The Fear: Post Cancer, the Past and Finding Answers in Harry Potter.

I’ve only recently added this up; In Australia, my home country, a dead mother in the year I turned 11. A dead father by 13. That weird epilepsy phase in London in my 20s that, before I was medicated, involved tonic clonic (“grand mal”) seizures in really awkward situations, like when crossing the road (I once launched myself into slow, oncoming traffic in Fulham, a car broke my fall) or whilst running to work in Knightsbridge,  (I landed head first on the pavement, you always land head first during a seizure, but on my chin this time, judging by the size of it afterwards, rupturing my ear drum in the process). A couple of miscarriages in my early 30s, and two births that probably would have killed me in medieval times. And now, with a breast cancer diagnosis in my early 40s, you’d be forgiven for thinking I’d be on the wrong side of natural selection were it not for the grace of modern medicine.

I was diagnosed in February with a 4.7cm Grade 1 invasive ductal carcinoma, lymph-node positive, and  like many in the post-treatment phase, sitting with the lows and trying to wrestle fear to the ground, the fear of incurable metastatic return in another part of my body. It’s proving to be a tad tough, shall we say.

The goal, the sweet spot to aim for, after cancer treatment, apparently,  is to live like you’ve had a massive wake up call and switch your mind off to the ‘what ifs’. This brush with death is often positioned as a gift. Fast-tracked enlightenment. A crash course in Buddhism with suffering built-in to the offer. 

The thing is, because of that other stuff on the list (y’know, ‘the past’), I’ve always had a keen sense of my own mortality. But I didn’t live in fear. In my 20s and 30s, I lived hard, fast and full, often choosing to do things that took me to the keen edge of fear. Bungy jumping. Crossing the Bay of Biscay, notorious for storms, in a small yacht. Hiking a section of the GR20, a high altitude walking trail in the Pyrenees, on my own and without a tent. (In truth, sleeping wild was partly because I couldn’t map-read well enough to find the mythical Shepherd’s Huts along the trail but that’s another story). I’ve always felt lucky to be alive.

I didn’t really know it at the time, but packing it all in like that was also a pretty handy avoidance strategy. The relentless pursuit of fun and happiness, no time or space to think or feel. Humans are hardwired to avoid pain and I made a shining example of one showing how it’s done. 

It wasn’t until my late 30s, happily married with two gorgeous children, living in the idyllic Cotswolds, surrounded by incredible friends that, in kind of oblique ways at first, I started to unravel. Always fine fine fine but with an intolerance to anything but, and always finding ways to rationalise dips, and always always able get myself out of them. I WAS HAPPY,  DAMMIT.  

What I couldn’t quite explain were those occasional ‘appearances’ from my parents in my consciousness – I’d find myself, on a Tuesday afternoon say, whilst putting away pants, suddenly blindsided by a memory from child-me,  seen through the mind’s eye of adult-me, now a mother, and I’d lose my breath. Bouts of the lows got closer together and went on for longer, in retrospect possibly a low-level, high-functioning, humming depression. Bouts of anxiety that I didn’t recognise as anxiety at the time, all the while feeling happy but never feeling enough, and all the while becoming increasingly detached, disappearing into myself as I tried to work it all out. 

At the time, It felt a bit like ambling into a gentle, mild-mannered, early mid life crisis and I tried to solve it in all the predictable ways. Work. Running. Volunteering. Yoga. Projects. Hobbies. Parties. Work. Parties. Eventually, when I got stuck, when I was doing all these things and didn’t have the answers any more, when there was nothing to do but hide in the study and cry, without any understanding of what I was crying about, my little girls, then so little, on the other side of the door, I sought out therapy. 

A random chat with someone at a party eventually got me to the right kind. She mentioned Psychodynamic therapy – a talking therapy where you look to the past to understand your present. A penny clanged loudly somewhere over there. Ah. Yes. That. The past. Maybe I should go there.

Fast forward to Breast Cancer. The most shocking thing about the diagnosis when it came wasn’t the cancer – it was that I felt I had predicted my own death. 

The diagnosis came at the tail end of a year of weekly therapy sessions where I had divulged something to my therapist, something I’d never told anyone and wasn’t sure I’d even actually thought it out loud before,  It was more of a feeling, a feeling that I might not have been able to find and grasp in my hands were it not for the ferreting around that comes with psychoanalysis, the kind of thing that you trip over, incidentally, as is often the way with therapy, the feeling that I was going to die young. 

Talking about it meant I was able to untangle the impact, chiefly, a growing detachment from my daughters and my husband – I was pulling away, protecting them, and me, from loving too deeply by way of preparation for my inevitable death. I had even, during really dark times, thought of leaving. It would be easier on everyone that way. 

It turns out that my experience, this feeling, is extremely common among adults who lost their parents as children, particularly as you approach the age they were when they died. My mother was 46 when she was switched off very suddenly by a subarachnoid brain haemorrhage. I was 41 when I started therapy. By degrees, I was able to to accept that this feeling was a function of my past. The invention of the grief-addled inner child, the same one that, before her mother died had wondered what it would be like if Mum died, had even played it out in her mind, and for many years after, lived with the feeling that she’d killed her mother by thinking it first. Shit. I don’t think I’ve even told my therapist that bit.

When it came to finding the not-a-lump in my breast (because it wasn’t a lump, but an ‘innocuous’ thickening of breast tissue, even my husband couldn’t feel the importance), there was a fair degree of wrestling with myself before I went to the GP. For a time, I convinced myself that what I was feeling was a physical manifestation of what was in my head. That wasn’t a 47mm tumour, it was paranoia. That already quietly invasive carcinoma was my dead mother. 

