R is for ‘Recovery’. Part One. 

medicines thermometer

\ ri-ˈkə-və-rē

  1. The process of becoming well again after an illness or injury.
  2. The process of becoming successful or normal again after problems.
  3. The process of getting something back.

Such a small word for such a big concept.  Recovery from cancer is never going to be an easy, straight or simple road.   Neither is recovery from a mastectomy and DIEP reconstruction surgery.  

You last saw me being wheeled onto a ward while wondering if I’d slept with the male nurse who for some reason seemed to want to show me his tattoos (he didn’t and I hadn’t).  And then it all began. In DIEP surgery, the first 24 hours after the operation has finished are crucial as there’s a big risk that the re-plumbed blood vessels, which were moved from the stomach to the breast, will fail.  If they do it can lead to the new tissue in the reshaped breast dying off, starved of vital blood. 1 in 10 of all DIEP patients end up back in surgery within 24 hours of the original operation due to complications with the blood supply.  So for the next day and night everything that can be done to keep my ‘flap’ (the slightly grim word for the moved flesh/skin/veins) alive is done. And that means a pretty damned uncomfortable 24 hours for the patient (i.e. me). Bear in mind that the patient (me again) has spent the last 10 hours (at least) on an operating table so still has a large amount of general anaesthetic swimming through their system, alongside the generous helpings of opioid painkillers (mostly fentanyl, the drug that killed both Prince and Tom Petty) and anti-nausea meds.  They are, to put it mildly, dopey and their only instinct will be to sleep. If that’s ever really possible in those terminally uncomfortable NHS beds and scratchy sheets.  

But several other obstacles are put in the way of the Diep patient getting restorative sleep.  First up, the flap has the best chance of survival if it is kept warm. So please welcome onto the scene the Bair Hugger (sic).  This is basically a large blanket that is continuously pumped full of hot air from a generator attached to the end of your bed. Sounds cosy right?  Like a big warm hug? In reality, on the superheated NHS ward, being pinned under a heated blanket is as close as I’ve ever come to feeling like a chicken in the oven.  Gently basting in your own juices. Lovely, eh? And if sweating like a gross sweating thing wasn’t enough then the generator creating all this heat is as noisy as fuck.  I can see why it’s called a bair/bear hugger. It’s like having the sweaty heft of a grizzly sitting on your chest while it simultaneously and continuously growls right in your face. I felt sorry for the other women on my ward who must have hated me and my bair by the end of day one.  Top tip to anyone about to have DIEP surgery – one of the ‘must have’ items on the packing list is a fan (those hand held USB ones are a life saver).

So obstacle to sleep no 1. Sweaty, growly, grizzly.  Obstacle no. 2 are the leg milkers (not their technical name).  You’ve already been lying down for at least 10 hours and you’re going to spend the next 24 hours or so also flat on your back so a big concern after such major surgery is blood clots.  As well as anti-clotting injections (which hurt like fuck btw, what is it with them? Teeny, tiny needle, big old sting), you’re also fitted with a lovely pair of large inflatable booties that encase your legs up to the knees.  And pump them. Like you’re a cow ripe for the milking. Sequential Compression Devices they’re called. They inflate and deflate continuously, squeezing and releasing your legs to encourage blood flow. They are a good thing. But they’re also jeffing annoying as they alter the pace at which they squeeze/release so there’s never any rhythm you can adapt to, can get in the flow with.  And for me that’s a guarantee that I’m going to stay awake waking for he next squeeze even when pumped full of enough opioids to fell a (pint-sized) pop star.  

Obstacle 3 is the Doppler test.  This is the most vital part of the whole shebang and also the hardest part to ignore.  Anyone who’s ever spent time in a hospital bed will know that the nurses do routine and regular ‘obs’ on their patients throughout the day, usually checking temperature, blood pressure and oxygen levels.  For women who’ve just had the DIEP surgery, these obs are done every 30 minutes along with the Doppler test. The nurse uses a small ultrasound wand to scan the section of the newly formed breast where the blood vessels from the new tissue have been joined to the blood vessels in the chest.  The Doppler bounces high frequency sound waves off circulating red blood cells so that the sound of blood moving through veins and arteries can be heard. As it’s vital that the blood supply to the new breast tissue is strong enough to stop it from dying off, this test has to be done frequently to ensure that the blood is continuously flowing well.  

So every 30 minutes for your first 24 hours on the ward, a lovely, well-meaning nurse has to rouse your grumpy, dozy ass self (who probably hasn’t managed to fall asleep properly anyway) and expose your new boob to the cold air so they can wave a wand over it.  The sound you want to hear is like a heartbeat, just as you hear when having a ultrasound on a pregnant tum. The first time the nurse did the Doppler on me and the beating heart was heard I dopily (and doped-ly) asked her if it was a boy or a girl. I thought that was hilarious.  The nurse not so much.  

So those first 24 hours after the op are a trial.  Your body has been battered about for 10 hours straight, then for 24 hours you are deliberately deprived of sleep by hot air, pumping legs and being scanned like a cheap supermarket ready meal every 30 bloody minutes.  After that things do ease but personally I’ve never felt so ill, drained or just plain toxic than I did for the five days I stayed in hospital. It’s maybe not surprising after such a massive surgery but just how rotten I felt took me by surprise.  Even when my lovely Breast Care Nurse had repeatedly warned me ‘you will feel like you’ve been hit by a bus, then a lorry, then another bus’ and ‘you will think you’ve made the worst decision of your life’. Still in my optimism I had packed my knitting and novels and loaded my iPad with loads of film and TV box sets, imagining I’d be perkily sitting up in bed crafting and binging Netflix.  In reality, the combination of drugs still swilling through my system (now also including mega-strength laxatives as 10 hours under sedation brings everything to a grinding halt) and the restrictions on movement imposed by a catheter and drains (to remove excess fluid from the surgery sites) meant that I didn’t even pick up my phone to check messages or Facebook for the entire time I was in hospital.   And anyone who knows me knows that is a massive indicator of just how shit I was feeling.  Suffice to say I did not manage to knit a hat or catch up on any/all of the Marvel movies I missed. I was lucky enough to have visitors every day I was in hospital which was a welcome distraction but even the loveliness of having family and friends hugs and chat was too much for me after an hour; anymore and I was completely shattered and longing to crawl back into bed.  

