It has been several months since my last confession. This is a long one so you might want to have a wee first.
I left you all hanging with Let’s DO This!!! Or at least, someone wrote that. The person who wrote that was not me, not as I am today. If that daft cow had walked up to me last week, I would have slapped her. She has made the last few weeks very hard for me. Her expectation that I would get through the treatment and want to go out and buy party shoes and celebrate could not be further from what actually happened.
What actually happened, was that I made it to the end of the treatment. That’s it. Nothing more exciting. No need for fireworks or fanfare. It was a huge anti-climax. I couldn’t have cared less. I was DONE with cancer, I felt utterly exhausted. I wanted to sleep for a year. There had been days since the final chemo treatment when I felt too weak to stand up, let alone go shoe-shopping. I often felt too sick to eat (and anyone who knows me knows that never happens.) Days and days when I felt it might have been kinder to just shoot me. All I can say is that I made it to the end, but not necessarily in one piece.
After the first treatment I just felt so ill that I could hardly lift my head off the pillow, I really wasn’t capable of cooking, doing laundry, doing anything. Then the dishwasher broke and the kitchen ceiling began to leak from the bathroom above... I lasted 4 days before I had to admit defeat and ask the girls’ dad to look after them. When I’d finished the first course of chemo tablets, it took me a day or two to feel better. Then I woke up with the shits (a common side effect of the meds) and I don’t want to brag but these shits were relentless and epic, even for me. So much so, I ended up in hospital for 6 days, starved of all but Dioralyte and off my tits on enough drugs to bring a rhino down. To make sure I was well enough for the next treatment, they delayed it by a couple of weeks, which gave me the chance to bounce back- I felt well and almost normal, just with less energy.
Treatment 2 was a week before Christmas, and didn’t seem to knock me out as much as the first one. Given how bad I’d felt, the oncologist decided to slightly reduce the dose of my chemo treatment and tablets. I still felt awful, but it didn’t last as long. I felt fairly well for Christmas, although it was a VERY quiet one for us all; no fuss and no pressure, which actually was just what we all needed, even the kids.
Treatment 3 was a couple of weeks after Christmas, and I felt just dreadful. The tingling in my arm (another common side effect) was still really bad even though they diluted the chemo with something else to lessen the discomfort. It didn’t really work. I kept forgetting how sensitive I was to to cold things and often dropped them from the shock! I had to wear gloves to eat a banana because it was too cold to hold comfortably. And the sickness, oh my god. I slept most of the time, which was good, because it was respite from the nausea.
I felt quite excited to go for my last chemo, knowing it would soon all be over. But when I got home, I felt quite depressed. I still had 2 weeks of the evil chemo tablets to get through. As usual, I had a couple of ok days (they give you Dexamethasone for 2 days after each treatment- think Trump with Covid giving that speech to say how well he felt!) Then once those two days of the good stuff were done, I bombed. That was a tough week. And at the end of it, a CT scan.
The scan was booked at one of the NHS Nightingale hospitals, about 30 minutes drive away. It was a miserable rainy day, but it felt like such a treat to be out for a drive! At the hospital (once I’d found the way in - which was a Krypton Factor type challenge in itself), I found myself -and a couple of times I lost myself- in a weird maze of plastic covered tunnels like that scene in ET. I couldn’t fault the efficiency of the scan appointment, but it did make me cry. It was all so impersonal; come here, go there, do this... not much kind chit-chat and certainly no understanding of what I’d been through, which was really starting to pile up in my psyche. I felt frightened of what the scan might show and I realised that if they found more cancer I wasn’t sure that I would be able to go through all this again. I had no more fight in me, and after the scan I suddenly felt faint and had to go sit down in a sterile, plastic recovery area, where I sobbed like a little girl.
I thought about this cancer journey I’d been on since January 2018, four days after the man I was in love with, my first long-term relationship since separating from my husband in 2015, told me he would rather spend his days off with his other lady friend and just see me, as a friend (WB), at the weekends. That. And then, within days of that stomach-churning wake-up call, I go for a colonoscopy, where they tell me they’re pretty sure I have cancer. This is followed a few days later by MRI and CT scans, and a few days after that, I get my diagnosis of Colon Cancer, from my very gently spoken but worryingly grave consultant. This put me on a three year rollercoaster with deep lows and short-lived highs. The first plunge into despair was not actually the diagnosis but the then devastating emergency ileostomy. Who would ever want me now, with a bag o’shite attached to my tum? I might write about all that separately at some point, because at the time it was a big deal. A massive deal. But I didn’t focus on the cancer at all really, I was more interested in getting it dealt with and living my life. I was accused of being in denial, being an ostrich (you know who you are!) but that was my way of getting through it; I was only 46, and I had so much I wanted to do! This was just an inconvenience, a blip, but it wasn’t going to stop me living my life.
That whole cancer journey was, to begin with, a challenge to ‘get done’; but it began to feel like the Crackerjack cabbage game where kids were given more and more junk to hold.
