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.

Doing the Radiotherapy: An Unhelpful Guide

Ed, an old mate from advertising days called me up the other day to ask me what radiotherapy was like. I was on his very niche call list of ‘people I like who’ve had radiotherapy’ because he might have to face it himself soon. So, this is for Ed.

The first thing you learn before you start having radio, or any cancer treatment for that matter, is that everyone reacts differently and there’s no way of predicting how your body will respond. So, you’ll get a list of potential symptoms, which you may or may not get, and you’ll promptly disregard said list because you just assume that this is a list for everyone else and you, for some reason, are exempt. Probably because the list is ‘exaggerated’ or, more likely, you don’t want the symptoms.

And then you might find yourself actually quite liking the routine of radiotherapy, or at least coping better than you might imagine. You’ll have a block-booking of sessions, delivering a whopping dose over time, broken down into smaller hits your body can tolerate. You’ll trot in each day and leave and, for the most part, probably feel OK.

Personally, I quite liked radiotherapy. I liked the routine of going in every day, even though it was a different time most days and nearly an hour in to the hospital and an hour back. I took good coffee. Dressed nicely. Lippy on. Radio 4 in the car. Bought a crap magazine on the way in, got angry at the magazine on the way out for being crap. I had a pink ticket for free parking for the duration (which always made me feel like I’d got one over on the general population, one fleeting moment). I felt well. I had that feeling of doing well, marking them down day by day, conquering. I started to take personal credit for the radiotherapy machine blitzing the cancer cells and personal pride built daily. I bought myself little sweet treats from WHsmith on the way out. Often chocolate. Go me.  One more done. Little kick of the heels on the way out.

I liked the big radio machine thing. A-sexual, futuristic and bulbous-cute, and usually called something less friendly but reassuringly techy like Varian 6, it was a lot less intimidating than I thought it would be. Think baby of Starship Enterprise and Wall-E.

Invisible gamma rays blast invisible cancer cells, painlessly, noiselessly, quickly, just in the bits of you that need it, and off you trot again till the next dose (gallopy gallopy). So far as treatment goes surely it’s the kindest, the one that makes the most sense, none of this complete whole-body fuckery like chemo or hormone treatment.

There is that tits out business though. I arrive and I’m directed to a bit of wall in the radiotherapy room that has a modesty curtain to de-robe. I strip to the waist and hang my top and bra on the hook. I am given, for the first few sessions, basically a bit of kitchen roll to cover my boobs for the short walk (4 paces tops) from the shelter of the modesty curtain to the radiotherapy bench. From there, you hand the piece of kitchen roll back to the radiographer that gave it to you 4 paces previously, & lie down. He or she puts the kitchen roll in the bin. There comes a point where I don’t bother with the modesty curtain or the kitchen roll but it never stops feeling odd walking those 4 paces topless across the room and doing “Good Mornings” and ‘how was your weekends” . Just less absurd than going through the kitchen roll rigmarole.

Arms over head in the stirrups. boobs out. Your team need to line your body up to the lazer beams to make sure Varian 6 has been rigged up to your dimensions.  You’re not supposed to assist in any way so need to master the art of lying there like a lifeless naked cadaver whilst they inch you about. Your people have to get in nice and close here. Sometimes you can feel their breath on you. Sometimes you realise you haven’t shaved your pits or have forgotten to wear deodorant. Or they, evidently.

And then everyone evacuates the room to the loud beeps of the ‘last man out’ button ( “saaaaave yooourselves”), and you are left with your breathing and your thoughts. I kept it basic. Best not to think too much about what’s really happening.  What’s for lunch? My fingers have pins and needles. I need a wee.

