Still Alive
Don't forget to smile and be grateful
In 2022, when I found out my cancer had spread, the prognosis wasn’t great. My options were chemo or death. But the reality was that the chemo probably wasn’t going to work that well on my low grade cancer. Often a low grade in cancer is considered a good thing, as it means the cancer is spreading slowly. Unfortunately, low grade also means that chemo isn’t as effective. Chemo is designed to kill fast growing cells, because that is what cancer is. Chemo also kills healthy cells growing at a normal rate, but slower than the faster growing cells it is targeting. At least, that is my non-expert explanation. I liken the grading to zombie types - I had the classic 'Night of the Living Dead’ 1968 original slow moving zombie cancer. It meant that the full implications of my GP misdiagnosing me for years took a while to hit. Even after my surgery in 2018, there was hope we had caught it in time. And even misplaced hope is a good thing, it bought me a few relatively stress free years (the pandemic sucked for most of us) before the shit hit the fan.
Death prep, Steph style
2022 was the year I had to sign a form stating that I understood that the chemo they were giving me was palliative (this was a situation the word oxymoron was made for). It was the year I had to prepare myself for the ultimate worse case scenario. The oncologist was hoping to “buy me a few good years” (their definition of good and mine, may differ), and that was their best case scenario. So…. I wrote a will, I put together a funeral/wake play list (it is epic, you will want to score an invite when I finally shuffle off this mortal coil), I decided who would care for my cats and I gave a bunch of stuff away to charity. Hell, I’d be living in a fully minimalist zen space by now if the chemo side-effects hadn’t taken the wind out of my de-cluttering sails. Which is probably a good thing, since I thrive in clutter. Particularly book clutter.
The elephant in the room
I am writing this in 2026, shouldn’t I be dead already? Yes, but I was lucky to have an oncologist who really fought for me. I was young, an anomaly for endometrial cancer (although how many anomalies do there have to be, before we accept that cancer is increasingly impacting younger people), so she pitched a surgery for me. One surgeon said no, as there weren’t enough precedents. But another surgeon said yes, he’d cut me open. It was a very exciting and optimistic development, I can not lie. I’d already had a hysterectomy in 2018, what more was there left in there? Actually, a fair bit. My remaining reproductive organs were removed, along with other stuff. I like to say I was gutted like a fish, but that makes some people wince. Still, I have an epic scar and I can’t spell or pronounce the actual name of what they did (although it was an amalgam of stuff, so even the long named surgery doesn’t cover it all). So now I get to be the precedent. No pressure, but I owe it to those who come after me to live as long as I can.
The surgeons were positively euphoric after the surgery (ironically the head honcho surgeon who signed off on the procedure had Covid so couldn’t perform it himself, but his team were epic). I think they may have been disappointed by my muted reaction to their enthusiasm, but I was away with the fentanyl fairies. Plus, it turns out, being in hospital makes me cranky. After 6 days I negotiated an early release, on the condition that I had a blood transfusion (their condition not mine). This was during the heatwave of July 2022, so my mum thought I was crazy to want to leave the air conditioned hospital, but I was delirious with the need to sleep. And sleep I did. In fact, that first night out of hospital, almost four years ago now, is the last time I got a full night’s sleep. It was a beautiful thing. I remember it fondly. My cat Louis wedged himself across my legs, so I couldn’t leave him again. There was no risk of that, I was totally out for the count.
So, what now?
In a couple of weeks I get to see my oncologist and find out if my cancer has come back. I am hoping that it remains undetectable, but these check-ups are always a source of anxiety for me. I become a bit of a scanxiety hypochondriac. Every twinge a warning to prepare myself for bad news. And I have a lot of twinges. Among other symptoms that you really don’t want to know about 🚽
I am someone living with cancer as a chronic illness. There are thousands of us out there, not cured, not dead, but something in between. As cancer treatments become more effective, this number is growing. And the medical system is not designed for us. Charities are forced to pick up some of that slack, but the local charity that helped me manage my pain closed down due to lack of funds.
Pain is a part of my everyday life. So is fatigue. Some days I am full of beans, others I struggle to shower. Some days I walk like nothing hurts, others I have to use a crutch. I am luckier than many people living with chronic pain and fatigue. I have incurable cancer. That gives me a high level of sickness gravitas. How messed up is that? Yet you know instinctively that it is true. There are people out there who are chronically ill, desperately hoping for a diagnosis that might result in medical professionals taking their struggles seriously. Others have been given diagnoses that are stigmatized or under researched - Chronic Fatigue Syndrome I’m looking at you. I’m really hoping that the flurry of research into Long COVID finally provides the solutions needed to help those with CFS.