Which reminds me.  The first time I got out of bed after the DIEP operation is one of the most excruciatingly painful things I’ve ever endured.  It has to be done of course and the hospital like you to move from the bed to the nearby chair as soon as possible but when the physios came to show me how to move (by rolling onto my side, then using an arm to push upright) I was terrified.  I’d just had my body cut open from hip to hip and the thought of getting up gave me visions of that scene from ‘Alien’ when John Hurt’s chest explodes open in a mass of gunk and alien spawn, except this would be lower down and less alieny. In reality, of course, the chances of me splitting open from hip to hip and flopping backwards like an especially gory Tom & Jerry cartoon was zero, but also in reality the simple roll, push up, sit up movement was so painful I just wanted to vomit all over the physios who were torturing me.  I later found out that a lot of women do indeed faint and/or throw up at this point. Delightful. The first time was definitely the worst but every time I had to move from lying to sitting, or sitting to standing for the next 2 months took more mental preparation, focus and determination than I had ever thought such a simple movement would need.  

Because one of the things they warn you about while recovering from DIEP surgery is a ‘tight tummy’.  Before the op, I understood this in theory because I knew that were taking out a huge ‘wedge’ of my middle and sewing me back together again.  What I didn’t realise is that in most cases, when they come to do the sewing-you-up-again they have to physically raise your legs in the air at a right angle, just so the two sides of your skin can actually meet.  Of course when you do this, you’ve hugely reduced the range of movement possible and what they really mean by ‘tight tummy’ is ‘we’ve sewed you up so tightly that it is now completely impossible for you to walk upright or lie flat without worrying you’re going to snap in half’.  In the days and weeks immediately after the surgery as I slowly started to get moving, walking short laps up and down the hospital corridors then my garden, adding more laps each day but bent over like a rickety old lady, only one image came to mind …

IMG_1301

Even now, a year after my surgery that ‘tight tummy’ feeling is always present.  It’s something that my brain has managed to accept as my ‘new normal’ and, to be honest, I’ve forgotten what I felt like before.  It’s not painful most of the time (an occasional twinge as the nerves damaged in the area start to regenerate) and doesn’t stop me from doing most things I could do prior to surgery. But it is a constant reminder of what cancer has done to me – a constant feeling of a weight sitting on my stomach, of the body being stretched, of a tautness that doesn’t ease. 

But that’s jumping ahead.  Back in the hospital I was feeling a little stronger every day, walking more, especially when the catheter came out and I had to resume peeing of my own volition (side bar: one thing they don’t warn you about before the op is that as well as pulling everything down when they join you back up again, they also pull everything up, which means that for a while at least it’s entirely possible to pee standing up.  TMI? Soz.) I also had to endure the humiliation of starting my period, entirely unexpectedly, while still in hospital. At it was unexpected I’d taken none of my usual sanitary products with me and despite being on a ward for women, the nurses said they simply didn’t have any to give me. What I was given was adult incontinence pants. An entirely necessary product for an entirely hideous problem but a bit humiliating when you’ve just got your period.  Thankfully, since my time in hospital the NHS policy has changed and alongside the male ‘essentials’ of razors (which were always provided) sanitary products will also be given to those women in need. Great news, but still a shocker that it’s taken until 2019 for the NHS to equate sanitary products as equally ‘essential’ as razors.  

Other things they don’t warn you about before DIEP surgery:

  1. That sneezing and/or coughing is agony and will make you think you’re about to spill your guts like a pinata.  Even now I still hold my tummy when I’m about sneeze.  Just in case. 
  2. That your first post-operative poo will be explosive, fuelled by a tonne of laxatives and all the air they pumped you with during your op.
  3. That they use staples to pin back your skin flaps (eurgh, flaps again, sorry) during the op.  I woke up to find myself covered in tiny red pairs of dots and thought either a tiny vampire or an over-enthusiastic crafter had had at me.

By the end of my day five in hospital, most of which had been passed in a haze of drugs, dozing, visitor chattering, staring at the ceiling and crying uncontrollably, I was both desperate to return home and terrified by the thought of it.  While hospital stays are never pleasant, there is also something reassuring about being in the bosom of the nurturing staff, knowing that should you vomit/faint/pee yourself/poop yourself/start bleeding uncontrollably from any orifices an experienced professional is easily at hand.  At home, even with family support, just having had major surgery and knowing that you’re currently being held together by plastic thread, glue and what looks suspiciously like packing tape is an intimidating prospect. Especially when the road to post-DIEP recovery is such a long one. 

More on my stumbling, rollercoaster journey on that road in ‘Recovery, Part Deux’.   

S is for ‘Show and Tell’ and ‘Surgery – The Big One’

p1010357-e1566141078610.jpg
/ʃəʊ ən ˈtel/
The practice of showing something to an audience and telling them about it.

Ever wanted to spend an evening in close proximity to a group of women who have their breasts out on display and keep encouraging you in for a closer look? Alright I get that for some readers that might sound like heaven but I’m not talking about the red light district of Amsterdam on a dirty weekend.  I’m talking about a clinical ward at my local hospital on a chilly autumn evening.  But it’s probably the first time Hampstead and Amsterdam have ever had quite so much in common.

And the reason for the gratuitous nudity?  It’s ‘Show and Tell’ at the Royal Free.  Or to give it it’s proper title, Breast Reconstruction Awareness Group. Because for all my glibness, there’s a serious point to the night.  It’s a rare chance for women who are facing the prospect of losing a breast and having a form of reconstruction to see how it really looks.  Not drawings in a pamphlet, or photos in a book, but real, living, breathing, scarred flesh.  With stories behind every reformed breast.

So a week before my scheduled surgery (which thanks to an admin cock-up had been booked in without time for any further meets with my plastic surgeon), I dragged a friend (bless you, you star) to the hospital for an evening of delights.  It started with a quick powerpoint presentation from one of the plastic surgeons at the unit, running through the different reconstruction options available (see C is for ‘Choice’) in very basic terms.  Up next was the Plastics Specialist Nurse who proceeded to terrify the fucking pants off me with the ‘what you can expect when you wake up’ speech that was, deliberately, honest and lacking in a sweet, sugar coating. Because none of these surgery options are easy rides, and it’s better to be prepared for how shit you’re going to feel when you come round.  But still, fuck, when you see the reality of the drains, the pain meds, the bair hugger (more on all of these later), you kind of hit peak terror.

