My wife and I used to have BUPA health checks every year and after the one in October 2020 I was told there were some funny readings on mine. Initially they discovered hepatitis C and wanted to do more tests. Then cirrhosis of the liver was discovered, caused by the hepatitis, then cancer tumours, I believe they’re called multi nodal. This ruled me out for surgery or a transplant because there are too many nodules and they’re too widespread.
I travelled quite a bit in my late teens and early twenties and probably picked the hepatitis C that way. I was also a drug user, I don’t think it came from there, but maybe it did. The specialist said that most likely I had been lugging the infection around for ages before it finally took hold and decided to rear up. I was treated for the hepatitis C with a course of pills for two to three weeks and that’s under control, I’m just left with the liver cancer now.
Saying the diagnosis was a shock is an understatement – I was going along sweetly enjoying life – I’d survived Covid and all the rest of it then this came out of the blue. The specialist said I could have carried on for another four or five years with no problem at all but then would have dropped down dead, so I was quite fortunate it was caught when it was.
I was given this news in a particularly dingy room in a particularly unpleasant hospital and no one prepares you for it. You’re told: “You’ve got cancer. Here’s a few phone numbers, off you go, we’ll be in touch.” I thought “Cheers, thanks a lot”. I came out, phoned my wife and she promptly burst into tears. I remember walking back from the hospital and thinking: “Oh, shit, this is a bit of a bummer.”
I howled at the moon a bit at first and thought “Why me?” but then thought “Pull yourself together for Christ’s sake” and decided how I would think about it and deal with it. Worrying wouldn’t do me any good, so I bundled up all the negative thoughts and went for a lot of long walks. I’ve talked about it quite a lot with my wife, but didn’t want to burden her too much.
Over the next few weeks I had a quite a lot of phone calls from various specialists and they told me not to Google the symptoms because you will come up with some horror stories. If I had any questions I should ask them, but I realised I didn’t need to know a huge amount about what was going on. It’s not going to change my life if I can pronounce every single drug that I take.
I was told they were experimenting with new drugs called Atezolizumab and Bevacizumab and I did I want to sign up for the trial. When I asked what other choices there were I was told none, so I decided to go for it. There was an old treatment that they had been using for liver cancer, but it wasn’t particularly effective.
Atezolizumab and Bevacizumab have worked remarkably well for me, the larger nodules have shrunk and I’ve tolerated the treatment well
The drugs have worked remarkably well for me – the larger nodules have shrunk and I’ve tolerated the treatment well, even though it’s pretty invasive. Every three weeks I have a blood test on a Friday, the consultants tell me the result on the following Monday, I have treatment on a Tuesday, then go home and go for a run, so it’s fairly straightforward. I’ve been remarkably lucky, the only side effect I did have was an increase in the protein in my urine from the Bevacizumab and I haven’t taken that for 12 months now.
My wife and I had been wondering whether we should we retire early or carry on working a bit longer. I asked the specialist for the prognosis and he said: “Five years definitely and ten years unlikely” so I decided to retire and start doing the things that I actually wanted to do.
She has now got to grips with the diagnosis and we talk about the treatment. She likes to be informed – she may not like what she hears but says she needs to know anyway – she can deal with facts but not ambiguity. The kids are in their 30s now, they didn’t deal with the diagnosis very well at first and every time I drop them a note to say: “Can we have a chat?” they always go “Is everything all right?” and I say “Yeah, fine. Don’t worry about it” One son is in Australia, the other is up in the Midlands so we’re not in each other’s pockets and I don’t think they think about it too much now.
I’m 61 and with a bit of luck I’ll hit 70 which is a pretty good number of years for most people. I won’t have the big 80th birthday party that I was half thinking about, but so what? If you have something incurable it comes down to how you want to deal with it. I spent years working in mental health trying to help people deal with things they couldn’t put right, and you can either do that negatively or positively. I want to be happy. If I did have more side-effects to the treatment I’m not sure I would be this buoyant, I’d like to think so but have a sneaking suspicion that it would creep into life more.
Apart from a few family members I’ve kept the diagnosis private and don’t talk about it very much. I don’t want people constantly thinking about that or looking at me with their head slightly to one side and asking: “Oh, how are you?” Some people allow their illness to become them, so Joe Bloggs painter decorator becomes Joe Bloggs cancer sufferer, but I am me who just happens to have something inside of me which is going to kill me. I want people to know me for me, not because of the cancer.
People might say I’m denying its existence, but I’m not. It’s about deciding how I want to lead what time I’ve got left. Ok, it’s not fair, but where is it going to get me if I get myself upset? Absolutely nowhere.
We may have family and friends but we are ultimately on our own. We’re the ones who are going to die, so if you have even a small amount of control that really helps. With my background in mental health I would say therapy is great to get over the shock, but after about six months or so you’ll be going round in circles. Short-term focus therapy can help you see things differently though – some people will go down the healthy route, such as going running, others have gone on longer holidays or brought forward life plans.
Whatever you decide, live your best. If you have things you want to do, don’t hang around, go and do them.