But even with my cancer card, I don’t get much in the way of medical support now that I am living in the in-between. Which can make me feel like I’m failing. I’ve been in remission for over 3.5 years, shouldn’t I be better by now? The medical system is behaving like I should be. And I get a lot of sympathy from oncologists who agree that there should be more support out there, but they’re not the ones who can provide it.
The reality is that the health system (in the UK) is designed to help patients in crisis, to try and stop us dying. It is not designed to help us live well. Maybe if it wasn’t so underfunded, there would be room for more holistic support. But we have to work with the reality we are given. In my case, pain, fatigue and indefatigable hope.
This sounds like a nightmare not a quixotic dream
I have come to terms with the fact that my life is the nightmare scenario, the cautionary tale, the “there but for the grace of god go I” situation. I can’t work full time, and when I do work, it needs to be remote first, which limits my options. I get exhausted if I do too much physical activity, but my pain levels rise if I don’t do enough physical activity. I walk a daily tightrope. My boundaries have boundaries. I’m still working this all out as I go along.
A Life Quixotic isn’t about living an easy life. It is about the contentment and happiness that can be built in defiance of challenging times. It is creating new things out of the rubble of who we thought we were going to be. It is about sharing stories in the hope that they help others who are struggling, and mistakenly think they are alone. It is an anti-social-media social space, where life isn’t sugar-coated to the point of toothache.
My favourite Winnie the Pooh character as a child was Eeyore (still is). I was first diagnosed with depression at 15. I am now 51 with wiped out savings, creeping debts and a wonky body. If I can find contentment in the rubble of a life I worked so hard to build, anyone can. That is the point. It isn’t about finding the positive in every situation. Some situations are just plain awful. It is about accepting when a situation is shit, and choosing not to let it break you. My weapon of choice is dark humour, but we all have different coping mechanisms.
So, am I grateful to still be alive? Yes, most of the time. But that gratitude doesn’t translate into constantly feeling the need to pretend that everything is fabulous just because the alternative was death. I’ll smile when I bloody well feel like it, and I’ll cry when I need to.
Gratitude is not the only emotion available
This is for all the cancer inbetweeners and chronic illness sufferers who are expected to be grateful - embrace gratitude when you have something to be grateful for (and there is usually something, if you look hard enough). Gratitude feels good, and you deserve to feel good. But you are also allowed to feel the full range of emotions, just like everyone else. If you are muzzled by a need to constantly perform gratitude for simply existing, you are being denied an essential outlet for your negative emotions, which means they get buried and fester. It is the emotional equivalent of holding in your farts. Just because the alternative was death, doesn’t mean you can’t complain about the small things that are making your life awkward now.
You are allowed to complain, but (and this is true for everyone) you should treat complaining like junk food and avoid overindulging. It is satisfying in the short term, but unhealthy if you consume too much of it. On the flip side, when you are on a restrictive diet that denies you junk food, it only makes you crave it more. Balance is key.
I created A Life Quixotic because I am trying to build a contented life. But you don’t achieved contentment by ignoring the hard stuff or sucking up all the petty stuff. I’ll be open. I’ll share the challenges. I’ll also share how I got through them. Because so far, somehow, I always have.
Quixotic Homework
I like to leave my readers with something practical they can do to lift their spirits. This small piece of optional gratitude based homework comes from the “Science of Well Being” course from Yale University - run by the brilliant Dr Laurie Santos (or at least I think it does, I did the course years ago and I struggle with chemo/meno brain memory issues). You can do the whole course for free online. I highly recommend it. In fact, this may be a sign for me to redo it myself.
The task
Think of someone who helped you in some way. It could be a big thing, or lots of small things, but someone you are genuinely grateful for. Someone who had a positive impact on your life. Write them a letter explaining what they mean to you. Send it. Ideally the old fashioned way (who doesn’t like getting something through the post that isn’t a bill?), but if you don’t have a real world address for them, an email or even a DM is fine. I promise, the simple act of telling someone why you are grateful for them will give you a morale boost.
Your reading to the end gift
Since Louis got a mention in this article, it would be rude not to include a photo of the glorious ginger. This was taken in 2022, when he’d regularly lie on the floor next to my sofa, keeping an eye on me, as I recovered from chemo.
All of my content is free until it is archived, as I want to make my content accessible to anyone who needs it. I’ve set up the paid subscriber option, as there are people who want to support me (mainly friends and family) but they know that I struggle to accept their financial help. This way I can persuade myself I’ve earned it. Should my paid subscribers expand beyond this niche group, I will explore additional benefits I can offer those who pay to support A Life Quixotic. They will, of course, have input into what shape that might take.
You write so brilliantly and beautifully Steph.
Another brilliant edition - thank you so much for making this!