And then on your last day, you might, for some unfathomable reason, which takes you completely by surprise, because obviously you’ve been doing  perfectly well, cry. Perhaps because you feel like these lovely amazing NHSers that you’ve got to know are like your saviours and you’ll never see them again, and you’ll make some joke to that effect, that you hope you don’t, see them again I mean, even as you’re saying it knowing full well it’s probably been said 1000 times before and everyone who says it thinks they’re really funny for saying it. But you can’t think of anything else to say because obviously it’s about more than that. Or you won’t. And then when you leave, you’ll either feel really up-beat and air-punchy, or you might just feel a bit flat and think, “right then”.

And then your skin will probably get worse, that’s a certainty, because that’s the one thing you DO remember the nurse saying, that it will get worse before it gets better.  It’ll either be awful, less than awful or maybe OK. You’ll either be a bit tired or absolutely shattered, maybe a bit in between, but most certainly occasionally wiped out and not quite your usual self, but no one can advise you which way it’ll go, you’ll just stumble over your own symptoms when they stop dead in front of you. And that will be annoying because you thought you’d got away with it and you wish you’d taken the nurse seriously or at least not chucked the bloody leaflet in the bin.

But one way or another you’ll come out the other side of it, and after a while, realise that what just happened feels bigger now than it did then and you’ll think, “well, that was alright wasn’t it? We did it, my body and I”.

And you’ll feel quite proud of yourself. Which you should.

And that’s radiotherapy. Well, it’s how it was for me which means it won’t be like that for you. And it’s quite boob specific, so probably not that helpful, given you don’t have breast cancer. But otherwise, hope that helps a bit Ed.

Good luck mate,

Shiv x

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?

I need to talk about hair.

Yesterday was my first meeting with an oncologist and I am PISSED OFF major. I woke at 5.30am then eventually launched myself out of bed at 6.15 to stop the churning. Churning mainly about all the stupid things you’re going to say to try and make me feel better about some shitty news from yesterday. I know. There you were just lying in bed somewhere fast asleep and I was already angry at you for all things you haven’t even said yet. So look, here’s the deal. I’m going to unleash my rage at you, then tell you what to say, and then everything will be OK. Got it?

My Oncologist broke it to me yesterday that I am going to lose my hair.

DON’T say, “It’s OK, it’ll grow back” because this is me right now.

Fleabag, Season 2, Episode 5. Filmed on my phone in the downstairs loo at day break this morning. Lights off. I needed Fleabag to console me this morning.

I know I prepped for this meeting. Yesterday’s blog was all about me being OK with the chemo, but through all that mental and emotional prep,  there was just this little itty-bitty blind spot.

Hair.

I just thought I’d cold cap my way through this one. I was going to do cancer, sure, but I was going to do quick and easy cancer. Cancer for softies. Y’know, with nice tolerable, gentle chemo where I get to keep all my hair, and click my heels through summer like a smug cancer twat endlessly celebrating my not-terminal diagnosis and maybe just having a wee bit of time off work, to you know, convalesce with style, but otherwise winning.

With hair.

I don’t do crying at these Big Cancer Meetings.  But yesterday it all fell out of me.

“I’m so sorry”, I sobbed to the consultant after she’d broken the news, “I know it’s only hair”. She put her hands over mine across the desk (is it just me, or did she mist up a bit..?) .

“No.”, she said, “I understand. You have great hair” . (And how much do we love the Oncologist right now?).

And before you’ve even had time to scream “shut the fucking fuckity-fuck-fuck FUUCK OOFF” into the abyss, I was signing consent forms for this kind of chemo and that kind of chemo and weeping again and saying, “it’s just.. I’m 42 and I’ve only just worked out how to do my hair”.

And once more Fleabag, just to drive it home.

So. I am in pre-emptive mourning for my hair. Don’t console me. Don’t try and make me feel better about it.

Any “but it WILL grow ba…” will get a “ZIP IT”.

Don’t begin any sentence with “well at least…”.

But you can do this;

“Shit Shiv, not the hair! You have amazing hair. I’m gutted for you”

“Babes, I love you and I love your hair. I’m crying too right now”.

Celebrate my hair mournfully with me. Respectfully, for about 15 seconds, hands clasped, one eye on the clock.

