LLALALALLLALLLA (fingers in the ears?)

It’s my first #BreastCancerAwarenessMonth. It’s all suddenly got reeaaaally loooooud on the cancer front and I am feeling an overwhelming urge to stick my fingers in my ears and dive under the duvet. For a start, is it just me, or does it feel like one huge echo chamber of cancer people making each other even MORE terrifyingly aware than they already are? Are the non-cancer peeps even listening?!

I mentioned on the socials the other that it hasn’t been easy of late. I’m riding some pretty dramatic.. well.. I was going to say “highs and lows’ but it feels a bit more like ‘troughs and ravines’ at the mo where just reaching sea level represents high ground. I’m working through it and doing what I need to do. Constantly thinking about cancer (cancercancercancerCANCER!!!) is one of the things that needs to be managed. Steering clear of the ‘gram can help but paradoxically, it’s also where to go to find people on the same wave length that can make the inner terror feel, well, normal.

At the moment, though, it is REALLY CANCER LOUD with every Thomasina, Dick, and Harriet with Breast Cancer coming out to bang the Boob drum. Quite rightly. It is Breast Cancer Awareness Month after all. Out come the personal diagnosis stories, the tales of recurrence (eek), incurable spread (gut-drop), the scary facts and stats, the jubilant smiley posts about living a great life with incurable breast cancer (hmmmm), all of which is really important for the unworried well to hear, but unwittingly feeds my current Fear Modus Operandi.

It’s particularly loud at the mo of course because I follow a lot of people who happen to have cancer, breast or other. The cancer people I follow also follow, and are followed by a lot of other people with cancer. Lots of us follow each other. These people, the very-breast-cancer-aware, are sharing and commenting on each others’ posts, sharing awareness campaigns that they happen to be a part of, or their friends’, sharing breast cancer product promotions, blogs, campaigns, tweets, fundraising initiatives. I see the same content being recycled, daily. (As a brief aside, so enmeshed are the cancer aware in cancer awareness, that they opine on the nuances of cancer awareness. Mary Huckle, in life-long treatment for secondary breast cancer, wrote an apologetic instagram post today about ‘going pink’ this Friday because of the general outrage around the pinkification and pinkwashing of breast cancer.)

Anyway, back to this. The big question is, is this big Breast Cancer machine just feeding itself? Do the really important parts of Breast Cancer Awareness Month actually reach the people who don’t have breast cancer?How many non-cancer peeps have read a Breast Cancer Awareness post on social media and taken it in in some measure, shared or retweeted, checked their boobs, donated to cancer research, attended something that benefits a breast cancer organisation or charity? What difference will Breast Cancer Awareness Month make to them, or you, this October?

If that reads like an admonition, it’s not meant to. If I wasn’t being so lazy, I’d look up fundraising data and awareness stats and correlate with diagnosis rates. I’m pretty sure they’ll prove it’s all working. I am aware, as I write, I might be sounding a tad cynical in the face of this great force for good. Maybe it’s the medical menopause talking (it’s a full moon too y’know lols). Perhaps I’m just feeling a bit weary of it all. If you’re reading this, and you have breast cancer, you might be feeling the same. If you don’t have cancer, do me a solid, and please make it all worthwhile for you. Eyes open. Drink it in. The two best outcomes of this month are 1. Behaviour change (checking and doing something about it if you notice a change) and 2. Donations or fundraising to fill the research coffers to help find a cure.

“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.