I can do this, I thought, and didn’t get too down about it. But the more they piled on me, the harder it became to hold it all. Rightly or wrongly, I left a lot of that to my mum. I let her hold in mind the important stuff; my calendar of appointments, driving me to treatments.. the stuff you have to plan for, the problems that might come up. I’ve never been very good at all that and Mum is a organisation ninja. As for me, I got good at compartmentalising my life, breaking it down into chunks that I could see the end of. Chemoradiotherapy for five weeks. Done. Early menopause as a result of the radiotherapy: FFS really??? Ok. Major surgery, Lower Anterior Resection, where the diseased part of my bowel is amputated. Done. Infection at resection site, back in hospital with a tube up my arse collecting gunk in a bag which I have to carry around with me. Really gross and unpleasant, but done. Same again a couple of weeks later. Done.
12 weeks after the surgery I begin a Counselling placement and throw myself into all the coursework I missed while I was on sick leave. I’m volunteering several hours a week and having fortnightly Supervision to discuss my client work, writing assignments when the kids are in bed. My 100 hours of client work is completed by June 2019 and I get all my work handed in, marked and signed off, while continuing to volunteer. I love it. I am where I wanted to be, doing what I wanted to be doing. My first annual CT scan comes back clear and by the end of the Summer I am qualified! When I go into college to collect my certificate in early September, I feel accomplished and happy, so I treat myself to coffee in a quirky cafe where everything is for sale, and for £30 I buy myself a chair I’ve been coveting; it’s handsome and comfy but very tatty, and it’s going to be my ‘Counselling Chair’ one day! Life is GOOD.
Then, in the Autumn, I get the phone call I’ve been waiting for; the hospital call with a date for my stoma reversal surgery. Ella Fartzgerald the stoma is to be joined back up with my now healthy (and slightly shorter) bowel, and put back inside my abdomen. The replumbing is to take place the day before New Year’s Eve. The arsepipe is going to be back in business, and after two years of bum silence I will once again know the joy of a satisfying botty-burp. (It’s true, you really don’t know what you’ve got ‘til it’s gone!) What a perfect beginning to 2020, I thought, I will be back to ‘normal’ again for the new year!
Ahhhh 2020. Oh lol-lolly-lol-LOL.
Turns out ‘normal’ will never happen again: enter Lower Anterior Resection Syndrome. I won’t expand on that in too much detail here, now, because it’s ongoing and embarrassing and frankly it’s life-limiting, demoralising, mortifying and just doesn’t seem to get any easier, although I am learning to manage it which sometimes works but still often ends in disaster. I never thought that I would miss Ella Fartzgerald, but she was a LOT less hassle. When Boris tells us to ‘Stay at home’, I’m feeling quite ‘Ha-welcome to my fucking world’ because I haven’t been able to go anywhere except the toilet for months. Sorry, but when I hear people moan about the Covid19 lockdowns, I sometimes think, well at least now everyone’s miserable and not just me; it’s not like I’m missing anything. (You see, even I can be a selfish bitch sometimes.)
My previous post ‘New Scribblings’ explained that I had just moved house and had my second annual check-up scan, and was ready to start thinking about getting back into my volunteer counselling work again, when I got more bad news, leading to more major surgery and the chemotherapy I have just begun to recover from. So this post has come full circle. Wow, I’ve been through a lot of shit, literally and figuratively.
So when I went to see my oncologist last week, I got the results of my latest CT scan. The week before I had been very frightened of what they might find, and felt very low and tearful. All that time, 3 years, all that stuff that had been piled on me and I had managed not to drop it all, like the Crackerjack cabbage game... and waiting for those scan results I had begun to wobble and lose my grip on it. There was an overwhelming sense of fear, and my inner voice was saying, if you give me ONE more thing to add to this pile I’m going to drop it all, maybe even on purpose. Do NOT, I’m warning you, give me ONE more thing to add to this pile because I will break. I can NOT do this any more.
But the results were good. No evidence of disease. No cancer. What a relief. It’s over, for now at least. I felt relieved and elated for a couple of hours, and then just angry, because now I was supposed to go out and buy those beautiful leopard print, kitten heel shoes! That silly woman who had written about them had set me up, with her woefully inaccurate expectations of what I would feel like by the end of chemotherapy, and I felt really bloody angry about that. The shoe thing was like adding a cabbage to the pile of things I had been expected to deal with. And so I rejected it. I don’t want the damn shoes. I just want to be able to put all this shit down now, and live. And for my life to be about living. I’m not naïve enough to get all ‘happily every after’ about it, but for now, I’ll take it, and I’ll run with it.
A lady I really admire put it perfectly the other day, when we were chatting about how the pandemic has affected people’s outlook and behaviour. She said, since last March, we’ve all been living our lives from the perspective of fear and threat. Our primary goal each day, particularly in the beginning of the pandemic last year, has been to get through the day and not die. Protect others so they can also not die. But having mercifully not died (and so very many have not been so lucky), it’s our responsibility and our birthright as human beings, to also live. Actually, purposefully LIVE! Living is not the same thing as not dying. Living is about more than just existing or keeping essential organs functioning. We need meaning in our lives, and to have that, we need other humans and something joyful to do, preferably both at once.
Thank you to all my other humans. The humans who have given me the gift of not dying yet. 🌈 And the humans who help me feel the joy of living my life. It’s time to get on and do it now. I’m really looking forward to doing it with you! 💗