And then let’s all start looking at interim comedy chemo cuts. I am not letting cancer take my hair. We’ve got to get there first.

It’s Scary Cancer Fact Friday!

So friends, I’ve got an Oncology meeting coming up so I’ve been mugging up all things cancer. Yay! I thought I’d share a few key scary cancer facts that I’ve learned since moving on over to this side of the cancer fence. Not to terrify myself, mind, or you for that matter (we can all do without unnecessary frights) but just for a healthy dose of realism in amongst all the gratitude as I go into  Phase Two of treatment  (the shitty phase involving hard drugs, but not the fun kind).

Also because, WOW, I’ve realised how little I knew about cancer before this. And, frankly, how little so many non-cancer people know too.

This is happening a lot, for example;

Friend: I guess you’ve given up sugar to starve your cancer?

Me: Fuck off and pass the damn cake.

And this;

Me: OmiGOD, did you know that if the primary breast cancer spreads to another part of your body it becomes secondary and THAT’S INCURABLE (actual horror face)?

Friend: That can’t be true.

Me: Fucking well is.

OK, so that’s the first horrific cancer fact out of the way but I’ll elaborate a bit more because, this, as well as the other has really helped me be kind of ok with the idea of doing chemo, a thought too horrific for me to even contemplate in the early days (ANYTHING BUT THE CHEMO!!).

1. Primary Cancer is curable, secondary cancer currently isn’t. Secondary cancer is when the cancer from the original site spreads to another part of the body., or metastasised.  All it takes is one tiny little cell to break away from the primary tumour, find its way into your blood stream or lymphatic system and then latch onto another organ and start growing. For breast cancer, the next go-tos are often the lung, liver, bone and brain.. Some secondary cancers are curable, but metastatic breast cancer isn’t.

2. It can take years for a cancerous tumour to grow to a detectable size.Some cancers are really aggressive and fast growing. Some are slow growing and it can take quite a while  for one cancerous cell to become a mass** that can be felt or detected on a scan or even to present symptoms you might think worth going to the GP about.. So that means, yes, for slower growing cancers (like mine) you could be blissfully unaware of cancer until such time that it decides it’s time to present itself to you. By which time, if you catch it early, it’s primary, if not, it’s a metastasised secondary. See the first point.

3. There is currently no test or scan to reliably detect Micrometastases in the blood stream or lymphatic system.*** Micrometastasis refers to the tiny cancer cells that have broken from the main tumour but not yet formed their own growth in another part of the body. In my case, cancer cells were detected in one of my sentinal lymph nodes following a sentinel node biopsy at the time of my mastectomy surgery. That means, the node was physically removed, cut open and examined in order to find the cells. These cells were not detected by all the presurgery ultrasound or MRI scans. And they were MACRO not even micro – but still just invisible cancer sittin’ there playin’ the long game.

4. Your immune system alone is not enough to kill cancer cells. Cancer wants to win at all costs. Markers vary greatly from cancer to cancer, and researchers are learning more and more about this, but the long and the short of it is that cancer has worked out ways to fool our own immune systems often by tricking our  immune T-cells into not recognising it as an enemy and therefore fighting it. Antioxidants aren’t going to touch that bastard. It also knows how to spread and how to hide.

5. Chemotherapy kills cancer cells, but not your other cells. Chemotherapy drugs, the treatment demon I’ve been a bit terrified of, stops those insidious cancer cells from growing and dividing and eventually they die. The drugs also affect the healthy cells in our body, but these eventually recover. The chemo is all about halting a recurrence.****

Call me a masochist, but this is me squaring up to cancer’s worst so I can stomach the treatment options. Also kind of handy for you guys to know before you wave your little cancer-curing tincture at me and suggest I try meditation to un-think my cancer into oblivion.  And this is coming from a kimchi-eating, green-juice guzzling, yoga-loving, occasionally-meditating turmeric-junkie who has consciously been re-populating her microbiome for the past year.