After the terrifying talk of truth, it was free explore time.  Now I’m an immersive theatre nut, especially for those shows where you get to free roam a space and stumble across unexpected action.  But not even the craziest cheese-dreams of Punchdrunk could come up with a show where every door you open hides a bevy of bare breasts.  But that’s what you get at BRAG night.  Behind one door is a woman who has had a preventative double mastectomy with immediate implant reconstruction, behind another is a woman with the scars from a delayed DIEP reconstruction, behind another is a lady who had the LD reconstruction, using tissue and muscle from her back.  But the door I’m interested in is the one with ‘Immediate DIEP’ on the label, and inside I find 3 angels with bare breasts.  I think most women with a breast cancer diagnosis have to get their boobs out on display so often that you end up with zero boundaries, but to stand in a room tits out for an hour or so as other patients probe them – not literally but with questions – takes a special kind of strength.  Maybe because they were in the same position themselves not so long ago, and if they were anything like me, drew so much comfort from hearing true tales direct from the horse’s mouth about the surgery, the recovery and the aftermath.

Spending time with these women didn’t alleviate my fears about my upcoming surgery but it did allow me to see that there was light on the other side of the door. Now all I had to do was screw my courage to the sticking plate and kick open that door …

And so on to the ‘Big One’ …

A week after show and tell and I quickly discovered that the grim day surgery corridor of doom (See S is for ‘Surgery’. Part One and Part Two) is actually the grim surgery corridor regardless of your treatment or proposed length of hospital stay. So I was back to staring at the grey peeling walls at the end of November as I faced my third surgical procedure in 4 months.  I had certainly pressed the accelerator pedal on surgery – 45 years and 3 months with zero procedures that required me to be unconscious, then 3 doses of general anaesthetic in 12 weeks.

And my nerves had returned.  This time it was sheer terror as I was staring down the barrel of a 9 hour minimum operation, involving complex micro-surgery and scalpel cuts to three separate parts of my anatomy.  That morning I had again assumed the foetal position on the bathroom floor (see S is for ‘Surgery’. Part One), crying with fear and with the realization that this time I’d be coming home without my entire breast.  Scarred as my boob now was thanks to the previous two lumpectomy surgeries, the tissue inside was still mine and imagining it disappearing into some hospital furnace was not where I wanted my thoughts to wander.

It turns out crying took up an awful lot of my time that morning.  After the, now seemingly obligatory, bathroom floor blub, I moved on to crying in the hospital changing room.  Mostly at my almost entire loss of dignity, changing in what looks/feels like a run down storage closet while being harangued by time-pressured nurses as you try to pull the tightest pair of hospital stockings ever over your voluptuous calves.  Crying duties resumed shortly afterwards as I said goodbye to my brother and were doubled when my well-meaning surgeon hugged me and said ‘you can still change your mind, it’s up to you’.  I appreciate the sentiment love but your timing totally sucks.  All I wanted to hear from you right then was ‘I got ya’.

Because she, and my plastic surgeon, totally did.  The next thing I know I’m on the bed in the anesthesia room, someone takes my glasses away, I’m injected with something warm and I’m off with the fairies.

two person doing surgery inside room
Photo by Vidal Balielo Jr. on Pexels.com

For the next 10 hours I’m unconscious and under the knife.  10 hours is a long time.  For me it passes in seconds, but that’s a full and complicated day’s work for a surgical team.  It never occurred to me to ask how it all actually works – do they take loo breaks? Do they get bored and check their social media feeds? When it’s lunchtime does everyone bring a packed lunch and have a picnic round your body?  It’s probably best that I don’t know the answer to some questions but I’ve since heard that the team will take breaks while you’re out cold and that someone is charged with moving your limbs, head etc while you’re asleep so that you don’t stiffen up entirely, get pressure sores or, as some women do, lose their hair in the space where your head rests on the pillow.  It feels weird knowing that someone is manipulating your body like some benign puppetmaster while you’re asleep but as long as they’re not putting on a show (cue Julie Andrews singing ‘high on a hill sat a lonely goatherd’) I’m good with it.

A DIEP reconstruction is, in short, a miracle of modern surgical science and is mind-blowing when you really stop and think about it.   First up, in an immediate DIEP where the reconstruction happens at the same time as the mastectomy, a breast surgeon will remove the original breast tissue by cutting away the areola and nipple and ‘scooping’ the tissue out through the hole, leaving most of the original skin intact.  Then up steps a surgeon skilled in micro-surgery, so called because the blood vessels they’re working with are often under 3mm in size.  This plastics surgeon will make an incision from hip to hip, and remove fat, skin and blood vessels, including part of the ‘deep inferior epigastric artery’ which provides blood supply to the tissue in the lower abdomen and gives the DIEP its name. This removed flap of tissue is moved up to the chest and the blood vessels in it are reconnected to the blood vessels in the chest (which is where the microsurgery and a really good pair of glasses come in), before the tissue is inserted in through the hole in the breast skin and reformed to make a breast shape.   The skin from the tummy flap fills in the hole in the breast skin and the wide opening in the tummy is pulled together and sewn up.  Because the skin across the abdomen is pulled down during this process, the surgeon has to cut it away from the belly button and cut a new belly button hole which is sewn in place.   The patient is left with three scars – a circular scar on the new breast, a scar around the belly button and a long one running hip to hip across the lower tummy.

(Visual learners might like to look at this short animated video to understand the process – it’s animation only so there’s no blood and gore)

Sounds so simple doesn’t it?  Bit of basic rewiring and replastering?  But in reality the complexity of it is breath-taking and though I wish I’d never had to meet the surgeons who worked on me I will be forever in awe of their skill, commitment, focus and dedication.  I’m never sure what drives people to want to plunge their hands into the gunk, gore and grimness of cut open bodies but I’m glad these guys decided it was their purpose in life.

So 10 hours later and I’m awake.  I have zero memory of my time in the recovery room, which is probably a good thing, and the first thing I can remember is being wheeled onto my ward in my bed with the male nurse asking if I recognized ‘these’.  He was rather fit and wearing a vest top so I stupidly/druggedly assumed he was asking me if I recognized his tattoos.  Brief panic about whether I’d ever had any entertaining encounters with tattooed male nurses.  Then I realized he was asking me if I recognized the bags he was carrying.  My bags, which he’d grabbed from the lockers. Phew.  And yikes, embarrassing.