As the cancer reality unfolded, as the meetings progressed and the diagnosis became clearer, the idea that this was the beginning of the death I had apparently predicted, felt so absurd, absurdly cruel in fact,  that I readily dismissed it. Instead, it became a dark coincidence of such magnitude that it deserved to be laughed at. “I spent a year in therapy persuading myself I wasn’t going to die, then got diagnosed with cancer”.  Ha! Like, I mean, seriously? Apart from anything else, I was truly determined to live. My mind diverted its attention to treatment and survival, and I rode that wave with gusto and positivity, which is exactly how the world wants you to face cancer.

But there was a corresponding idea that came with my diagnosis, an idea that swam up in my own mind early on which I, again, kicked into the long grass, but one I could also see in the eyes of those who knew about my past and that traumatic first year of therapy, the year where it roared out.  It hung in the silence on the phone when I told them. That I had given myself cancer by being broken. Thirty years of deeply buried grief, had poured into my breast and made a tumour. This cancer was the ‘error of my feelings’. 

A cancer diagnosis outs the ‘truths’ people hold. Random cellular mutation isn’t enough. In the absence of a satisfactory explanation, humans feel compelled to fill in the gaps, particularly if you don’t look like a walking risk factor.  “Her cancer was caused by stress”, a friend said of her Aunt, and “cancer is caused by childhood trauma” said another, as I tried to hold my face still, wondering whether I should ask her to elaborate, very specifically, ideally with some science, on how my dead parents gave their future daughter cancer.  Tragic.

Now nearly seven months since diagnosis, first-phase of active treatment behind me, that early gusto and positivity that carried me through has evaporated and I am settling into that ‘new normal’ that is often spoken of, a new normal that accepts fear of a return as par for the course, a  normal where the ‘gift’ of that brush with death hangs heavy in the hand.

These are the things we all deal with. But we all also have our own personal narratives to untangle. How you deal with cancer, what it throws up in your mind, is bound up in what came before it. And the mind can be a terrible thing, especially at night. 

For me, it’s about rebuilding trust in myself whilst simultaneously fighting off the inevitability demons. When things are really bad, mine comes in the form of a near-comedy Grim Reaper telling me that this is written. My death was foretold. And if not, I made it happen by subconsciously feeling its possibility. But it’s the fear that grabs at you in daylight hours that’s in many ways, worse. Like the Dementors in Harry Potter, those dark hooded creatures that feed on human happiness, the fear drains you of joy and hope.

I know what needs to be done. I need to conjure my own version of the Patronus Charm to ward off the Dementors and re-write that narrative that gnaws at me in dark corners of daylight hours. Even if I die of this cancer, I refuse to let that be my story. I don’t have the answers as to how to do this yet (apparently the Patronus Charm is particularly hard to master), but I do know that it is daily work and that writing about it is part of it.

Occasionally standing in an empty field and roaring “FUUUUUCK OOOOOOOFF” at the top of my lungs is also very helpful.

Conversations with Oncy

OK, here’s a bit to explain those mystery scans I had last week. A few of you have been in touch on instagram and email. I know I’ve been quiet on all this but I just didn’t want to create any unnecessary DRRAMMMA >Jazz hands< and I’ve been doing a fine old job of sticking my head in the sand on this one. In truth I realise it’s also because I’m scared, and when I’m scared I hole up. If I write here though, it kind of takes the edge off. Here’s the skinny, in the form of conversations with Oncy.

February: The Diagnosis Meeting: With the Breast Surgeon “Surge”. (Once we’d gone through all necessaries of first stage treatment i.e surgery)

Me: So, when do I have a scan then.

Surge: You don’t need to have a scan

Me: But… how do we know it isn’t anywhere else..?

Surg: You don’t have any symptoms.

Me: But I didn’t really have any symptoms of the breast cancer

Surge: You had a lump.

Me: Yes but.. It wasn’t very obvious.. What if it’s somewhere else.

Surge: Then you will have symptoms…

June: The No-Chemo-Straight-to-Hormone-Therapy Meeting with Medical Oncy, the badass one (Once she’d explained everything to do with long-term hormone treatment)

Tom: So how do we monitor things going forward?

Oncy: Well, I will see Siobhann in a few months to see how she’s tolerating the hormone drugs

Tom: No I mean, to see if the treatment’s working. Scans or blood tests…

Me: Babes, there are no scans. We just live in mortal fear of a return and then if silent cancer gets big enough, we’ll know about it in symptoms and then it’s incurable (ironic game face grin)

Oncy: Yes. Pretty much. 

Tom: ….

September: The Post-Radiotherapy Meeting with the Clinical Oncologist(Once she’d examined my radiotherapy site. Ie. boobs, babes. Also… after long conversation involving me bursting into tears and blubbing over my extreme lows-and-lows, pouring out my worries in liquid form about hormone therapy ruining my ‘cancer free’ physical life and ‘can I keep running?’ because if I run, won’t it grind the bits between my joints to a pulp and will my bones break mid triathalon? What is this unholy life-saving hell anyway? Things like that.)

Me: I’m worried it’s quietly spreading. I lay awake at night convinced I am going to die. Every niggle in my shoulder or my back. By day, it’s better, but I am worried. I know the Letrozole can cause bone pain but still. The anxiety is awful.  I think just a base line scan to know that everything is OK would help.

Oncy: Are you usually an anxious person…?

Me: Thinking, Fuck.. she’s watched Suits for sure. Well… I mean… a bit I guess.. But I manage it pretty well….

Oncy: The thing is, if there’s no reason to think you do need a scan, then it’s likely a scan will create more anxiety. They do that. Scanxiety is a very real thing. Also, data shows that monitoring scans of those with early cancer do not actually improve survival rates. It might catch the cancer a month or two sooner, but the outcome would be the same…

Me:… because if a growth is big enough to be found on scan, then it’s big enough to give you symptoms..?