I am actually heartened by the kind of clinical trials being funded by charities such as Cancer Research into things like turmeric and asparagine, and it’s entirely possible that the future of medicine lies in a more holistic, integrated approach with traditional and functional medicine working together, but when the chips are down, I am going for treatment with clinical evidence on long-term prevention of metastatic breast cancer.  And if there isn’t a randomised double-blind clinical trial with evidence to support the new miracle cure, it ‘aint on the table.

In short, I’ll take the damn chemo thanks very much. Cake on the side.


REFERENCES:

** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 9.

**** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 132.

*** According to my team, there are clinical trials currently taking place involving methods of detecting cells for triple negative cancers but these aren’t widely available.

I have referenced Cancer Research or Macmillan for definitions that might be directly helpful to link to for this piece. I have also strongly drawn upon Greenhalgh and O’Riordan’s book The Complete Guide To BreastCancer: How to Feel Empowered and Take Control . It has been a key resource for pulling disparate information together which has been key in building the bigger picture and preparing for key stages of my treatment. Cancer treatment teams tend to drip-feed information which is aligned with the treatment process. This can help people cope and process difficult information in small chunks. If however, you are the type to know more and read ahead, then this is a great bedside bible.


Me. But Better: Surgical Thank Yous.

As I type, it’s nearing on five weeks since surgery and people have been asking how I’m doing ‘down there’. The following notes are thank you letters to my surgical team which will explain the situation best.


Dear Nicky,

I quite literally feel like I won the surgical lottery. Hit the jackpot. I know it wasn’t quite like that. You were chosen for me. But I feel so damn lucky to have been your patient.

Even past the bruising and the swelling, I see a breast that looks just like mine. It IS mine. I have my own skin. I have my freckles. I have the same shape, and I also know that what is inside is mine, and is me.

So, I don’t feel at all like I’ve had a mastectomy in a funny old way. It just takes a little re-framing of the situation – I’ve had something really really horrible taken out of my breast, and a bit of me from somewhere else popped back in – a re-org, as it were, a tissue re-shuffle.

My boob is fabulous and SO ARE  YOU.

Thank you. You are, actually, the best.

Siobhann


An edited version of the thank you letter penned from my hospital bed to my Consultant Breast Reconstruction Surgeon.


Dear Dan,

It can’t be easy being registrar when the consultant  surgeon gets all the damn credit for the boobs. I wanted to write and say thank you for the bits you probably don’t get thanked for very often. Like the belly button bit.

I’ve always had what could be conservatively described as a prominent outy. An ‘out there’ outy. An extroverted, flamboyant outy verging on body-political ambitions for abdominal take-over.

Then with two pregnancies, dear GOD, my belly button grew to such grotesque proportions it cast its own shadow across my abdomen at high noon.

And so I resigned myself to one piece swimsuits.

Then came breast cancer-reconstruction surgery. Once I’d gone home and the swelling had settled in my abdomen, I did not, in a million years, expect to wake up one day, lift the sheets and look down to ‘New and Improved Shiv’. Not only a svelte new abdomen but what appears to be a new and improved belly button. HELLO YOU!

And perfect neat scars, healing nicely thank-you-very-much due to some mighty fine stitch work at the tail end of a long and exhausting surgery sesh on nothing more than bean stew.

For the new and improved me, I salute you Sir. Your belly buttons ROCK Dan. Thank you.

Siobhann


My draft letter to Dan, the registrar who played a key part in my surgery.

So people, really, don’t feel sorry for me. I am going to wang on and on about the unexpectedly fabulous new me thanks to awesome surgery by awesome people who work for the NHS, all in the name of ridding me of the cancer and putting me back together again. I will go so far as to say I may become intolerable. I may even resurrect that belly button ring from my late teens. Hold the phone, I might even wear a crop top this summer.

Watch out world, this is Shiv version 3.0.

I’ve Got Cancer, And Every Reason To Be Glad.

I’ve been wanging on about the Breast surgery for a while –  it’s time to talk about the cancer bit of my Breast Cancer.