But any embarrassment was soon forgotten as I headed into post-op recovery.  Quite honestly the toughest time of my life so far … and the topic for the next blog.

So hurry back for bair huggers, bare boobs and bums and me nearly vomiting over the physiotherapists.

G is for ‘Grief’

/ɡriːf/

the emotional suffering an individual feels when something or someone the individual loves is taken away
adult alone anxious black and white
Photo by Kat Jayne on Pexels.com

I’ve never really dwelt that much on my physical appearance.  Or maybe it’s more that I’ve never had much confidence in it.  Certainly never thought of myself for even a moment as pretty or attractive or appealing in the way that Instagram would have you believe is the norm.  I was ill-fated as a child of the 70s – I needed glasses from an early age (those terrible NHS pink-hued beer-glass specs inflicted on 70s kids), developed awful teenage acne and my wonky teeth demanded those rail-track fixed metal braces that refused to let go of remnants of your dinner and earned me the nickname Metal Mickey at school (an all girls’ school, a cruel nest of vipers for those that were different).  I was short (definitely shorter than average at 5 ft 1) and dumpy with the big hips and backside that today look great on a Kardashian, less so on acne-riddled teen from South London in the mid-80s.  In short, I knew I was not dealt a great hand of cards in the looks department, that I was no-one’s dream woman, unless they’d had some particularly ripe cheese that night.  I knew I was lacking the traditional Western markers of beauty, as peddled by magazines, adverts and social media since the dawn of time, so I didn’t really fuss that much about it.  I never really put a huge amount of stock in the value of physical appearance. Of course I would have liked to have been thinner, prettier, taller (who wouldn’t?) but my genetics had determined otherwise and there wasn’t a whole lot I could do about it unless I was prepared to put my body in the hands of a scalpel-wielding plastic surgeon.  Which I wasn’t.  Then.  Ironic that last bit isn’t it?  Didn’t have a choice in the end.

My one saving grace was my hair.   As a child, teen and younger adult I was a copper-coloured redhead (it’s a little more muted and silver-streaked these days but I’m still a redhead at heart). At school this meant that in addition to ‘Metal Mickey’ I accrued the usual nicknames.  ‘Carrot top’.  ‘Duracell’. ‘Ginger nut’.  (BTW, side note on ‘ginger’, please don’t call a redhead a ‘ginger’ thinking it’s acceptable.  As the glorious Tim Minchin sings ‘only another ginger can call a ginger ginger’.) Not much fun at the time, or later when the boys started asking if the ‘carpets match the curtains’, but as I grew up I learnt to appreciate my copper tones.  I learnt to appreciate often being the only redhead in a sea of bland blondes and mousey brunettes (no offence intended).  And on my travels overseas, in SE Asia, Africa, South America etc I was a positive head-turning novelty.  Yes, my hair is about the only bit of me I’ve ever really liked.  And I know I’m a lucky son of a gun that I haven’t had to deal with chemo and the loss of that one part of me that was quite nice.

All this is a very long way round of saying, I never really thought that hard about my boobs.  I held so little stock in my physical appearance that I didn’t really give them a second thought.  They weren’t so massive they were an inconvenience or a literal pain in the back, so they got tucked away inside a range of M&S bras for years, without much attention paid.  I haven’t had children so they haven’t been used for breast-feeding, and although they’ve had some fun over the years in bed, they alone didn’t give me much of a sexual kick (anyone in search of a more potent erogenous zone would be sent further south).

But then you’re confronted with the news that you have to lose a breast.  And you have to face saying goodbye to part of you that has been there since you were born (although only coming to … ahem … prominence in early teens).  A part of you to which you are attached, both literally and emotionally.  I might never have given my breasts a huge amount of dedicated thought but that doesn’t mean that losing one is easy.  As my definition at the top of this post says grief is the emotional suffering you feel when something you have a bond with is taken away.  But how the hell do you grieve for a breast?

How do you grieve for the loss of a body part? An aspect of your intimate anatomy?  There’s no funeral service, no eulogies, no publicly acknowledged period of mourning, no closure. You go to sleep on a hospital trolley with two breasts and wake up with one, or both, absent.  There might be a new breast in place if you’ve opted for a reconstruction but the breasts you knew, stroked, squeezed into ill-fitting lingerie, cursed for being too big, too small, too weirdly shaped, too mismatched, too sore, too jiggly have gone.  Gone into the hospital’s medical furnace or onto glass slides in a pathology lab. The cancer has hopefully gone into that furnace too, but still, it’s a hard way to say goodbye.

In the forums and peer support groups for breast cancer patients, the debates about staying ‘flat’ post-mastectomy or opting for reconstruction are numerous.  For some women, the thought of waking up post-op and looking down to see only a space where once there was a breast is too traumatic a thought to countenance. ‘I couldn’t bear seeing myself flat’ is a common thread.  And when reconstruction surgery is a success, there is much delight (and much sharing of ‘aren’t my new foobs* amazing?’ photographs, which sends Facebooks algorithms into spasms and often results in these beautiful women being sent to FB jail).  Equally, however, some women opt to remain flat after their surgery.  This may be a medical necessity or it may be a deliberate choice, an embracing of the flatter, post-mx body with surgical scar as a symbol of the hard times endured and the difficulties overcome.  Some women use tattoos to cover their mx scars and they are some of the most heart-breakingly beautiful pieces of body art I’ve ever seen, a way to reclaim the body from cancer which has taken so much.  Either way, flat or reconstructed, these women have a strong sense of how they want their bodies to be shaped post-cancer.  No-one wants the scars, the implants, the reconstructed breast, but making a decision about how you look after breast cancer surgery is also about confronting a change a self.

And how do you grieve for this sense of self? Your self-concept? That element of your identity that is tied into your physical body? Because even I, someone who doesn’t place all my sense of value in my physical make-up, has to deal with the fact that post-op I am different.  There is less of me.  Some of me is in a different place from where it used to be.  I am transformed.  I, and the millions of women who face similar surgery, are not less than we were before. But I am not the same physical being I was before the surgery.  That is unalterably true.  And that will always impact on who I am.  I see that difference every day in the mirror, it is inescapable.   My new breast bears a large circular scar (not entirely unlike a tube roundel.  Bit weird). I no longer have a nipple or areola on that breast.  Just a blank expanse of skin, different in colour and texture to that around it. And another scar, pink and vivid, runs hip to hip just above my bikini line.  Oh and I have a new belly button too.  Well, technically the same belly button as my umbilical cord hasn’t moved, but all the skin around it did so there’s a new hole for it to show through. (The new belly button is heart-shaped. Cute in a still slightly scabby post-surgery kinda way.)

heart shaped red neon signage
Photo by Designecologist on Pexels.com

But the difference that cancer and surgery have made to my body is mostly only visible to me.  See me in my clothes, even see me in my underwear, and you wouldn’t know such major surgery had taken place.  I’m still the same dumpy, slightly greying redhead I was before.  Except I’m really not.  And how that physical change will alter me emotionally, psychologically, fundamentally is still to be born out.  I’m still in the midst of my grief of losing the old me.