Her: Exactly. It’s also not good to expose you to unnecessary radiation. However, I am prepared to discuss this with the team to give you one scan.

Me: Actually, don’t worry about it. You’ve really reassured me. I really don’t need the extra anxiety. So, I can take on some kind of big physical challenge like a Tri or a big long run?

Oncy: Yes, you can. I am actively encouraging you to.

Me: Can I have a hug please?

Oncy. Yes you can. And you’re doing great. 

We hug. 

Me, some time later, triumphant, at home: “Babes, I told her I didn’t want the scan after all!”

Tom: WHAT?!

It was stupid really. I didn’t really talk to her much about the back pain. I thought it was just my muscles. It’s probably just my muscles. I think I wanted to prove that I wasn’t just an anxiety-addled mess.

OCTOBER: After much thought.

I cave. I go back and request a scan via email. I explain that I’ve been to the physio a couple of times, and I do know some it’s muscular and to do with my tight fascia,  but other pain has entered the fray. Is it my spine? My ribs at the back? Honestly, I could almost just think myself a new cancer at this rate. I just don’t know my arse from my elbow anymore.

I’ve had the scans now. A bone MRI and a CT scan of my torso (TORSO TORSO TORSO) and am awaiting results. Where’s my head with it? Honestly, I don’t know. There are days when, in the real pit of my stomach, I feel that it’s fine. That it’s nothing. I am trying to listen to that voice. I am generally going about my business thinking that it’s nothing because that’s a much easier thought to think. And then I remember that I thought that about my boob, and that turned out to be a big something. And I question the pit of my stomach.

My radar is well and truly shot to pieces. The only way of knowing for shizzle is to get those results.

Why am I only telling you all this now, after all this time? Because, if it’s nothing, then at least, if you’re a friend without cancer, I guess you get that window in. If you have cancer, you will no doubt be nodding along and thinking, “I hear you babes”. If it’s nothing, and the scan results come in, I can tell you, and it will make sense because you’ll have the back story and we can celebrate with GIFs on instragram. Hurrah! I Am Not Incurable! Boom emoji. Party emoji. High Five emoji.

And if it is something, then you will know that that my ‘new normal’ just dramatically imploded, that we’re dealing with a whole new-level bucket of shite, and that I might need you. Again.

Eek emoji.


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.

HOW’S YOUR FUZZ?

No really, how IS your fuzz people? You got loose fuzz or you got tight fuzz? Tight fuzz ‘aint so good. I know it sounds like it should be good but it isn’t. Turns out you need loose fuzz. You wanna be able to, in theory at least, run a finger through that fuzz and for it to just sliiiiiide on through nice and easy. Here’s the deal;

So, what the fuzz is the fuzz? The fuzz is part of your fascia which is a membranous layer of connective tissue under your skin that envelopes your organs and muscles so that things can kinda’ slide off each other, not get all stuck together. Best thing is to watch this awesome awesome video below (literally, in my top 10 all time of youtube videos. Up there with Laughing Baby, Sneezing Baby Panda and anything that comes up under ‘bot fly removal’) but before I do, I will answer the question I can hear you asking right now – WHY THE FUZZ ARE TELLING US THIS SHIV?

Well, after really struggling with what I thought was a MAHOOSIVE knot in my right shoulder, which lead to pain creeping down my back and then eventually up to my neck (and me at night, every night, thinking, it’s metastatic cancer in my booooooones), I went to the physio. Turns out my fascia got stuck and this is really common with people who’ve had breast surgery.

In fact, if you’ve had any kind of surgery, or have had a period where you’re less mobile, where you are not moving in the same way you usually do, where you might be holding yourself differently to unconsciously protect an area, you can get fuzz build up and tight fascia.

So yes, I got the fuzz build up, I got the tight fascia. And it all links to that mastectomy diep-flap reconstruction surgery I had back in March, and the radiotherapy I had in July. I have been pretty active throughout – I even had a deep tissue massive four weeks post surgery – and started back on very gentle running and yoga six weeks post surgery – and I STILL got the fuzz.

And let me tell you this. Getting your tight fascia sorted is it’s own level of really not fun. There I was, trotting off to the physio fully expecting a a bit of delicious elbow action right there in the bit, you know the bit, the oh-yes-right-there-bit, eyes rolled back as you disappear into that tiny crack between agony and ecstasy, but no. It’s like having a chinese burn on your back and you will spend the entire time mentally ferreting around trying to find the pain-pleasure crack, and come up disappointed.

So, my lovelies, watch this video and go forth and conquer the fuzz, every day. Biiiiiig stretches now. And hold this gem of a human in your mind when you do so. He’s just ace. Oh, and, a first for me – inadvertently getting ‘cadaver’ into two blog posts in seven days. Boom.

Laters,

Sx

I love sciencey-people. I love this man. I’m now following him on Facebook. Yes really.

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?

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.

Chemo has been cancelled. WTAF?!

In the weirdest turn of events since events got weird, three days before having my PICC line put in and four days before starting chemo, having gone through the long arc of disbelief, rage and acceptance on having chemo INCLUDING CUTTING MY HAIR (yes, we can laugh, Honestly. This IS the cancer comedy after all) I’ve just been told I’m not having chemo (laughs maniacally).

“What the actual fuck?!” you metaphorically scream with your metaphorical head in your metaphorical, or perhaps even actual, hands ( I know you’re doing it , because that’s what I did). The short answer is it’s to do with the Clinical Trial I hadn’t bothered to mention, stuff I’d spared you all because… well, it’s detail you didn’t need to know, and we, including my cancer team, thought it all pointed in one big chemical direction. So here’s the long-ish answer

Cancer Maths.

