What Cancer Feels Like

I started writing a blog on ‘what cancer feels like’ the week my chemo was due to start. Then chemo got cancelled on May 14th. I’d like to say we were delighted. Joyful. Over the moon. What happened next was almost inexplicable. I plummeted and, as a I square up to the realities of hormone therapy, only now just feel like I’ve emerged from a big cancer hole. This is not about what cancer feels like in the body – my kind of cancer, at this stage, is the silent type  – this is about what it feels like in your head.

Quite early on in the diagnosis, the therapist introduced me to idea of seven stages of grief (shock, disbelief, denial, guilt, anger, depression, and acceptance) as applied to cancer to help me make sense of what was going on in my head. I was basically all over the shop.

It turns out, the stages aren’t linear.  The thing is, I feel like I have all this lot up there, personified, haring around inside my head, out of control, colliding in to each other, re-bounding off the inside of my skull, a wild look in their eyes, most of the time. Even now. It’s just sometimes they’re all a bit quieter. One or two are, say, napping, or just being polite and taking a back seat for a spell.

The cancer train moves fast in these early months (I was diagnosed mid February) and each stage presents new information. And the train does not move in straight lines, often presenting surprises or a shift in the plan. Being drip- fed is just part of the process of diagnosis as your cancer reality is unfurled through a series of tests, on the one hand a ‘kind’ way to be delivered horrific news, piecemeal, to give you time to digest it, on the other each a series of ‘shocks’ that come with their very own Homer-Simpson-esque internal scream, with never quite enough time to really get a handle on  it before the next shock lands.

So, the ‘no chemo news’ , however positive, just became the latest in a series of shocks to contend with. There was a lot to dismantle. And off they all went again – disbelief (WTAF), denial (I called the office to check it wasn’t an admin error), guilt (for all the people going through chemo), anger (you bastards! Couldn’t this have been managed better?!), and so on. There were fragmentary feelings of relief. Acceptance, I thought. Not quite – we had a ‘No-Chemo Hot Dog Party” to celebrate and invited everyone over who had been so kind during the surgery recovery phase of treatment, but the reality is, I had a smile plastered on and I felt numb and wretched. Got drunk.

In sum, parking the grief-psychobabble bit for the moment, actually, the best way of describing what cancer feels like, choosing the words of the many cancer people that came out of the wood work when I did the ‘chemo has been cancelled’ post on instagram was, it is all, quite simply, a monumental head fuck.

The next head-fry is hormone treatment. When I first heard about it, in my first diagnosis appointment, my breast surgeon simply described it as treatment to suppress my oestrogen because I have a hormone positive cancer, which means it grows with oestrogen. Suppress the oestrogen, the science says, and you reduce the chance of any lurking cancer cells from growing anywhere else. “FAB” I thought, ‘I can handle that’. Then one day, listening to a “You Me and the Big C” podcast, I stumbled across what that meant. Menopause. Early menopause. I just stood there, in the kitchen, speechless, mouth a gape, cup of tea in hand. I just hadn’t made that link. And I wasn’t nearly ready to hear it. So, I did what any self respecting person receiving information they don’t want to hear does – I buried it like a dog buries a bone, half an eye on it as I contended with the other stuff that was right there in front of me, knowing I’d come back to it when the time came. When it was all nice and stinky.

And so now, with chemo off the table,  that time is upon me. I started hormone therapy on Monday 3rd June (10 days ago, as I type) with an implant of a drug called Zolodex.  It was injected into my abdomen with a needle. According to Oncy, I will have this injection every month for the next ten years or so, suspending me in a post-menopausal state until I go through menopause naturally.

Within three weeks of the first injection, apparently, I will have the oestrogen levels of a post-menopausal woman. After the second injection, I will start taking a drug called Letrozole which is an aromatase inhibitor . It stops other areas of the body from producing oestrogen and it comes with it’s own shit-list of side effects . “Letrozole has shown to reduce eostrogen levels by 98 percent while raising testosterone levels… Usage above 2.5 mg/day [I will be on 3.5mg/day] is known to potentially temporarily kill sex drive“. You essentially end up with the oestrogen levels of a very old lady. The biggest risk is osteoporosis, so I will be on high dose calcium and vitamin D.

In short, this isn’t every day menopause. It’s extreme menopause. Hard, fast, intense, menopause especially for hormone-positive breast cancer people once they’ve climbed out of their bucket of cancer shit and look to long term prevention.

When I got diagnosed, it’s true to say I was riding a strangely incongruent gratitude high. When I wrote about the mastectomy-reconstruction surgery, I was oozing with genuine feelings of positivity around that experience. When it came to the prospect of losing my hair, yes, I cried and raged for a bit, but then was able to make peace with it by donating my locks and raising money for The Little Princess Trust, something I am still really proud of. I have, however, been struggling to make peace with this one. Not even the brilliant Kristin Scott Thomas scene from fleabag has offered much solace.

Yes, I am lucky to have this option in the secondary/recurrance prevention tool kit. Yes, I know it would happen naturally anyway. If I was going through chemo, it’s highly likely I would have been rendered infertile and forced into menopause anyway. Yes, perhaps, it won’t all not that bad . And yes, I know I will get used to it eventually and it will become that new fucking normal that all the cancer people talk about.

For the moment however, I feel robbed of my fertility, sexuality, femininity, youthfulness and am railing against it, grieving for my poor repressed little ovaries, yes, the ones that are trying to kill me by feeding their oestrogen to the cancer (TREACHEROUS FUCKERS), all the while grappling with the unconscious bias against post-menopausal women I didn’t know I had until my mind started conjuring up images of myself in three weeks time, an image fed by the worst of the side effects list, suddenly all hysterical with dry skin, thin hair, aching joints, acne, a spare tyre around my middle, sweating profusely, a dry mind AND a DRY VAGINA (I’m going to come back to this one. Worth exploring in more depth).

And so here we are. I am sitting here, like a duck, nine days after the first injection, and now only three weeks from the second, waiting for the first side effects to kick in and I am NOT being very grown up about it. I have committed myself to becoming fast-tracked-peri-soon-to-be-post menopausal Moaning Myrtle, wailing dramatically and crying floods of tears as I chop vegetables violently (anger?). I have started scouring the internet for a summer wardrobe re-boot, and I seem to be gravitating to clothes that ought to be in the ‘clothes for babies’ section (denial?), all the while feeling sky-high guilt given so many comrades have it so much worse, for those who didn’t get to have their babies the way they wanted to, and still, three months since my surgery, thinking, “is this actually really happening?”.

Head fuckery of the highest order, this is.

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12 thoughts on “What Cancer Feels Like

  1. Hi Cuz, glad you to see you’re blogging again and, wow, latest blog is a triumph despite or maybe because of the grim but strangely fascinating subject. Hope you’re ok. much love xxx

  2. Siobhann, thinking of you loads & sorry it’s so shit!! Your writing is fab & your fighting spirit is remarkable, you go girl!

    1. Thanks so much Megan. Would love to do drinks with you and Katie Poohs soon. This girl is need of distractions xx

  3. Everything about this sucks, except your writing. Smiling through tears.

    p.s. Love the references to previous blog posts. You really are good at this.

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