Dealing with a dramatic physical change is never going to be easy, but facing a mastectomy in these complicated gender politics, shifting-sand, #MeToo times is very hard.  Women battle every day not to be reduced to a mere collection of body parts intended for the stimulation and pleasure of another. Page Three has long gone, but magazines, adverts, Instagram filters and voices in the street still suggest that a woman’s sexual identity is tied in to the mammary glands in front of her.  So when one of those glands has to be removed, as women we can’t help but feel that our sexuality, our sense of our sexual self is being threatened.  Even while our feminist brains refute the idea.  It perhaps doesn’t help that in the rooms of breast cancer consultants, plastic surgery department psychologists and cancer counsellors across the land, women are being asked ‘so how do you think your partner will cope with you having to lose a breast?’ or ‘how will you see yourself sexually after a mastectomy?’ or ‘will you be concerned about showing a new partner your post-surgery scars?’.  The emphasis sadly remains on how you might somehow be sexually reduced, in either your own eyes or that of another, by having vital, life-saving surgery on a body part that has no direct sexual function.  Another layer of grief and loss is added to the mix.

I’m afraid I don’t have any answers to the questions I’ve asked about how to grieve for yourself in this awful journey.  Grief is different for everyone and the way through the maelstrom of emotions will lead people in myriad directions.  I suspect, as with the death of a loved one, the grief of what has been lost physically and emotionally will never go away completely, only fade, or at least stop being such a persistent companion.  That new ways to move forward will be found.

It reminds me that when I met with the plastic surgery department’s psychologist prior to my surgery, she told me that she advises all her breast reconstruction patients to look at and touch their changed breasts as soon as possible after surgery.  Because the brain holds a ‘map’ of our anatomy, built up over years of looking at and touching our own bodies.  It’s probably not something most of us think about on a day-to-day basis.  We, of course, touch our own skin frequently – daily bodily functions require it.  And we see ourselves in mirrors or just by looking down.  But we don’t dwell on how we know that that body we’re seeing is ours. Because it’s just how it is, how it’s always been.  Then when you have a mastectomy with a reconstruction suddenly there’s new skin, flesh, scars where the old you used to be.  And your brain doesn’t know this new you yet, hasn’t had time to map it out. So you have to re-educate your brain to accept the new bits.  Touch the skin on your new breast, your new belly button, so that your brain learns this is how it feels, so it creates new neural pathways that allow the brain to recognise what you’re touching is really you.

Grieving for what we lose through cancer is hard.  It’s hard to articulate, hard to convey to others, hard to understand yourself.  But maybe helping your brain to learn the new you can be part of the healing process.

 

 

*foobs = fake boobs.  Or, my personal favourite, ‘belly boob’ if you’ve had the DIEP surgery.

D is for ‘Decision’

/dɪˈsɪʒ(ə)n/

a conclusion or resolution reached after consideration.

D is for decisions.jpeg

Back in November when I wrote the ‘S is for Schrodinger’s Cancer’ post about learning that I needed a mastectomy, I said:

“I can honestly tell you that now, over 7 weeks since I first heard that devastating news, I still haven’t processed it, understood it, dealt with it, accepted it [….] even now I know I won’t be able to explain or articulate how it feels to know that’s what my future holds.”

And now, nearly 3 months after that announcement and 2 months after the surgery itself, that all still holds true. It’s why I’ve held off writing this post for so long.  It all still hurts too much.  Not just the surgical scars, which at seven weeks post-op, still twinge a bit in a ‘time for some paracetomol’ kinda way.  But the emotional scars.   I have to look at the physical scars every day when I look in a mirror but the emotional ones are deeper, uglier and more painful to probe.

So I’m going to put the scar-probing off for a bit longer (I can hear the collective sigh of relief from you all, dear assembled readers) and wind back the clock to that day in September when I was first told the mastectomy news.  This is because in the wise words of Maria Von Trapp/Julie Andrews, ‘let’s start at the very beginning, it’s a very good place to start’.

So quick recap – boob cancer diagnosis in July, first surgery in August, epic fail, second surgery in August, equally epic fail, ‘oh so awful bedside manner’ surgeon tells me only recourse now is a mastectomy.  And with that I declare that the first thing all doctors should be taught at med school is that when you’ve just delivered dire news to a patient they are guaranteed not to listen to what you say next.  You’ve just sent their brain into an anxiety vortex, full of fog and fear, where the cotton wool of panic gets wedged in between the eardrums and the synapses.  So when I heard the word ‘mastectomy’, I heard nothing else.  I know that Mr Sensitivity laid out of the different options open to me (see ‘C is for Choice’) because he did drawings again and I sort of nodded a bit but, with brain in auto-shut down mode, nothing registered.

When I left the room I did know two things for certain though.  One, I never wanted to see that surgeon again.  And two, I wanted the mastectomy done asap without additional reconstructive surgery.

I was only right about one of those things.

Now ditching a surgeon in the middle of treatment is never ideal.  My replacement surgeon (hurrah for the replacement surgeon) later told me it was a ‘drastic’ move and that she’d never heard of it happening at this point in the process before.  But for me it was essential.  I’m not casting aspersions on the consultant’s skills as a surgeon.  Both ops I’d had done under his knife were quick, neat and without complications (beyond not doing the full cancer-removal job that is).  But I’d lost all faith in him as a source of valid, coherent, understandable medical information.  And when you’ve just been told you need a major surgical procedure that will radically, and irrevocably, alter your body, you need to feel that you can ask anything, discuss anything with the person who is going to wield the scalpel.  After Mr Surgeon’s frequent faux-pas (telling me off for being late to surgery, discussing my jellified boob tissue etc – see previous posts) the nail in his consultant coffin was the way in which he dismissed me as ‘not urgent’ to a fellow doctor.  Now, it’s true, in purely medical terms my mastectomy was not urgent, in that I wasn’t at death’s door or at risk of stepping across the threshold if the op wasn’t done stat.  But as my BCN (Breast Care Nurse) later pointed out, repeatedly, my life had been on hold since my diagnosis in July, I wasn’t working due to the demands of treatment and the anxiety of having Damocles’ sword of further surgery hanging over my head was starting to impact on my mental and physical health.  So it was urgent.  I suspect my BCN also had her NHS cancer pathway targets in mind but still, I’ll take any help where I can get it.