Cancer treatment involves quite a bit of cancer maths. With primary breast cancer, treatment involves dealing with what’s IN YOU at that given moment, and then you’re looking at reducing the risk of of localised recurrence or metastases (secondaries). The data looks at 10-15 year return rates. Cancer maths at the medical end of the spectrum focuses on probability garnered from clinical trials and studies. It’s all data driven.

Cancer Blind Spots

I’ve mentioned that there are different grades of breast cancer but also cancers with different receptors which can determine treatment. For example, for a hormone receptive cancer, a cancer that grows with hormones, the treatment is hormone therapy. For high grade, fast growing tumours, chemo is really effective because it’s brilliant at hitting cells that sub-divide quickly. My particular type of Breast Cancer (low grade, hormone positive, HER2 negative) tends to get treated with hormone therapy AS WELL as  chemo, just for a belts and braces approach and in the absence of more more information about the genetic make up of the cancer and what it might do. Blind spots. That means, lots of women go through chemo even though it might not have a direct impact on reducing long term recurrence. Yah. Painful. Traumatic. Also, expensive.

The Future.

A t the cutting edge of diagnostics however, is personalised diagnostics and treatment based on the genetic make up of the particular tumour. Many diagnostic tools are already in place and the one that currently isn’t widely available on the NHS is Prosigna . This tool provides highly accurate and personalised predictions based on the genetic make up of the tumour.

A few weeks ago, I consented to have my data used in the Optima Trial which is gathering data to predict who might benefit from chemo. It was a randomised, double blind trial with 77% of people going straight to chemo and the rest being tested with Prosigna . The Prosigna tool tests the tumours, categorizes them further based on the gene assay. The tool helps determine who would most benefit from Chemo, based on robust data. Some of those tested would be referred for chemotherapy. Those who they predict wouldn’t benefit based on the analysis, would go to straight to hormone therapy.

Back to me..

It turns out I was randomised into the Prosigna arm of the trial and, upon further testing, it was decided that my best treatment plan involved going straight to hormone therapy. Meaning, chemotherapy was highly unlikely to have any benefit on the long term prevention of recurrance.

For me, having chemo is like using a blind bazooka to kill a really mean fuckin’ ant. And missing because the ant is under a rock somewhere over there, meanwhile obliterating everything in its wake, all the while hoping some shrapnel might hit said ant. In my case, long term hormone therapy, along with a good blast of targeted radiotherapy, is much more likely to prevent a recurrence.

Now, way back when, this exact outcome was determined to be extremely unlikely. Vanishingly remote. Even if I was randomised into Optima, there were characteristics of my cancer (chunky tumour, node positive, extra-capsular) that led the team to believe that I’d go straight to chemotherapy and that this was the best thing to do for me regardless. To de-risk the situation as much as possible. And so the course was set for chemo. Letters were received, a chemo schedule put in place. Holidays were cancelled. Hair was cut. I published several blogs to help me come to grips with it all. We cried, we processed, we dealt, we accepted. We braced ourselves. 

And so, here we are…

Needless to say, we are overjoyed but what I will also say is that we are kind of emotionally fried. I am writing this on the day we had the meeting with Oncy so the feelings are fresh and vibrating. We’ve been through the whole, “is it an admin error?”. Tom says it feels like we’ve just had a stay of execution.

Suddenly, our daughters don’t need to experience their mother going through chemo. I don’t have to watch my daughters and my husband watch me going through chemo. In one fell swoop, it’s all different.

I for one feel an overwhelming desire to stare at a blank wall until it sinks in. 


ChooChoo Cancer Train: Next Stop CHEMO

OK, so last week I basically shat my pants because I found out I was going to have hard-core chemo which makes me lose my hair. But then I cried, raged, watched Episode 5 of Fleabag S2 over and over in the dark in the downstairs loo on my own, wrote about it, put fresh pants on, and now I’m over it.

That, I hasten to add, all happened in about 48 hours. The appt with Oncy (sounds cute doesn’t she?) was on Friday. By Monday I was on instagram wearing a blue wig and image searching comedy interim chemo cuts. The cancer train moves at a terrifying pace and there ‘aint much time to wallow –  I’ve got a hair plan in place, and am now looking ahead at the practicals. Like doing school holidays with two young kids. And Chemo.

She’ll be right, as they say in the home-country.

Back to the practicals. Look – I’m actually publishing helpful details for my friends and family instead of unleashing all my inner most feelings on the public!

Chemotherapy runs in cycles. I am doing six cycles, three weeks apart.

CYCLE 1: 18th May

CYCLE 2: 8th June

CYCLE 3. 29th June

CYCLE 4. 22nd July

CYCLE 5. 12th August

CYCLE 6. 2nd September.

Poison goes in on the first day of the cycle, body shits itself, body flushes poison, then just at the point you’re starting to feel better, more poison goes in. Oh the joys! But it’s blitzing the cancer so we must remember – it’s GOOD poison. Like the best damn Vodka Martini you ever tasted,  (but at the point when you realise that the first one might well have ‘taken the edge off’, but the 6th probably isn’t ‘medicinal’ anymore and you can already feel tomorrow’s HORRIFIC hangover setting in).

I don’t really know how my body will respond but modern chemo is a lot better than it used to be and there are loads of meds now to counteract the horrors. Feeling sick? They’ve got a pill for that! Uncontrollable diarrhoea? They’ve got a pill for that! Nails falling off? Oh, soz, just gotta suck that one up actually.

The reality for most with cancer, and me going forward, is that life goes on with chemotherapy.

Hubby will take some time off around the bits we anticipate to be the worst. We will get away for the odd weekend. People will rally. Ahead is a slow, gentle summer living life, doing cancer on the side, and me sharing every revolting detail of my chemo’d inner machinations on instragram.

