A tunnel and a lit match.
It's been a while since I announced, in perhaps a rather dramatic and arm-waving manner, that I had been diagnosed with terminal cancer. I was then inundated by lovely messages. (If you fancy getting washed warm by that wave of loveliness, then check the tweets I 'liked' on Twitter). Many people have also helpfully hopped on to the running boards of my faltering Facebook jalopy. But how am I doing? I have often felt the need to update you on that front because lots of you ask me.
However, for a long time, I didn't really have too much to tell. I was mainly just getting used to people smiling at me with their heads slightly tilted to one side - the accepted international shorthand for 'sympathy'.
I am still working - and still doing normal things - and embarking on new chemotherapy. In fact, I am writing this from my chemotherapy bed. I'm currently plugged in for six hours of liquid poison.
You know what? I'll tell you about my chemotherapy - that's what I'll do. Other people may be on the same treatment. Some may be about to be. Perhaps I can tell them and you about how my treatment happens.
(Also, don't forget, this saves me from telling all my family and friends the news over and over again - I can just do it here, once and point them to the link.) Spoiler alert - if you haven't got the time, energy or inclination to read about all that you can scroll to the bottom to find out the answer to the question "How are you, Simon?"
My oncologist - an amiable cove who likes to wear a bow tie - told me: "My job is to keep you as healthy as I can, for as long as I can." While admitting he could not "make the cancer go away"- he seems reasonably confident he can keep me toddling along for a while yet.
He told me of a patient who was in similar condition to me. "That guy comes in for chemo once a month and he's been doing it for three years now. He's not getting any better, of course, but he's not getting any worse."
I'll have some of that, I thought. Something to aim for, if nothing else. Bearing in mind, I had been told that I had anything from six months to two years left.
So, I go in to the hospital every other Monday. Where I am right now. I sit on a bed and they plug me in to the matrix. You may have seen saw my 'portacath' - it's a brilliant, one-stop shop where they can take blood, give blood, insert chemo, even contrast dye for CT scans. All without the pesky "sharp scratch" phrase the nurse says when taking blood with a needle out of a vein in your arm.
Seriously, everyone should have one. It makes everything so much easier. In fact everyone probably will in the future. We could put food into it. And booze. And vitamins. And software updates. And cheese. Or whatever passes for cheese in the future. Anyway. On that Monday, they don't just pump in chemo. Things have moved a long way forward since the days when - as my doctor said - "we just chucked the poison in you and let you feel ill for days." They now pour in anti-sickness drugs, anti-histamine, loads of stuff to stop you feeling lousy.
Then the strong stuff. The first of the big drugs. The cetuximab. You can click on the link if you want but it's not strictly chemotherapy. It's a 'monoclonal antibody' - a biological drug as opposed to a poison. In terms I can understand, it attaches itself to the cancer cells and turns off the 'signalling bit' - the bit that says to other cancer cells "Hey, let's divide and grow bigger and bigger inside this warm body and then finally make this man's family sad for a really long time."
Then I have irinotecan. This one's also pretty clever. It stops the cancer cells from getting the food they need to divide and grow, That confuses the cancer cells so much that the DNA of the cell gets all tangled and stupid, so it CAN'T divide.
Yes, I just called a cancer cell's DNA stupid. Let nobody tell you I'm not "fighting back" or "battling bravely". I'm practically Spartacus, here. Then the last bit. The nurses attach a cocktail of chemotherapy to me and send me on my way. I wear it around the house and office for two days.
The cocktail is called FOLFIRI. It attacks the cancer cells. Blasts them. And blasts lots of me, too. It remains plugged into my chest for 48 hours. It comes in a little thing called a “Baxter bottle” and the nurses gave me a wee sleeve for it, which attached to - yes, the horror - a bum bag belt. A bum bag. *Oscar Wilde voice* "A bum bag?"
I didn't fancy walking around looking like an American tourist: "Excuse me sir, is this the way to Lie-Cester Square toob station?" so I ditched the bumbag and put the bottle in the hood of my hoodie.
It's perfect, it's discreet and it makes me feel like a benign robot who is being refuelled with special, futuristic oil. I may even bring out a range of natty "cancer hoodies" and go on Dragon's Den. I just need a catchphrase.
(I usually hide it deep in the hood. I made it more visible so you could see it) Two days later, the bottle comes off and I wait for the "tunnel". The chemo tunnel, as I have christened it. Usually, by the Friday, I start to feel really tired. By Saturday, I'm fully exhausted and stay in bed all day. I'm like a mobile phone with 1% battery. I can wake up, tell the time, and then go back to sleep. Nothing else. Same for Sunday, too. By Monday. I'm usually starting to feel better. And I go back to work.
That's kind of it. The worst of the side-effects. Really. Not so much of a crusading hero now, am I? Sure, there's also this rash that covers all of my upper body. (It looks like this) Sure, trips to the toilet don't make me walk out afterwards with the usual spring-heeled joy. Sure, there is some pain - mainly a low abdominal throb - but so many people have worse.
It would be annoying though, wouldn't it, if I did all that and it made no difference to my chances? If it didn't at least slow down the growth of the tumours? All the pain and no gain? I was sometimes worried that would be the case. Well, that's why I'm writing this today. I have had news. Cautiously positive news. I had a CT scan last week and the results came back today. They compared it to a scan that they took in November 2016. The one that brought the really bad news.
I was nervous, about the results, of course. I had mapped out the possible/feasible outcomes in my head before coming to hospital today. In my opinion, from best to worst, they were:
Tumours are shrinking.
Tumours have stopped growing.
Inconclusive scan.
Tumours are still growing, but slower than expected.
Chemo is not working. Cancer is growing and unaffected and perhaps in new places.
Today, the oncologist told me "it's a good scan". He said many of the tumours* inside me have shrunk a bit. Some of them by a lot. Yes. Good. (*I originally wrote 'my tumours' but fuck that, they're not mine).
So - I got pretty much the “best” news I could feasibly hope for, within the parameters of my situation. I’ll take it. I’ll take it cautiously, but positively.
It is a lit match in the chemo tunnel. Not showing a way out, but showing a way.
We will carry on with this chemo for at least another cycle. A surgeon will look into whether they can cut out some of the tumours (again, to extend life). I may have a break from chemo, or I may go on to a more relaxed regime. We don't know yet. So, there you have it. Cancer is still going to kill me. But not today.
And probably not tomorrow, either. For those who scrolled to the end, here's the question and its answer. Question: How are you Simon?
Answer: "I'm okay. Chemotherapy can be tiring and painful but it has reduced the tumours rather nicely after the first four cycles. While the cancer will never go away, this is a good sign for extending my life for a bit longer. Thank you very much for asking. Your hair looks nice."
