“It’s the Best Cancer to Have”. MY ARSE.

This happens a lot when you get diagnosed with breast cancer. You get told “it’s the best cancer to have”. Family say it. Friends say it. Just people. Even oncologists say it. They say it because they want to make you feel better about that horrendous diagnosis. We even said it to our daughters when we told them about my diagnosis. Now, I don’t want to sound ungrateful or anything, and I understand the intentions are good, but now that I’m on the other side of active treatment, and staring down the barrel of long term hormone treatment, still feeling right there ‘in it’, I’m not sure how helpful it was, as I stand here now. 

Let’s just unpack it for a moment. Breast Cancer is the most common cancer in the UK with 1 in 7 developing it in their life-time (once more, just to drive that home, ONE IN SEVEN.). During Breast Cancer Awareness Month in the UK alone, 5,000 people will be diagnosed.

What this means, is that Breast Cancer is a loud, hungry beast that attracts loads of dosh for research and support services that ultimately benefits the patients.  Critically, the survival rates are good – nearly 9 out of 10 women will survive for five years or more. There’s a lot to be glad about, statistically speaking.

But here’s the thing, there are humans at the end of those statistics and, when people refer to the survival rates, even the Oncologists, they’re not telling you how they achieve those stats.

What you very quickly realise when you’re down there in the trenches is that the treatments are still surprisingly, almost comically, blunt. Caught early enough, the approach is still very much to cut the cancer out, and/or chop the cancery bits off the healthy bits, nuke the bits, and/or deliver a whole-body contaminant to poison the cancery bits, and then hope for the best.

80% of breast cancers diagnosed have a hormone receptor which means the cancer grows with oestrogen. This is what I have. Or had? Difficult to say. Now on the other side of active treatment, there’s no way of telling if there’s any more cancer floating about and this is why the treatments are so brutal. The solution in my case, following phase one active treatment, is to create an environment in the human body where the cancer can’t grow back. Ergo, strip out all the oestrogen. Let’s take aaaall the oestrogen out of that woman, starve the bastard cancer, job’s a goodun’.

The result is an extreme, medically-induced menopause more akin to chemical castration that throws the surviving human into a bit of a living shit-show. Honestly, writing it, it sounds like the ‘in theory only’ solution you’d come up with on a work away-day shortly after building the raft with 3 planks to get you across the metaphorical river. I mean, you wouldn’t would you…?

The current ‘survival strategy’ after the last batch of trials is to keep women on hormone treatment for ten years instead of five because data shows it cuts the incidence of recurrence by a third. It does not, however, impact on overall survival rate according to this report. Call me naive, but that just sounds like a really expensive delaying tactic, not a scientifically brilliant line of treatment.

Now, I am going to say this with caution because I am sensitive to the ‘triple neggers’ out there who don’t have hormone treatment to fall back on once they’ve gone through the un-holy trinity of surgery/chemo/radio, which is another point in itself really, but surviving ‘the best cancer to have’ comes at great cost to quality of life, physically and mentally. The triple-neggers live in mortal fear of breast cancer’s incurable return, and the hormone-pozzies are a shell of their former-selves, moody as fuck, dry foof, rattling around with crumbling bones, knowing full well that IF they can endure this bollocks for 10 years, there are no actual guarantees of staying cancer free after it. Don’t get me started on the incurables.

I am still in the very early days of my hormone treatment and at the moment it’s really tough going particularly from a mood perspective; CAN YA’ TELL?!!!!. The big question is, I suppose, could I have handled a bit more realism back then about what the future held? In truth yes, or a least not an untruth delivered to ease the pain then to make the future harder.  ‘The best cancer to have’ made it sound like it was the easy one. ‘The best cancer to have’ made me think it was something I could just just do for a bit and walk away from.  The reality is, I am in treatment now for the next ten years even with an early-stage diagnosis (it was in half a lymph node. HALF). If I choose to forgo that treatment (there’s a 1 in 4 drop out rate, according to my oncologist), I risk incurable cancer spread.

But Can I tell you something else ‘the best cancer to have’ does? It engenders future guilt in the breasties for struggling with their treatment. Seven months on, it makes me feel like I should put up and shut up because I’m ‘lucky’ to have this cancer. Suck it up sister, you’re alive!  ‘The best cancer to have’ leaves a bitter taste in my mouth

All cancer is shit. Whether you’re walloped by chemo, cut to pieces, having an organ re-shuffle, shitting through your stomach, radiation on your unmentionables, losing limbs, or drained of your womanly hormones, all the treatment is horrendous and society needs to quit with the ranking business. So what should people say instead?

When in doubt, go full empathy. Maybe something like, “what a bucket of absolute shite mate. I’m not gonna lie, you’ve got tough times ahead but one way or another you’ll get through it, mark my words, and I will be with you 100% of the way, even when you’re a moody cow. Fancy a foot massage?”.

This blog was written on the 1st Day of Breast Cancer Awareness Month 2019. I’ve only recently had my ovaries switched off and started on aromatase inhibitors so there was a bit of angry-typing going on here – I don’t want to diminish the sterling work done by everyone in the NHS and anyone who works in cancer research. Although, please do hurry up with the cure ‘yo? And as for the rest of you… for the love of god, know your normal. Now go check your boobs.