Stay tuned people. There will be photos.

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}

THE top reason to have a DIEP flap tissue reconstruction

Last week I wrote about my mastectomy reconstruction surgery. I had a DIEP Flap reconstruction which basically means my tummy was used to re-make my boob following a mastectomy. There are lots of reasons why I chose to have that kind of surgery (go to the Q&A bit), but hands down, the best reason to have one is because it’s got the word FLAP in it.

Day 1. I’m in my room, shortly following surgery having just been moved here from recovery. The nurse comes in to examine my newly reconstructed breast.

Nurse, gently stroking the new bit with the back of her finger: “It’s lovely and soft and warm”. Me, thinking, ooookaaaaaayyy; “Thank you. I bet you say that to all the girls”.

Sometime later, and I mean quite some time later,  following several of the breast doppler checks which take place every 30 minutes for the first 24 hours post surgery to listen to blood flow, the penny drops. With a loud CLANG with cartoonish reverberations. The finger stroke is one of the post-surgery physical checks to assess blood flow to the area.  Mortified.

I hope they blame the morphine. I cheer up with every breast examination thereafter but keep my thoughts to myself for fear of being cast the Cancer Creep in Room 17.

“OK, let’s check your flap then”. (Okey dokey let’s do that!)

“Your flap is lovely and warm”. (Isn’t it though?)

“That’s a really good looking flap”. (No one’s ever told me that. Thanks)

“Do you mind if I look at your flap now” (If you must, Doctor)

And once more, this time, nice and breathy “It’s lovely and soft and warm”

Why thank you.


My Flap Reconstruction. God I love this stuff.

No, I haven’t had my FLAP reconstructed (snort), I’ve had a flap reconstruction. The medical term for the whole operation is a mastectomy diep flap reconstruction. For the car-crash rubberneckers, the surgery curious, the people who slow-mo the worst zombie scenes in The Walking Dead just to relive the horror again and again (me too), this is for you. Oh, and family and friends who haven’t yet had the privileged experience of me walking you through my surgery deets, blow by blow. I lay it all out on a plate for you right here, just like my mastectomy specimen before it was sent off to pathology.

If you’re a bit on the squeamish side, this one’s probably not for you, especially if you have a belly button phobia (people do, you know).

I am just going to begin with the top-line, the nut shell summary, if you will. I’ve had the nipple (and a bit of extra skin) and all the internal breast tissue, including the cancerous tumour, removed keeping most of my breast skin. That’s the mastectomy bit. The volume of my breast, and the skin that needs to be replaced to cover the hole where the nipple used to be, comes from fat and skin from my abdomen. That’s the reconstruction bit. To ensure this skin and tissue survives in its new home, it goes with its own blood supply.

Here’s a diagram of the procedure, drawn by my surgeon.

Nicky’s hand writing is better than Jane’s.

The first thing to explain is that, unless you choose to delay the reconstruction ’til later,  the mastectomy and the reconstruction happen in the same operation. One team, different surgical specialties coming together around the operating table. Mrs Adwani, my Consultant Breast Surgeon performing the mastectomy, and Miss Petrie (Nicky), Consultant Plastic Surgeon performing the reconstruction. And the rest! Registrars, med students etc etc.

Here’s a pic of everyone in action on the day of surgery.

The thing that preoccupies me most about this photo is wondering
WHICH ONE SHAVED MY LADY GARDEN?

In our pre-op meetings and physical examinations, Nicky has ascertained that she can make up the volume of my breast from my abdomen. This is by a simple process of grabbing, pulling, pinch-tests and measuring. She was trying to make a hand full which is pretty much what I have.  She checked my back, and my inner thighs (nope. Pleasing). She also works out where the incisions are going to take place and what happens with my belly button. I’ll come back to this later.

Her job, on the day of surgery, is to locate a specific mass of tissue, as fat or muscle or both, that has a good blood vessel running through it.. The decision is made once she goes in and sees what she sees and finds what she finds. She does however go in with some knowledge, gleaned from a blood vessel MRI scan that took place before hand.

I am going to explain this in steps, but actually quite a lot is going on simultaneously with different teams working at different ends of my torso. (Torso. Eugh, Weird. Sorry).

On the day, shortly before the surgery, Nicky does a drawing on my body to map out where they are going to cut. Now, funnily enough, the girls were around for this part. She didn’t blink an eye as she sailed from meeting the children, to “would you like to see what I am going to do?” all delivered with warm eyes and a completely reassuring tone as she “drew pictures on Mummy”. The girls were riveted.

As I have an a-sexual PLANK of a body, and this is a surgery post, this doesn’t count as weird internet nudity, OK people? What you can see are the markings my surgeon makes before surgery. I am then cleaned up (with Boots antibacterial wipes maybe?) and re-drawn up later. p.s. the surgeon didn’t draw the eyes on righty. One of my daughters did, the night before.
That’s Another story…

OK, now to the operating table. Step 1 is the Mastectomy. A 5cm hole around my nipple is cut, and a bit of extra skin in my case, is removed. All the breast tissue is removed through that 5cm hole, I imagined, with tablespoon, but it probably isn’t. It seems physically impossible to get all the boob tissue through the hole but it does because skin stretches (Vom face. Sorry)

The breast tissue is weighed so Nicky knows what volume she needs to replace.  In my case, the ‘mastectomy specimen’ weighed 222g.

Now onto the next bit.  

If you look at the diagram below, you can see where the incision lines are. Nicky found a layer of usable fat and didn’t need the muscle. She described it as fish-shaped. Long and flat and thin, that ran across the surface of my belly. Like a “fillet of red snapper”, she clarified, when I asked specifically, “which kind of fish?”, with some extra fat coming from the two bits either side of my belly button, as shown.

