and scan for his diabetes on Christmas Eve 2018. Then a CT scan found there was something wrong with his liver and when he went for a biopsy in February 2019 it was confirmed that he had stage 4 hepatocellular cancer.
It was a complete shock. I argued with the doctor, saying: “He can’t have cancer. Look at him, he’s fit as a flea!”
The doctor asked Les: “Are you an alcoholic?” and I said: “No, he’s not!” He looked at me and said: “Are you sure?” How dare he make that assumption?
The tumour on Les’ liver was in a really awkward place and they couldn’t get it out
The tumour was in a really awkward place and they couldn’t get it out. Les went on a clinical trial for an intravenous immunotherapy drug called Tislelizumab and had six cycles over three months. The side effects were nil and we hoped the tumour would shrink, but sadly it didn’t. The disease was progressing, so in October 2019 he went on sorafenib and had 13 cycles over a year. In the following April he had a CT scan which showed disease progression, so he went on to regorafenib in November 2020. The next scan in March a mixed response but stable. The treatment was interrupted in May 2021 because Les had a dental extraction. The CT scan showed stable liver lesions but progression of lung metastasis and he continued with the regorafenib. In July 21 a scan revealed there was some response within the lungs, stable liver tumours, but they stopped in August 22 because it (the medication?) was affecting Les’ white blood cells so he had to start having blood transfusions every three weeks.
We bought Les a reclining chair and a little scooter so he could go out and keep his independence for as long as he could. He never moaned and I think he had a high pain threshold, so he coped really well, but he was losing weight and getting him to eat anything was a real challenge. He’d been a real curry man, but he’d gone off it and suddenly hated mashed potato too, saying couldn’t stand the texture.
His brother came every day to see him and get Les to eat. I would beg him to eat too, but he would get angry sometimes and say: “Just leave me alone!”
By February 2023 Les was losing his mobility and had no strength in his legs. He had his last transfusion and wasn’t any better. The doctor said they would now call it a day and try to make him as comfortable as possible. I agreed, Les was in pain and we just did the best we could for him.
I called for an ambulance and they said Les was verging on sepsis. For God’s sake had we not gone through enough?
Then when Les’ sodium levels shot up he needed to go to hospital immediately. He improved during the day so came home. When we went to bed Les started shaking and shivering and said he was freezing, but when I covered him up, he was red hot. I called for an ambulance and they said he was verging on sepsis.
For God’s sake, had we not gone through enough?
He was taken to hospital and once that was all sorted, I needed to take him home as he was so depressed there and wanted to die at home. People say I’m a strong woman and I think I am, and I just dealt with everything. When he needed the hospital I took him, when he needed an X-ray, I took him and sat with him. But it was only now that I cried out for help. I’d been picking Les up off the floor and thought “I can’t do this anymore, I’m going to hurt myself and then I’ll be no good to anybody.”
So we got everything organised, we got carers in four times a day, a hospital bed with an all-singing, all-dancing air flow mattress and pads because Les was now doubly incontinent and had blood in his urine.
He was getting weaker and weaker and having trouble swallowing his tablets, so I would crush them and put them into yoghurt. He’d been on paracetamol for the pain, but in the last week of his life Oramorph seemed to help.
The night before Les died was also the night before my birthday. He asked if I’d got myself a card from him, I said I would do and left him watching telly with a drink. I said: “See you in the morning”.
The following morning I could see he was asleep, so I ran some errands and came back. He was still asleep, so I did some washing, but he was still asleep, so I made him a brew and was talking to him. Then I realised he’d gone. I think he’d just had enough. He looked so peaceful – all his wrinkles and lines had gone and he had sort of filled out a little bit. He looked like he’d gone to sleep and forgotten to wake up.
I knew it was coming but it still comes as a shock. It was on my birthday too, so I’ll have words when I see him again.
When I went to get the death certificate the registrar asked if I’d been with Les when he died and I said sadly not. She said: “Not many people are, they make that decision”. I don’t blame him, this was a man who used to climb mountains, but he was in pain.
Les had organised his own funeral, he knew what he wanted – he had a cardboard coffin and chose happy songs. It went really well. We celebrated his life – he’d had a good one.
It’s still very raw and I’ve got all these damn forms to fill in, it’s horrible, but I’ve got to put my big girl pants on and just get on with it. My brother’s been really good and will sort out Les’ man cave for me – I couldn’t do that. My friends are organising swimming and walking for me and they’re getting me out. I have dogs too, so have to take them out. I’m also planning a road trip around the country.
Why isn’t there more liver cancer research? Why isn’t there more medication?
I will sort myself out – I just have to take one day at a time.
People talk about breast cancer, they shout about it, and it’s no longer embarrassing to talk about bowel cancer, but no one talks about liver cancer and I don’t know why. It’s a big killer, but no one knows anything about it. Why isn’t there more liver cancer research? Why isn’t there more medication?
That’s why I contacted the British Liver Trust. I thought someone out there must be doing something and thank God you are. I’d never heard of you before – but when I looked at your policies, procedures and what you’re trying to do, I thought that’s the way forward.
If I can campaign for liver cancer I will do it, if I can write to my MP I will do it. We have to raise awareness.