This week, my surgeon confirmed that a bit of cancer was found in one of the sentinel lymph nodes that was removed at the time of my mastectomy surgery. I was told that I’ll definitely have radiotherapy, and chemotherapy is highly likely. I left that meeting on cloud nine. Despite the fact that my cancer has spread from its original home in the duct, to my breast tissue (making it ‘invasive’), and thence to a lymph node,  I am still at the ‘curable’ end of the scale. It’s all relative you see. I’m not just looking on the bright side here – there’s no forced positivity when you come out of an appointment and know your life isn’t hanging by a thread.

I had “the cancer fear” much like anyone else. But once you’ve GOT the cancer, the fear scale shifts. All cancer is bad. But there’s bad cancer, and there’s really fucking bad cancer and all the bits in between really matter.

It’s grotesquely over simplified, probably highly offensive, and almost certainly inaccurate, but this is how I understood how to position my own cancer before going into the meeting.



At each point of not-knowing, early on in the process of diagnosis, when I  knew I had “something’ but I didn’t know what the something was yet in wait of the tumour biopsy results, and then again waiting for lymph node biopsies,  I had moments where I mentally placed myself up and down this scale, dialling the fear-factor up and down accordingly. On the left, (American accent) “I can do this. I am going to nail this fucking fucker”. To the right, “Oh fuck. I’m fucked.  Completely and utterly fucked” (definitely a British accent. Probably northern). Squaring up to face death. Most of this happened in my mind , and only fleetingly. I was trying not to think, you see, dealing only with the information in front of me, but the thinking was happening without me even thinking I was thinking it. Damn brain.

Following my last meeting with the surgeon, as of Wednesday the 3rd of April 2019, in spite of this early spread, I am still firmly down at the left hand side of that shitty cancer spectrum.  I have a fairly common cancer, a treatable one, and It’s only been found in one lymph node and that’s now out. The working assumption is that surgery has nailed it, and radio and maybe chemo, plus further hormone treatment,  will do their magic to blitz anything else sinister lurking about and prevent a recurrence (with the understanding that treatment does not come with guarantees). It may not seem like it, but this IS cause for celebration. So many people aren’t this lucky at this moment. Some people, with very few symptoms, get terminal off the bat.

And there’s more.  The gladness comes from something much bigger than “shit but treatable”. My friend Emma pointed me in the direction of an article by George Monbiot, columnist for the guardian, who last year wrote about his prostate cancer.

In his own reflections on being grateful for his diagnosis, Monbiot goes wider in his assessment and creates his own scale – The Shitstorm scale. The Shitstorm Scale doesn’t just consider what might have been had the cancer not been caught early, but also any number of other tragedies and life disasters. It also considers within it other life circumstances to assess his position on the scale, and by his own calculation he’s a 2/10 as opposed to a 7/10, the latter being where he’d be placed on the Prostate cancer scale. Now that’s positivity for you.

My wider circumstances aren’t dissimilar to his; I have the NHS. I have a roof over my head. The love of a bloody good husband. My daughters. Family, here and abroad. A network of people – an extended ‘family’ of friends, neighbours, even acquaintances who hold us aloft, champion us, send us good vibe texts, hug emojis and playlists, and leave Shepherd’s Pie on the doorstep. And a rocking therapist. Helps.

Like George, when I look at my cancer for what it is, and in the context of a Big Life around it, I am one of the lucky ones.

Monbiot also writes about not letting fear rule your life


“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

George Monbiot

Making ‘cancer chat’ a daily reality through social media and this blog has helped me enormously.  It’s important we all talk about it. Not in hushed tones. Not with pity. Not with fear-faces. But just for what it is. Something that needs to be faced, my new reality, for the time being at least, and yours in part as someone who might know me. Bring it into the light and trust me when I say there is a hell of a lot to be glad about right now, and a bloody good life to be lived as I move through treatment. So let’s just crack on shall we?