That elliptical fish shape, the flap, but let’s stick with fish, is effectively what was taken out, hip to hip.

Importantly she found “a loooovely big blood vessel” (me, smiling, like I just won something) running through it. She removes the fillet, and the blood vessel, cauterising and sealing off blood vessels in my abdomen as she goes.

There is some pretty serious microsurgery going on at this stage. The surgeons do everything using a powerful microscope, peering down through it, with their hands doing the work underneath.

See big microscope thing. It’s the tools that get me. “Scissors” >holds hand out<.

My fillet of red Snapper (can’t say flap) is then literally walked across the room in cupped hands to the scales to be weighed to double check comparable volume, and then the breast reconstruction begins.

Now, this is where Nicky is ‘the bomb’ and has a reputation for creating the right shaped boobs. I asked, “how do you take a long flat thing and make a rounded plump thing?”.

Once in, she takes the fillet and suspends it with small stitches to the top corners (see diagram up there, marked ‘stitches’). Eventually, the stitches will dissolve and a natural adherence will develop with my own tissue. Tummy morphs to boob. There’s enough thickness in the fillet there to create the downward sloping ‘padding’ for my breast to reflect its natural shape, but she also does some shaping. To get the curvature for ‘side boob’, she effectively curls the ends of the fillet and tucks it under. I mean, wouldn’t you?

The big juicy blood vessel she found (I am so amazing) is then plumbed into the internal mammary artery and vein. To get to it, a small section of rib cartilage is removed.

Again, more microsurgery. The blood vessels we are talking about here are about 2mm in diameter. Nicky is literally using tiny tiny stitches to stitch two blood vessels together. Here’s an image of that looooovely blood vessel up on screen, clamped and in the process of being stitched.

Stitching the blood vessel. Isn’t she JUST gorgeous? Each square on the
background represents 1mm.

Right, back to my flap (snort). The skin of my abdomen, of our snapper fillet, then partly becomes the skin of my breast, replacing what was removed during the mastectomy, and is stitched in place. This also becomes  the foundation of my new nipple, which will be reconstructed at a later date. And so my tummy skin, is now my breast skin.

I am so grateful I don’t have a hairy tummy.

OK. Now to the belly button piece. Now, if you look at the diagram below, the top line of the elliptical fish fillet needs to meet the bottom line (Left)

Consider that if the surgeon takes the skin from the top and stretches it down, my belly button is going to be dragged down and therefore potentially in the wrong location in my torso (TORSO TORSO TORSO. Sorry, just desensitising that one). Consider, too, that one’s navel is in fact attached to you on a sort of fat stalk from the inside and it can’t stretch very far. SO, the surgeons need to cut around my belly button to release it, drag the skin down to meet the bottom line, stitch up the base line, which traverses my pelvis, PLUS stitch up the old tummy button hole (image right)

Then, a new hole is cut further up where my tummy button ought to be, and my belly button popped through that and stitched up. My tummy button hasn’t been relocated, but the skin around it has.

And that, my friends, is the full story on my surgery – tummy tuck and boob job in a oner. Not forgetting we just got rid of that fucking tumour which is why this is all happening in the first place.

Any questions? I thought you might. If I haven’t covered them below then feel free to ask me in the comments (btw, after you’ve commented once, the system remembers you and you don’t need to add your details in again).

FAQs

How long did the operation take?

About nine hours. I arrived at the hospital at 7am. I was under by 8.30am and the op started at about 10.30am and finished at around 7.30pm.

I too, am wondering about those two unaccounted hours.

Bloody hell, that’s a long time! Did they stop for lunch?

Yes. But briefly. Nicky had a grapefruit. I think she’s on the Grapefruit Diet but I didn’t ask.

Dan, the Registrar, had some kind of bean stew and ate in in about 3 minutes. Punchy choice for a small room and a lot of people, I thought. Especially not mindfully chewing for easy digestion (I actually thought all these things).

Basically, as far as I can gather, these surgeon types are super humans and work the whole way through, stopping only briefly to eat on the fly and go to the loo. The med students are probably napping on the floor.

Why did you have to lose your nipple?

Too risky. The cancer originated in the milk duct which is linked to the nipple. It’s the same reason the surgeons decided to take some extra skin as it felt like the tumour was quite close to the skin.

Did you get a gander at the tumour?

No. Although I did ask. The entire mastectomy specimen is sent off to pathology in tact for further examination.

Who took the photos?

A med student who attended surgery took them. I keep wondering if they got the med student to shave my lady garden too. It’s what I would do to an intern, just for shits and giggles.

Do you have MORE photos? Like really gory ones?

More were taken, and yes, I have seen all the key stages of the entire procedure. Nicky went through them with me. I decided not to keep them owing to what I anticipate to be the next global crisis. Cloud storage. We can’t keep everything people.

What about boob after care?

My flap was checked every 30 mins for the first 24 hours, decreasing to every hour for the next 24hrs and then every two hours etc. They are specifically checking blood flow to the breast to make sure that all the pipe-work is connected up properly. They check with a mini doppler, much like the midwives use to check the baby’s heart beat during pregnancy.

What’s the recovery time?

Six weeks off driving and running. About three months all in from surgery back to full recovery.

That’s a big op and big recovery time for someone who works, has two small children, a dog, and leads an active life-style. Why put yourself through it?

It’s really because of all those things. An implant, although a much simpler operation and much shorter recovery time, would require on-going maintenance and eventually more surgery as they do have a ‘use-by date’ of sorts.

