I seemed to be getting a lot of bugs, a couple of years ago. Then last year, 2016, I went into a serious fever in January which, by April, was speculatively suggested might be a cross-species disease like brucellosis. I keep a small flock of sheep as a hobby. Blood tests showed unusual scores for things related to the liver, but these were ignored and I was given antibiotics, even though I actually tested negative for brucellosis. The fevers reduced but I wasn’t very well, needing to sleep every afternoon.
In maybe August, the fevers started again and got worse as the months went on. By November I was also getting upper-right abdominal pain. In December, I had a sudden sweating fit in a doctor’s office and he (finally) referred me to hospital, worried that I might have pancreatitis. I was put in the care of the infectious diseases department and had lots of blood tests. Liver results looked poor still, as they had a few weeks before, but I was also tested for Tuberculosis and Coxiella. As a precaution I was given a CT scan on the 23rd December, and it showed a tumour on my liver. I was told that day and passed to the liver people.
After an MRI scan, I was told, on January 5th, that the tumour was large, 11cm across, and had entered the portal vein. By the 19th January I had an inoperable tumour that had spread into the main branch of the portal vein.
So, that escalated quickly. We’re in clinical trials and putting your affairs in order territory here.
All being well, I’ll write something about what I’ve learned about the therapeutic options available for people at the ‘slightly burned toast’ end of the spectrum with liver cancer. This is about something else, which I hope might be useful to people who have it and get steered here by Google.
When I thought I had an infectious disease, I thought there probably wasn’t anything much I could do about the high temperatures and malaise. It needed to be diagnosed and to have a specific fix. But now I know it’s all caused by an unhappy liver. That changes everything.
If I can make my liver unhappy – which I can, by drinking a bottle of brandy, say – then I can make it, if not happy, happier. I can learn to manage it. As soon as I had the diagnosis, on December 23rd, I started to wonder what would help. That change of attitude was a transformation.
And attitude matters a lot. Get ready to fight everyone and everything that stands between you and what you need. I don’t mind dying. I wasn’t planning to do it right now, but it isn’t scary. What is revolting, though is the idea of passively accepting it. Just as important, motivation gets you out of the chair. You’re not dead yet.
The following are the ways I’ve eliminated fever to a very rare thing, night sweats to one or two days a week (both from every day), malaise completely except that caused by very high temperature (by ‘malaise’ I mean feeling vaguely shit, unable to focus etc. I’d though it was inevitable, but it isn’t).
But let me preface this with the strong suggestion that you take careful notice of what works for you, vary things and see how you feel, and get it right for you. This has worked for me.
1. Don’t drink. Don’t even eat chocolate liqueurs. Nothing booze-like, at all, ever. That’s just a must. If you can’t manage that, piss off. There’s no point reading any more of this, you’re fast-tracking yourself.
That was easy for me. For reasons that might be the cause of the cancer (there’s also a possible genetic contributor in me in something called haemochromatosis), I’d quit boozing with any regularity four years before, and just drank a couple of days a week, normally. Stopping completely was easy. I know it isn’t usually, but you must.
2. Don’t smoke. Really. This isn’t lung cancer, but you will, hopefully, be putting yourself through a mangle to do the best you can to get better against all the odds, and you need to be as fit as possible for it.
3. Drink water. Lots of water. No, that’s not lots of water, I mean lots. I will go through two pints overnight and probably ten during the day. I started with mineral water, but tap water is actually much nicer. This is the biggest factor in stopping fevers.
4. Eat very regularly even if you have no appetite. Eat as soon as you get up. Don’t leave as long as four hours before eating again. I’ve learned that the sick feeling I had much of the time wasn’t the illness per se, it was not eating properly. It can take as little as a mouthful of something to feel better. And eat even if you have no appetite. Forcing yourself to complete a small plate of food doesn’t deserve a medal. You should take it for granted you’ll make yourself do that sort of thing. Find out how regularly you need to eat. When I started this, around the beginning of January, I had to eat every two hours. Now, it’s more like three, maybe more sometimes, and I have regained appetite some of the time, which is a real pleasure.
5. Eat the right stuff. Nothing sweet, ever. I really fancied porridge first thing every day, but put a half-tablespoon of honey on it and it made me ill. I blamed the porridge and changed to eggs. It was the honey. No cake, no soft drinks, no chocolate, no sugar in anything, not even too much fruit or fruit juice. One row of a non-sweet dark chocolate bar can give me an hour of malaise and elevated heart rate. Don’t do it. You can feel healthy if you don’t.
Protein, protein, protein. Meat, eggs, spinach. I have also had a craving for cheesy mash potato. Kate, my long-suffering wife, has to put up with a new dietary faddishness that’s like a woman in pregnancy. I struggle to eat vegetables, so that’s what I do and I eat them. But my body wants the protein. Lots of eggs. As much steak as you can afford.
6. Sleep in the right position. This is my newest discovery, just a few days ago, and both the most obvious and the most surprising because I haven’t seen it mentioned in these sorts of lists. Lying on your back puts no pressure at all on the organs in the abdominal cavity. They’re happy offal. Lying on your right side does not put pressure on your liver. Lying on your left side does put pressure on your liver. Lying on your front crushes all the organs together with your weight on top of them.
Naturally, my preferred sleeping positions had been on my front, or on my left side.
I had been taking painkiller, increasingly, (just over the counter ones) both to get to sleep because it hurt when I was lying down, and then to get through the day afterwards. So I stopped taking them, so I could feel properly what was hurting and where, and started lying on my back. I get backache after a while, sleeping on my back, but I had read that putting a pillow under the knees prevents or reduces that. Fat chance, I thought, but I gave it a go. It works.
After a couple of days of ‘interesting’ pain as things got used to being treated differently, I don’t need to take painkiller at all, day or night.
7. Take as few painkiller as possible. You’re going to need them, so lay off unless you have to. They work much better if you use them as sparing as possible.
8. Exercise. This makes a huge difference too. Walking is about all you’ll manage, probably, and you’ll have to set a target where it’s right for you to start. At the end of December, for me, this wasn’t much more than 200 metres or so. But I pushed it. It’s proper exercise and proper training if you’re pushing your ability and stretching your limit, so be an athlete. The best day since, after regaining weight and muscle tone after over a year of what seemed uncorrectable weight loss, I did over 2 km in all, over two walks. I can’t do that every day, and after an initial period of pushing hard I’m now giving myself a more gentle consolidation period, partly because I’m off painkillers and trying to fix other issues.
9. Rest regularly. Are you having a good day? Been really feeling it for two or three hours? Great. Have a sleep. You’re ill, and you’ll set yourself back a day or three of you overdo it.
10. Accept it. There isn’t a miracle cure. Squirting coffee up your bottom isn’t going to help. You can attack this, but you need to do using proper conventional medicine, and cancer therapies are moving forward so rapidly that this sort of advice, I hope, will be almost irrelevant in twenty years’ time. Accept it doesn’t mean ‘give up and die’. It means, accept that you have a very serious illness and a poor chance of living very long. Don’t fight that fact, it’s pointless and self-defeating. Fight the disease instead.
In about a week, I’ll post a summary of how I see my treatment possibilities, and how I’m taking control of my own fate to the greatest degree possible. In the meantime, I hope this might be helpful to some people.