Phil was diagnosed with cholangiocarcinoma, a rare form of liver cancer, in 2020. In this moving and inspiring piece for Real Voices, he explains his journey from diagnosis to becoming the first patient in Britain to receive the drug Pemigatinib, and the importance of positivity.
One night early in 2020, I was getting into bed and suddenly felt horrific pain right in the middle of my back. It was so painful that it took my breath away, and I couldn’t talk. I had a quadruple heart bypass a few decades ago, so my partner Jannette thought I was having a heart attack. I asked her what colour I was, and she replied that I was pink. I knew that if it was a heart attack I would turn grey. I decided not to call an ambulance and after a minute the pain suddenly disappeared. I went to the doctor, and at first she decided to take my bloods. When they came back normal, she decided to send me for an ultrasound. To cut a long story short, that led to a diagnosis of liver cancer, a rare form called Cholangiocarcinoma.
I went to see the surgeons, to see if they could resection my liver as this cancer exists in the bile ducts. They put me through some tests, to see if I was eligible for the resectioning surgery. Looking at my results, they apologised and told me they didn’t think I would make it. I asked for a second opinion, so they sent me to a professor at Queen Elizabeth Hospital Birmingham. He ran a few tests, and confirmed to me that the resectioning surgery wasn’t the way forward, as due to my heart bypass I probably wouldn’t survive the surgery. It was obviously disappointing, but I said to him “Well I’m no worse off than when I walked in here am I?”. His reply rings in my ears to this day. He said “Keep that in your mind, because the mind rules the whole body. I’ve seen a lot of patients just wither up in a corner, but you’ve got the right attitude.” Ever since that day, I’ve always kept a positive attitude.
Eligible for a clinical trial
Seeing as they couldn’t operate, we decided to go down the route of chemotherapy. I spoke to Dr Martin Scott-Brown (who is absolutely tremendous) who suggested that there might be a trial he could get me on. He originally gave me a 5% chance of being eligible for the trial. Dr Martin explained that cholangiocarcinoma has two strains, and the new drug only had a chance of working on one of them. He sent me for six biopsies, which was pretty rough on me. At this point I asked if any of his 20 patients had successfully qualified for the trial, and he said none had. The results came back, and unbelievably I had the right strain for the trial. I felt like I’d won the pools, Jannette and I were jumping up and down when we heard.
The drug is called Pemigatinib, and I take one tablet a day. It’s on a three-week cycle, so I have three weeks of taking it, and then get a week off and a scan, after which I start the three weeks again. The cancer in my liver was 15.5cm when we started, and the first two scans showed that it had shrunk by a whopping 6-7cm. It didn’t move for a while, and then nine months ago the scan showed it had shrunk another 2cm. Currently, it is not moving. The theory is that if it doesn’t grow or move by 20% of its mass, I can stay on this tablet for the rest of my life. I’ve just had my two year anniversary of being on this drug. They can’t believe it over at the Liver Trust. Becky, one of the nurses, said she never in a million years thought that this drug would have this much of an effect. To this day, I still don’t feel ill.
Support from The British Liver Trust
I’ve received a lot of support from the British Liver Trust since my diagnosis. I’ll never forget the day I was told I had cancer. They told me over the phone, and it was like a steam train hitting me in the chest. I found the Trust on the internet, and rang them straight away. I spoke to Kirsty, one of the liver nurses. I’ve been talking to her ever since, and to many of the nurses there. They help me tremendously. I did a Zoom for them recently, with 70 oncologists, all asking me questions. I don’t think half of them had even heard of cholangiocarcinoma. I was the first person in the United Kingdom to try this drug. Dr Martin is the first oncologist in the country to get a patient on this drug. It has now been rolled out across the NHS, which makes me very proud.
Advice I would give to others with cholangiocarcinoma
First of all, I would tell anyone with this form of liver cancer to ring me. I made friends with a lady in our ward, who’s name is Carol. I remember seeing her just sitting in the corner on the ward, looking as miserable as anything. I said “What’s the matter with your face?”. She told me she’d been diagnosed with cholangiocarcinoma, and the doctors said she only had a few months to live. I immediately told her to get that out of her head, and I related my story to her. We need to stay positive, for God’s sake. We might have off-days, but you need to watch out for them and pull yourself back from those feelings of hopelessness. Like the doctor said, the mind rules the body. So anybody who gets diagnosed with this disease should come to me, because I probably know more about it than the doctors, as I’ve lived through it.
Secondly, I would tell them to ring the Liver Trust, and take all the support they offer you. Finally, keep that all-important positive attitude. I have meltdowns, don’t get me wrong, but I’m always striving to stay upbeat. Look at me now, I’m almost three years post-diagnosis and people can’t believe I’m still here. It’s not even blind optimism, I’ve worked it out logically. My cancer is currently at 8cm, so it’s shrunk by almost half its original mass. Even if it starts growing again, it’ll only grow by a couple of millimetres a month. It will be a long time before it gets back to its original size, and I wasn’t even ill when it was at 15cm. I book holidays, and I got married to Jannette, and we both agreed we’d live for today, every day. I wouldn’t be here without her. She is my rock. We’ve been through a lot together. We lost her son to a brain tumour at 28, then my daughter committed suicide at age 34. Our daughter was diagnosed with MS two years ago, and now I have cancer. I don’t know how Jannette does it, but she’s absolutely amazing.
The way forward
I’m not interested in conversations about my life expectancy. Dr Martin warns me that my cancer will start growing again, and I tell him I’m not having it. They told me originally that it would never shrink, and it did. I am the first patient with this type of cancer to be put on Pemigatenib, so who’s to say what will happen? I can be quite cheeky with Martin, but we’re great friends. He’s got his hands full with Carol and me on the ward, I can tell you.
People are confused as to why I’m so cheerful all the time. If I was miserable, I’d still have the same disease, so why not be happy?
If you or someone you know has been diagnosed with liver cancer, please contact the British Liver Trust.