Also, a tissue reconstruction gives a more natural result and is much easier to match up to the other breast. Lastly, it will also age naturally in line with my other boob so I don’t end up with ‘Little Miss Perky’ on the left and ‘Little Miss Droopy’ on the right in years to come.

I could have course had lefty clean off and stayed flat, which I did strongly consider and it was initially what I wanted to do. I do however run, swim and do yoga a lot and I just thought dealing with funny bras and chicken fillets and god knows what else would be a pain in the arse and a painful reminder of what I’d lost (imagining a chicken fillet half way down my wetsuit during a triathlon)

I just wanted to have one operation and be done with it forever. No maintenance, no faffing, no thinking about horrible cancer and the impact it’s had.

So, how are things now?

As I type, it’s one week three days since surgery. Boob is going great guns. Apart from the fact that it looks like it’s been involved in its very own car crash (bruising and swelling), there is no pain in the breast area and all as it should be. I am thrilled with the results and most importantly, glad the tumour is a goner.

My abdomen is really tight, I can’t stand straight and this where I tend to feel any pain. There’s a helluva lot of healing going on, inside and out, and it’s pretty tiring all told. I can’t stand for long periods or walk far. Progress is, quite literally, baby steps.

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.

I’m down. But it’s good.

As I write, it’s Saturday morning. I am still in recovery in the hospital following my mastectomy-reconstruction surgery and I’m feeling rotten.  This is good. It’s a helluva lot more normal than what I have been feeling. It feels like the beginning of feeling more human.

I’ve been UP since diagnosis. A really weird high completely at odds with the news we’d been given, but precipitated by the sheer relief that it wasn’t terminal.  That’s where the mind goes when you’re waiting for results. It just flits there momentarily, from time to time, against your will, and you don’t realise the impact it’s having until you are delivered news that’s better than absolutely terrible. You collapse with relief, as if your bones have just dissolved, on the floor, all skin on cool linoleum.  And then boom, you’re up, as if inflated suddenly with happy helium. This is amazing! I’m not going to die! I’ve dodged a bullet! The children WILL grow up with their mother! It put me in nothing other than a bloody good mood which carried me through the really tough bits. Like telling my two little girls, and then my siblings. But still, it didn’t feel natural.

After that, I stayed high. There was a process to focus on, of course (“I’m going to project manage the arse off cancer!”) . Appointments. Scans. Decisions. But there was a bit of a gear change. It shifted to more like being on high alert. My blood was fizzing. I guess it’s what you’d call anxiety but it was different. My friend Sukey said, “is it like when you run your finger round the rim of a glass and you get that high note?”. It’s exactly that. That vibration and that tone, coursing through your veins and your mind 24/7. I hummed. But I wasn’t sad. I wasn’t low. I wasn’t angry. I was on a mission. And I slept well.

Then came the operation. Eyes down. Eyes up. Cancer out. Oh my god, the elation I felt coming out of surgery was indescribable. I felt euphoric. I woke chatting and smiling and was surrounded by my super-duper life-saving team who all happened to be good looking with a great sense of humour! “Hi you lovely peeeople!!!!”. Pure, unadulterated joy. I’ve since learned that that is the combined effect of anaesthesia and morphine. An accidental side effect, but quite convenient as it turns out. Drugs are fab aren’t they?!

Even 24 hours later I was riding on it.

Consultant/doctor/nurse/physio; “So, how are we today?”

Me: “EXCELLENT. I’ve done a poo!” (smiles broadly, waits for praise)

Like a toddler, I dined out on my poo for a good two days, eking mileage out of it with each subsequent success.

Consultant/doctor/nurse/physio; “So, how are we today?”

Me: “EXCELLENT. I’ve done ANOTHER poo…” (smiles broadly, waits for praise)

My surgeon told Tom on the quiet that day three after surgery is usually when it hits. That would have been Friday.

The poo was pretty old news by Friday, but by then lots of other key milestones had drip-fed me little lifts. The catheter came out (momentarily disappointing actually. “You mean I have to actually get up?” I was quite enjoying kicking back in bed and not bothering to get up to wee ). The IV pain blocker to my boob and the cannula came out and I was two more leads down. I ticked the ‘can do stairs’ box which means the physio was able to sign me off to go home this Sunday. That means it’s just me and my drains now and I am mobile. On top of all that my op has been successful. My boob is doing just great.

So. Back to today. My chest is heavy with emotion. I feel sliced up, stitched, and stapled together. Everything is either swollen, black and blue, or really tight. I can’t stand straight. The enormity of it all crept into my room in the the middle of the night and gave me a big slap around the chops. The low has hit me. Finally, I’ve sobbed.

It started around 3am. Out of nowhere. I called Shirley, the nurse who has done nights three days running, to help me to the loo. I can get there myself but it’s a major palaver in the middle of the night. I shuffle to the loo. It’s on the return shuffle that the flood gates open. I am not sure how old Shirley is but according to my surgeon “she’s an institution” at this hospital. She’s like an Indian Granny. She knows the drill. She simply guides me to my bed tucks me in and tells me everything will be OK.

When I open my eyes in the morning, I am slammed down again by the heaviness. I know it needs to happen. What goes up, must come down. I am glad to be here feeling normal feelings, feelings that are closer to my reality.

What I was feeling before is real, but I was also aware, even as it was happening, that it was a sort of ‘fight or flight’ reaction.  Basic instinct takes over and you go into survival mode and that’s a pretty exhausting state of mind to maintain. I got out of bed this morning and re-started the job of being a human, albeit on a different channel. I washed my face. I brushed my teeth. I decided not to go back to bed but sat on this green chair instead, looked out of the window and wrote all this down in the lovely book that my friend Lou sent me. It just helps writing about everything.

It also really helps that the book has lines in it. Thanks Lou.

Everybody up for a standing ovation!