{With thanks to George too, for unwittingly helping me to crack the title of this post. I totally remixed you Monbiot}

Seven Days Post Op: A progress update & wise words from my Anaesthetist

This post is dedicated to Jane Quinlan, my wonderful Consultant Anaesthetist. She’s not dead by the way, I just wanted to dedicate it to her even though she’s alive and unlikely to read it. 

Jane, apart from being bloody brilliant at what she does, is proper funny.  In meetings with her, there were times I was mentally panning back with a camera and thinking. “You could script this. She’s good!”. On the day of surgery, I told her how much I appreciated her humour during what was essentially a pretty dark time. She admitted, shortly before I went under, that it really depended on the patient and sometimes she had to tread very carefully. This in itself, to me, was hilarious. So much potential! Imagine the scenes of the anaesthetist taking dark humour a bit too far?  It’s just so British comedy TV! 

As with my surgeons, I  took a photo of Jane “the funny one” to show the girls. “And this is Jaaaane, Mama’s anaesthetist” (maybe one day they’d like to be an anaesthetist?)
Daisy: What’th an anaeththetitht (tough, if you have a lithp)
Me: Hmm. Anaesthetists put people to sleep. Jane will give me an injection to put me to sleep before the operation.
Daisy: Silent, but with a face that said. “That’s a fucking stupid job”.

Sorry Jane, it’s a tough one to explain to a 6 year old. I should have said more about the pain management side of things.

Anyway, back to you people, this next bit wasn’t funny but it was really really helpful and came in handy yesterday. 

Yesterday, Monday, I was DOG TIRED. Weak. Just felt “not well”. Couldn’t do. I occasionally made it downstairs, but then crawled back upstairs just to collapse and disappear into my bed. Bed was the only place I wanted to be.

It was in stark contrast to Sunday. Sunday was home-day. I got up early. I showered. I dressed. I EVEN PUT PANTS ON (first time since Tuesday. As I write, it’s just occurred to me that I went IN to pre-op with them on, and came out with them off. I won’t think about that now). Tom and the girls helped me pack up my room and we all trundled home. It was a seriously happy day. As soon as we got back, we all made a bee-line for the garden and I sat in the sunshine and had a cup of tea and a cup cake. 

Jane had previously warned me, that when I wake up from the op, I might feel like “I’d been hit by a truck” (BRILLIANT bedside manner). I didn’t really feel like that when I woke from the op, but I REALLY felt it yesterday. The truck had hit me six days later. I woke with it. I wasn’t in pain, but I ached. I couldn’t stand for long and could only walk small distances. Everything was effortful and less than I could do the day before.

But I didn’t feel pathetic or down on myself because wonderful Jane (#anaesthetistcrush, now there’s a new hashtag) had drawn this for me.

Yes, well, you know what they say about the hand writing of medical people

“People Don’t Get Better in Straight Lines. It’s a wavy line with some good days, and the next day may be not so good, but ALL progress”

Jane had told me this verbally, but I had asked her to scribble it in my book (to be fair, I didn’t think she’d ACTUALLY scribble). Yesterday, I clung to it. I really didn’t anticipate feeling this awful. Instead of thinking, “fuuuuuuuck, this is shiiiiiiiit” all day, it allowed me to just move through it knowing tomorrow might be a better day.

Today so far is a really good day and I’m listening in. I woke up FULL of beans and am now back in bed for my afternoon nap. It’s a good thing because today is hubby Tom’s birthday. We’re going to make cake together (me reading the recipe and directing from the sidelines, probably).

So thank you Jane, your little scrawl in my book got me through a tough day and will get me through every subsequent post-surgery dip. This morning I remembered your parting words to me last week. “And remember. Strictly no washing dishes or vacuuming for two years”*. If you get sick of putting people to sleep, you could always try your hand in comedy.

*I hope I haven’t ruined that line for you by publishing it. You might need to work on a few more. Always good to have fresh material to pull out the of the bag.