The hoohah that followed is too long-winded and dull to go into here (mostly involved complaints to the PALS (Patient Advice and Liaison Service), letters of complaint drafted to the hospital Chief Exec, and much phone-calling between me and my BCN, who by now clearly thought I was insane and a massive pain in the butt) but eventually I got to meet a new surgeon, Mrs Surgeon.  Mrs Surgeon who actually looked at me while she talked to me, Mrs Surgeon who gave me her mobile number and told me to use it whenever I needed to, Mrs Surgeon who lifted ten tonnes of anxiety bricks from my shoulders.  Since then things haven’t been 100% smooth sailing with Mrs Surgeon either but the seas of breast cancer treatment have been a damn sight less stormy since she’s been at the helm of the good ship ‘Lop Off That Breast’.

So that was the one thing I was right about.

The thing I was wrong about is more complicated.

In the brain fog of fear, I had decided that the simplest, quickest way to get some control back over my own life would be to have the mastectomy done as soon as possible and not have reconstruction.  One quick hack (well, 4-5 hours of expert surgery), and I’d be one breast short of a pair but at home, recovering, by that evening and within a week or two able to resume a normal life.  As I live alone one of my biggest anxieties around my cancer diagnosis and treatment has been how I would cope if severely debilitated, how I would avoid becoming that nuisance burden on family and friends who needed assistance for days, maybe weeks.  Proudly independent, fiercely protective of my private space (both physical and mental), the idea of being reliant on anyone else for basic care, being a drain on someone else’s energy and resources was both terrifying and humiliating. So I wanted the quickest surgical option – table, knife, home, recover, done, move on.  I wasn’t factoring in anything at all about how being ‘flat’ would make me feel – how I would look in and out of clothes, how I’d have to reconsider the way I dressed, how I would feel about any new partner (hahahahaha) seeing a scar where a breast used to be, how missing a part (still a pretty pert part) of my anatomy would hit me.  I didn’t think about any of the emotional shit-storm that would follow my decision.  I had pulled on my big girl practical pants and was thinking about pure function, rather than raw emotion.  I’m a British child of the 70s.  We were brought up to back slowly away from raw emotion.  Like it was a bear that might eat you if you turned and ran.

I had assumed that once I’d spoken my decision (breast off, no replacement please thank you very much) out loud, everyone would nod sagely and say ‘of course, whatever you want’.  But they didn’t.  No-one did. They all said ‘are you sure?’ (while giving me the ‘she’s quite clearly insane’ side eye).  They said ‘you’re very young [ha, still can’t get used to that], you’ve got a lot of life ahead of you, don’t you think reconstruction might be a better option’.  They said ‘think about wearing summer clothes’, they said ‘what about when you meet a nice new man’ (people do tend to morph into the reincarnation of my nan with her endless (and missed) ‘got yourself a boyfriend yet?’ at these points). They said ‘how will you feel when you look in the mirror?’.  They said ‘think about it some more’.

Now no-one, at any point, suggested that not have reconstructive surgery was a bad decision.  For some women, for various reasons, it’s the only option.  And for just as many women it’s a positive, body-reclaiming, life-affirming, control-retaking option (more of that in my next post).  But what everyone else in the world could see that I couldn’t was that I wasn’t making a wrong decision, just a decision for the wrong reason.  I was making a choice based purely on fear.  The fear of agreeing to a reconstructive surgery that would be a major physical intervention, that would make me dependent on others in the short term, and have serious long term consequences for my future health.  The fear of signing up for further surgeries later down the line (almost all reconstructive options require follow up surgery at some point).  The fear of dragging this whole bloody cancer lark on for even longer when all I wanted to do was be f**king normal again.

Short-term panic was blinding me to the long-term consequences.  Everyone else could see it and they were gently nudging me down a slightly wiser, and wider, path.  With reassurances from my amazing family (especially my brother) that they’d provide whatever support I needed in the immediate post-op aftermath, and a gradual dawning awareness that I needed to think about the rest of my (hopefully long and cancer-free) life, rather than just the next few months, I realized that maybe I shouldn’t limit my options to the basic chop.

Of course, that decision itself opened up a whole bewildering array of choices (see ‘C is for Choice’) that I’d never even known were possible (having a life-threatening illness really does open up your eyes to the wonders of the medical world. If I wasn’t busy being  f**king terrified most of the time, I’d be really quite astounded at what is possible).

But I knew, hopefully in a better way than I ‘knew’ I didn’t want reconstruction, that I didn’t want an implant.  Again, there’s nothing judgey in that decision, just a terror of more and possibly regular surgeries (implants don’t grow old and saggy in the way natural boobs do so further surgeries to ‘even up’ the old fellas are usually recommended.) So I had ruled out one of the many branches of reconstruction, and once I’d started down the path of autologous reconstruction everyone (of a medical bent) told me that the DIEP reconstruction was the ‘gold standard’ of plastic surgery.  Now DIEP is shit scary major surgery – minimum of 9 hours on the operating table, 5 or 6 days in hospital (the first 24 hours of which are under very close monitoring) and at least 8 weeks before you can even consider returning to normal activities.  The list of possible complications and the size of the disclaimers on the consent form are enough to send even those with the least anxiety-prone natures into a spin so the idea of voluntarily submitting to the process put me into full on panic mode. But I discovered that once you’ve shown you might even consider the procedure, things move so fast that you feel like you’re being chased down hill by a surgical snowball that is getting bigger, scarier and closer by the second.

snowball

One minute I was being offered the DIEP surgery as an option, next I was seeing a psychologist to check I was aware of the life-changing nature of the surgery, then I was going to a ‘show and tell’ evening where women who’d had the procedure got out their goods for us newbies to stare at (more on both of those in the next blog), then I was getting the ‘this shit is real’ talk from the plastics nurse (which quite frankly terrified me even more than I was already terrified which I hadn’t realized was possible as I thought I’d reached peak terror) and the next I was in a CT machine getting blood vessels checked.  All rounded off with a nicely embarrassing photo shoot where you get your boobs and belly out for the hospital cameraman, reassurances uttered that it’s all just for the ‘records’, while internally you’re thinking this is going on someone’s ‘fat-red-heads-facing-surgery’ porno page.

