Yesterday I found out I will die soon.
A half hour video call with my oncologist in Southampton concluded I have a life expectancy of six to twelve months as my cancer is terminal.
The nasties growing between my heart and lung that three months of “salvage chemotherapy” had shrunk earlier this year have come back to life, but there are now more, and the expectation is they will continue to do their thing, possibly making their way to my liver, my brain and elsewhere in my body. They’re inoperable. There isn’t a treatment left to get rid of them.
I’m apparently unusual (I knew that!), with my oncologist seeing only one such case of this rare cancer each year.
There is a chemotherapy treatment that has the potential to add a few extra weeks, maybe months, to my life, but the trade off is the loss of quality of life due to the side effects of that chemo. Right now, I’m yet to decide whether to go for it or not.
Hearing you’re going to die is odd.
I’ve had friends and acquaintances receive that news and I thought I could empathise with their devastating news. I now know I couldn’t.
It’s a strange, other worldly experience, to think there may only be one more birthday, one more Christmas, one more wedding anniversary.
It immediately washed over me like the most overwhelming sea of guilt to think that my husband is likely going to be alone at home without me. Our holidays. Our watching telly on the sofa. Our weekend breakfasts down the west coast. I won’t be there to laugh or nag or snuggle up in his lap.
It just feels totally unfair. For him. For me. And I know that makes me sound selfish. I don’t mean it like that.
Having to ring your dad to tell him you’re going to die is horrible. Then your brother. Then a friend. Then another friend. Then your boss. Each call is utterly exhausting.
The weirdest bit is that, deep down, I’ve sensed I am dying for around three months now. I just kept hoping I’d be wrong.
The doctors didn’t know as I only had the scan and other tests last week, but I knew I was dying. I just didn’t have the words to describe it and I was determined to keep my best game face on as each day had become ever so slightly more difficult than the previous day.
It’s tiny stuff. I’m just a shade slower. I’m just a shade tireder. My skin is just a shade drier. My pain is just a shade sorer. And on it goes. Incremental, but over time it adds up. I don’t feel good.
But I smile my smile. I do my work thing. And when wonderfully kind people say nice things, especially “you look so well”, I cry a little inside, and outwardly I smile, thank them, and say “I’m plodding on”. It’s my way of trying not to lie to them while not burdening them with my woes.
Right now I finally feel able to let that mask slip. Again it feels selfish. But I think that’s okay.
Do I transfer my savings to my husband’s bank account? What happens to those flight loyalty points I’ve got? Do I need to ring the tax office and let them know I’m dying?
They’re the daft, wide-ranging and random questions that pop into your mind at odd times of night.
It’s currently 2.40am. I’m absolutely wide awake. I can’t sleep. My mind is racing.
Should I plan my funeral now? Do I want to be buried or cremated? What will dying feel like? How can I not exist any more?
I told you the questions were random!
I’ve Googled “what happens when you’re told you’re dying of cancer” and I now know the results are rubbish. Not rubbish in the sense that the situation is rubbish, but rubbish in the sense that all the results are inane. Apparently I’ll be upset.
No shit, Sherlock!
I may get angry. Yup.
I may find it helpful to cry with my partner. Oh we’re doing that alright!
Weirdly one of my very first thoughts after being told I’ll likely be dead in a year is that I need to write a book for other people to read as soon as they get similar news to tell them what happens. Then it occurred to me, the last thing you want to do when you’re told it’ll soon be game over is read a how-to guide. So I’ve parked that one.
The other oddity is how the normal bits of life just continue to happen.
Within two hours of being told the news, my husband and I were chatting about what we were going to cook for dinner. We both smiled when we remembered it was Only Connect night on TV. We treated ourselves to a bowl of ice cream while we curled up and watched the quiz.
It was like nothing had happened.
Yet he’d had the awful job of phoning his parents and brother to tell them the news. He’d rung his boss to let them in on what was going on. He shouldn’t have to do that. We’re both relatively young.
We should be thinking about holidays and home improvements and all the things we want to do in life, together.
Now my heart breaks at the prospect of the person I love more than any other in this world being cut adrift. It’s not fair on him. I feel like the worst husband ever, even though I know that’s just self-serving self-pitying silly talk.
We lost our holiday at the start of this year to my chemo. We rebooked it at the end of my chemo and lost it to the pandemic. We then rebooked it for this week, and the pandemic has put pay to our trip away yet again. Damn you, Covid!
It sounds so daft, but I just want us both to be on the cruise ship we love, sailing from place to place, sitting in our cabin, on our balcony, or in a cosy corner of the ship just letting the world go by while we read a book. I want us to go to the daily quiz, the nightly show, and to disembark in different places each day.
I hope, if this world reopens in time, we get our chance to do that. It’s our happy place.
We all deserve happy.
Anyhow, I’m rambling, and for that I apologise.
Letting these words spill from my fingertips to my computer screen is helpful. It’s also, currently, giving me reason to use the ‘dying’ word. I’ve never been a fan of abstract euphemisms like “passed on” or “gone to a better place” as it’s always been my feeling that it’s delaying the inevitable reality check that somebody is dead.
And now it’s me.
They say six to twelve months.
It could be more. It could be less.
I promised the oncologist I wouldn’t be alive to complain if he got it wrong. That was my attempt at humour, but I do have a point!
Right now I am broken. But, with the love of my friends, my family, and most of all my husband, I’ll get it together with a view to living my best life.
I’m not dying. I’m living. It’s just that I’ve got less of it to do so it’s my obligation to make it matter more.
Thank you for reading this. Thank you for caring. x
(This blog was written in the early hours of 3 November 2020, but posted later to give us chance to speak directly to our nearest and dearest first. I am 100% certain that I will have forgotten to speak directly to at least one person I had intended to who, instead, has just read this. For that, I apologise).