It was around midnight Wednesday. There was definitely a rumble of sorts. It feels like the troops are mobilising. Oh my god. There’s no mistaking it.

I need to poo.

I haven’t ‘been’ since Monday. We came in early Tuesday for ‘op day’  and i drank coffee on the way in to help, well, ‘move things along’. I thought it would be optimal to go into theatre ‘empty’.

We meet Jane, my wonderful anaesthetist. She goes through a few things.

“Any questions?”, she asks.

“Well.. there is one thing.  I haven’t done my morning ‘constitutional” I say with meaningful eyes.

“I won’t… you know… On the… during the…??”

“Oh no don’t worry, everything will grind to a halt”

“Like when you go camping?”, I suggest.

“Exactly” says Jane, parting with “right then, see you later and erm, good luck with your wee slash poo situation”.

No more to report.

Back to midnight last night. I am now post-op so let me put this in perspective for you. I’m lying in a hospital bed. I have two drain pipes attached to my insides on the left hand side of my body (one for my breast, one for my left abdomen) with accompanying bottles for post-op body fluid to drain into, one drain on the other for right abdomen. Also a catheter and accompanying ‘wee bag’. Intravenous pain blocker direct to my newly constructed breast on the left, and a cannula /morphine feed, the latter two attached to a lamp-post-machine thingy on wheels to the right of my bed.

All this needs to come with me.

I call for the nurse. She arrives,  takes one look at the situation, and calls for another nurse.

We all exchange a look that says, “ok. Let’s do this”..

We start with what we need to do to get me out of bed. I have intermittent pneumatic compression devices velcroed around my legs (to prevent blood clots) which need to be removed. My bed clothes include the ‘Bear Hug’ an inflatable plastic blanket with warm air being pumped through it 24/7, sheets and blankets. I am physically ‘plumbed in’ to everything so, as the bed clothes etc come off, we need to give clearance to the wires on both sides of the bed as I ever so slowly bum-shuffle down, taking some weight into my right arm, and get myself to sitting position on the edge of the bed.

The intravenous lead from my right arm to the not-a-lamp-post on wheels is short so it needs to be wheeled from the right hand side of the bed to the left, with my arm following it.

Nurse A, let’s call her Romana, because that’s her name, brings a drain bottle and my catheter bag. Nurse B, Shirley, is holding the other two drain bottles. In the end we decide all the drain bottles can go in a ‘Chipping Norton Literary Festival’ tote bag to make it easier to carry them.

The door to the loo is two metres away as the crow flies. I inhale, and stand on the exhale. This is big people.

I have effectively had a tummy tuck to create the volume for my left breast from my abdomen. It’s really tight down there and I can’t stand straight. It’s a slow, decrepit, old-lady-like shuffle to the loo. I’m wearing a backless hospital gown which is the only remotely convenient thing about my set up in that moment.

Once I get there, we all need to go in. Because of where the nurses and the wheely thing are in relation to me, we need to walk in , reverse, and de-rotate so I am not entangled in wires and everything is on the correct side. This happens in the small space between the sink and the loo.

Sitting is an effort but a relief. We bloody made it!! It feels massive. But not as massive as what’s backed up inside me and threatening to come out any second. It suddenly feels very crowded. You know that scene in Ghost, when Whoopie Goldberg is in the room with all the ghosts and she does the, “right, EVERYBODY OUT, OUT OUT OUT!!!”. That happens.

Aah, privacy. I close my eyes and wait.

And wait.

Eventually, I fart.

[SOME TIME LATER: I’m pleased to report a ‘happy ending’ to this crushing disappointment. I had aimed for Everest and only reached Basecamp and it was a difficult blow at the time. Tom and the girls came to visit me the following morning. Tom brings coffee and beetroot juice.  A familiar rumbling kicks in toward the end of their stay. I ignore it for a while. By the time I slam that nurse button we are ALL SYSTEMS GO. I make it to Basecamp AND Everest! Thanks for bearing with me as I got my poo story out. The poo is a big step in recovery. It means my insides are back on track. It means, I can get from the bed to the loo. That means they can take the catheter out. That means I am one ‘lead’ down in being plumbed into ‘the system’ and one baby-step closer to getting back home. And THAT my friends, is a worth a standing ovation].

CROWD SURFING THE LOVE WAVE: A SHORT MESSAGE OF THANKS

I am in hospital as I type, recovering from my mastectomy-reconstruction surgery, hooked up like you wouldn’t believe. Three drains. A catheter. A cannula for my morphine (YEAH BABY – given myself a little hit this moment, just because I can. Shimmy shimmy). It sounds scarier than it is, but of one thing I am certain – I rode into hospital on a love wave and all this has been made bearable because of it.

Thank you to everyone for every little thing. I haven’t cried much because of the cancer. An occasional hiccup. A brief burst. Try as I might, I can’t get those tears out (>milks eyes<).  But I have often been brought to my knees by the kindness of you lovely people. Left gasping.

I sleep knowing that Tom and the girls are being carried by our community, near and far. Cards. Meals. Lifts. Playdates. Dog walks. Letters. Hugs. Talks and walks. I have poetry. Playlists. Grazia. Werther’s Originals. Oils. Balms. Eye Masks (genius). But most of all, amazing words;  this is when digital comes into its own (it would totally suck to be diseased in the ’70s). Instagram comments and messages, whatsapp, texts. Messenger. It’s not always easy keeping up with it all but, even if we don’t reply, know this – we inhale them. We drink them in and gulp them down. I don’t understand how it works, but it’s like magic. Osmotic. It lifts us up, and I speak for Tom and the girls here, because they feel it too.

To you all, heartfelt thanks for the love wave. It carries us.

And that’s not the morphine talking.