Somehow I’d stumbled from appointment to appointment and found myself being persuaded away from a mastectomy with no reconstruction and into a major surgical procedure.  Now I’ve always known I’m easily led but even for me this was a big leap.  It’s not like being talked into buying those red suede stilettos that look good in the shop but are impossible to walk in and will just crumble away in the rain.  There’s no option of returning your new boob to the shop if you don’t like it, even if you have the receipt.  This is life- and body-altering surgery that will leave you with large, permanent scars and changes to body sensation and sensitivity.  Something that will change you forever.

And I think I just signed on the dotted line.

Next up – ‘G is for Grief’ – how do you adjust to losing part of yourself?

 

C is for ‘Choice’

/tʃɔɪs/

  1. An act of choosing between two or more possibilities
architecture black and white challenge chance
Photo by Pixabay on Pexels.com

A cancer diagnosis is bewildering.  You are bombarded with complex medical data; confusing details about staging, grade, type; an onslaught of information about treatment paths, surgical options and prognosis.  You feel lost.  Like really lost.  In a forest with no marked path, no signposts, no GPS signal, not even a bit of f**king moss on the side of a tree, lost.  And then you get told you need a mastectomy and you need to make a choice.

Because for younger women with breast cancer (yes, it still freaks me out that in the cancer world I’m ‘young’) in most cases, it’s not as straightforward as ‘we have to remove your breast to get rid of the cancer’.  There are options.  Lots of options.  Lots of make-your-f**king-head-spin-with-uncertainty-doubt-confusion-bewilderment options.  At a time when your ability to make rational, well thought-through decisions has been severely eroded by sheer terror.

I’m going to write a blog post later about my own decision-making process and how it was flawed (thankfully not permanently) due to panic, fear and red-tape mistakes but for now I’m going to lay out the most common choices spread out in front of breast cancer patients needing a mastectomy so you can understand how bewildering it can be.  It’s kinda like one of those ‘Choose Your Own Adventure’ books that I was addicted to in the 80s.   You know the ones, where you get asked ‘Do you open the locked door with the big red cross on it (turn to page 81) or take the passage with the sunny garden at the end (turn to page 89)?’ And when you stupidly open the locked door and turn to page 81, it says ‘there’s a big poisonous snake inside which bites you and you die a lonely agonizing death’.  Except in this delightful Choose Your Own Breast Cancer Adventure, you can’t flip back to your original choice, choose page 89 instead and have a do-over.

When initially told that you need a mastectomy, the choices seem limited:

Have a mastectomy to remove the breast and the cancer vs Not having a mastectomy and face the significantly increased risk of a cancer death at some point in the future.

That decision probably isn’t too hard to make. It’s a no-brainer right? Lose a breast, increase your chances of not dying yet.  But bare in mind even the best decisions have consequences and it’s likely that for many women the psychological impact of losing a breast, even if it saves their life, is going to sneak up on them at a later point.

And while choosing not to have a mastectomy closes many doors, opting for the surgery opens up a plethora of others:

Have a mastectomy and remain ‘flat’, with nothing replacing the lost breast (apart from maybe a prosthesis or the wonderful ‘knitted knocker’) vs Have a mastectomy and then have a breast reconstruction

This decision is harder to make and depends on so many factors – current medical need, personal emotional and psychological feelings about body image, sexuality, intimacy.  I’ve seen many women talk about how they simply couldn’t bear the idea of waking up from a mastectomy surgery to see that they were ‘flat’, while others have felt able to embrace that flatness more readily. Everyone is different and, resurrecting the CYOA metaphor, what seems like the obvious path to one (go to page 94) is a path filled with thorns for another (go to page 102).

But opting for reconstruction isn’t the end of the decision-making because then you have:

Immediate reconstruction vs Delayed reconstruction

And whichever one of those two you pick then you still have to decide between:

Having a reconstruction using an implant. vs Having a reconstruction using autologous tissue (ie using some of your own body tissue)

Another difficult decision and depending on factors both personal and medical.  For some women using your own tissue just isn’t an option (you need to be carrying a little bit of extra weight and have a viable blood flow through the various veins and arteries that will be moved) while for others the idea of an implant is anathema.

Then regardless of your choice here, more options spiderweb their way out, each with their own set of pros/cons, risks/benefits:

Implant reconstruction:

One Stage procedure – either fixed size or expandable;

Two stage procedure.

vs Autologous Tissue reconstruction:

DIEP – using tummy tissue;

TRAM – using tummy tissue and muscle;
LD – using back tissue and muscle;

SGAP/IGAP – using buttock tissue;

TUG/PAP – using thigh tissue;

As you can see, the array of decisions that have to be made is overwhelming, laden with jargon and requiring the sort of cost/benefit analysis that only investment bankers normally undertake.

So what does it all mean?  Here are some quick (or not so quick, as I’m quite a wordy type of gal) definitions and explanations:

Immediate or Delayed Reconstruction

After a mastectomy, in which all the breast tissue is removed from either one or both breasts, women can have immediate or delayed reconstruction.  Immediate reconstruction simply means that the mastectomy and the reconstruction takes place at the same time, during the same surgery.  Usually this means that a breast surgeon removes the breast tissue, then a plastic surgeon steps in to take over the reconstruction element, although sometimes a breast surgeon will do an implant reconstruction. As a consequence the surgery is long but all the major surgical processes are done in one sitting (or one lying down).

For various reasons sometimes a delayed reconstructionis necessary, with the mastectomy done in one operation, and the reconstruction done months or sometimes years later.  This might be because further treatment is needed first (such as radiotherapy) that might damage a reconstructed breast, or because the woman wants to delay making a choice about the reconstructive opportunities open to her.

Implant Reconstruction

Using surgical techniques developed for cosmetic boob jobs, women can opt to have silicon implants to reconstruct their missing breast(s), using either a one or two step procedure.