Shit. I spilt my feelings on the internet.

So anyway, there I was over the summer, standing there, outside the tent,  thinking, HOW did this happen? Cancer, that too, but the sharing thing. What the actual. Here’s how I overcame the overshare cringe factor. 

Historically, pre-C, I mean, I really wasn’t the person that shared their feelings online. GOD NO. We didn’t really do feelings growing up in our family, latterly at least. It was the 90s. Feelings hadn’t been invented yet. Unless it was ironic, sardonic, cynical, sarcastic, cloaked in dark humour, or even better, down right insulting, but in a funny-ha-ha-just-for-laffs kind of way, then it wasn’t worth the air time. It was colourful and competitive.  I rattled through my 20s and 30s, not quite stiff-upper-lipping it, but just being relentlessly positive. Always just fine thanks very much. Busy. 

And then the cancer thing happened and… I didn’t quite panic. I just knew that if I didn’t out myself I would ‘crawl into a horrible dank cancer hole’, is what I wrote in that first instagram post on my private page, “and that would be a pretty dark place to hang out in”. Plus, ‘I’VE GOT CANCER!!!’ is kind of on loud speaker in your head the whole time for the first couple of weeks and I really felt the need to get it out before I imploded. Outing the cancer and talking about it reduced its power and kept me out of the dark.

So, to blog, to instagram was a considered decision at the time, but I really started to question it over the summer. Partly because I’d reached the end of active treatment. Where am I going with all this now? But also because  it ‘aint always easy, this sharing business, especially when your chin’s on the floor. I found it much easier before, when I was pumped full of adrenaline and gratitude and just being carried along by the weird cancer train (at break neck speed, doors very locked, me, game face on at the window). And partly because when you’re low, everything really does seem a bit pointless doesn’t it? Especially blogging and the socials. Dark humour lost its place. “Today I am sad. Today I am less sad. Today I am glad. Today I am mad. Are you sad or glad? I think I am actually going quite mad.” 

My holiday read was  ‘How to Live’ by Sarah Bakewell, the biography of the French renaissance Nobleman Michel Eyquem de Montaigne. Paragraph one page one stopped me in my tracks. She’d nailed how I was feeling about it all.

The 21st Century is full of people who are full of themselves. A half-hour’s trawl through the online ocean of blogs, tweets, tubes, spaces, faces, pages and pods brings up thousands of  individuals, fascinated by their own personalities and shouting for attention. They go on about themselves. They diarise, and chat, and upload photographs of everything they do. Uninhibitedly extrovert, they also look inward as never before. Even as bloggers and networks delve into their private experience, they communicate with their fellow humans in a shared festival of the self.

Well, quite.

I mean, who wants to contribute to that doleful picture? When very low (and cynical), all around me, all I saw was cancer giving people permission to talk about themselves, ad nauseam, under the guise of ‘raising awareness’ or helping people.  

I read on. I learned that Montaigne is in fact credited as the original life ‘regurgitater’. Following a near-death experience, (which he wrote about at length and in such a way that me thinks he might also have been the original Drama Queen), he came to two key conclusions that helped him live better.

First, that the key to stop worrying about death (he was obsessed for a while) is to stop worrying about death. You’ll know that to do when you get there, it almost certainly won’t be as bad as you think it will be, and you’ll probably be relieved by the time it comes.

Second, he started writing. About everything. Reams of stream of consciousness-style essays that quite often went nowhere or came to any conclusion. Observing, meandering, ruminating, all the while trying to make sense of the here and now and him in it. It made him ‘pay attention’. He regularly forced his mind out of thinking to pure observation and then wrote about it. Early mindfulness I suppose. A lot of it wasn’t even very good, apparently (which gives me hope). The most important thing is, his writing helped him rise out of his personal ditch. 

Reading those first few chapters got me thinking and in part (along with a general lifting of mood) helped me feel better about publishing blogs again. And better about reading everyone else’s ‘festival of self’, appreciating and participating. What he did in the 15th Century really isn’t that different to how we do things now – it’s just now we have more tech.

It somehow made me feel less like I was contributing to the horrifying narcissism of the modern social media-led world and more like a contemporary version of what we humans have been doing for a very long time. “Writing about oneself to create a mirror in which other people recognise their own humanity”. Better.

So, I’ve come full circle. Although I won’t always find it easy, I’ve decided I’m kind of OK with this blogging malarky again. For writing for writing’s sake, not expecting anything of it, or worrying about what it makes me. It’s just my own little way of getting through this weird old time and keeping my head above water.  It makes sense to get it all out on the table while it’s happening and while I’m feeling it, because that’s when it matters to me and who fucking cares if it’s a bit.. well… sharey. The truth is, it doesn’t even really matter if no one reads it. This is the first blog I’ve published since June and I’ve got a stack of writing in my book. So. Here we go. I’m strapping myself in. It’s time to Be More Montaigne. 

P.s. Can I just add one caveat to that? if he turns out to be a total pillock, well, let’s just bear in mind that I haven’t finished the book yet?

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.