  1. One Step – either a fixed size implant or an expandable implant can be used. The fixed size simply slips a silicon implant behind the chest muscle to create a breast shape.  An expandable implant is used when the chest muscle needs to be stretched.  The implant has the usual chamber of silicone gel and an additional hollow inner chamber that is, over a period of a few weeks, filled slowly with saline to stretch the muscle and give the final shape.
  2. Two Step – this procedure involves inserting a temporary hollow ‘expander’ under the chest muscle, which is, like the expandable implant above, slowly filled with saline. When the muscle is sufficiently stretched, an operation removes the temporary expander and replaces it with a permanent silicone implant.
Benefits Limitations
Simple operation with shorter recovery time Several visits to the hospital might be needed for tissue expansion
Less scarring on the body Implants can feel cold and hard
Balanced breast outline Reconstructed breast might not have same natural ‘droop’ as natural breast
Further surgeries are likely to be needed as implant breast will not change over time as the natural breast will
Risk of implant leaking or the tissue around the implant tightening (capsular contraction)

Autologous Reconstruction

Reconstruction using tissue from your own body can take many forms:

  • LD Flap – using tissue from the back

A Latissimus Dorsi flap (LD) uses the LD muscle from the back as well as overlying fat and tissue.  The flap and its blood supply is tunnelled under the skin in the armpit, then positioned on the chest to make a new breast shape. Often an implant is also used to give more volume to the new breast.

  • DIEP/SIEA/TRAM flaps – using tissue from the tummy

These three surgeries (with DIEP being the one most commonly used) involves detaching tissue and blood vessels from the tummy then moving the tissue to the breast and connecting it to a new blood supply in the chest with microsurgery.  The DIEP and SIEA use different blood vessels (hence the different names) while the TRAM also takes some muscle in addition to the fat and skin.

  • SGAP/IGAP flap – using tissue from the buttocks

Again fat and skin is taken, from either the upper or lower part of the buttocks and moved to the chest to form a new breast shape.

  • TUG/PAP flap – using tissue from the thigh

Both of these procedures use fat and skin from the upper inner thigh, with the TUG additionally using muscle.

Each of these procedures has their own cost/benefit balance to address but overall:

Benefits Limitations
Can give a more natural look to the reconstructed breast Involves more scarring both on the breast and on another part of the body
The breast will age and change shape with you, reducing the need for further surgeries Surgery is longer (can be up to 14 hours) so time needed in hospital and post-op recovery is much longer
Some procedures might lead to restriction in movement (ie LD might impact arm movements)
A reconstructed breast will have less sensation than the original breast
Risk of the flap failing and needing to be removed
Further surgery might be needed to balance out breasts, reconstruct nipple etc

You see? Confusing, bewildering, overwhelming and frightening.  Choosing what is right for you involves choosing between a wide array of options that will leave you scarred, hospitalised, in pain, immobilised and altered beyond reckoning.  But it is also a choice that is necessary to save your life.  So you do it.  With help from the medical team around you, your family, your friends, and, for me, the peer support on some amazing Facebook groups.

How I made that choice, the emotional and psychological impact of it, the physical trauma of it will come later.  But I wanted to end with a film analogy (because I’m a movie geek after all).  Making these choices reminded me of a scene from (one of my all time favourite films) ‘Indiana Jones and the Last Crusade’.  As Indy faces the Grail challenges, he is asked to spell out the ‘name of God’ using tiles on the floor.  Choose the wrong letter and the tiles give way, potentially sending him tumbling to his death in a massive cavern below.  At each step he has to trust that his knowledge, his education, his experience will leave him on firm footing.

ch1Iv
Indy’s ‘Name of God’ test – click here to see the video

And as breast cancer patients, we too have to rely on the experience and education of the medical experts, to guide us across the perilous floor of mastectomy choices, to solid ground on the other side.

 

For more detail about breast reconstruction options, please go to:

Breast Cancer Care – Types of Breast Reconstruction 

Macmillan – Types of Breast Reconstruction 

British Association of Plastic Reconstructive and Aesthetic Surgeons – Breast Reconstruction

H is for ‘Help’

\ˈhelp 

  1. to give assistance or support to; 
  2. to make more pleasant or bearable;
  3. to be of use to 
background brick wall bricks brickwork
Photo by Pixabay on Pexels.com

I started crying on the bus the other day.  I burst into tears at the drop of a hat these days – if someone hugs me a little longer than usual, if a friend drops an unexpected ‘love you’ into an email, if I think about the mountain ahead of me I have to climb, if they show that advert about kittens not being able to find their litter tray.  Really, anything sets me off.  But this time, on the bus, it was the words to a song.  Rag ‘n’ Bone man shuffled on and was singing ‘Love You Any Less’:

Sunlight is too much for you to bear
It’s high time you came up for air
Don’t hide a single thing behind your perfect skin
Don’t keep your secrets in a prayer

There is nothing you can say or do
I won’t cut you loose, no
So break the silence
We know that we can brave it all

If you’re hoping we’ll be home
Don’t be afraid to ask for help
It won’t make me love you any less

It’s a beautiful song about letting a lover (or friend) see everything about you, even the things you’re embarrassed by or ashamed of.   But it took me a while to figure out why that would trigger a tear-tsunami on the bus.  I don’t have perfect skin to hide things behind, I certainly don’t pray, I’m absolutely pants at keeping secrets and I don’t even have a lover to bother with all that stuff anyway so what was it that got to me?  Eventually it dawned on me.  It was the lines ‘If you’re hoping we’ll be home, don’t be afraid to ask for help, it won’t make me love you any less’.

Because asking for help is something I’ve struggled with since day one of my cancer diagnosis.  It should be the simplest thing in the world.  Saying ‘excuse me, I need help today’.  But it’s not.  It feels like the biggest obstacle, the largest wall to try and climb. I mean even Jon Snow would balk in the face of the Wall holding back the wildlings of my fears and anxieties. That’s a ‘Game of Thrones’ reference.  I don’t watch it but it sounds cool.

And I’m not alone in finding asking for help hard. In the cancer chat forums and the Facebook groups for women with breast cancer, there’s almost always an active thread about being afraid to ask for help. But why?  Why is it that when you’re facing a life-threatening illness and treatment that can leave you exhausted and immobilised it’s so difficult to reach out for help? I have a few theories, none of them rigorously or scientifically tested and based purely on my own experience of my breast cancer and interactions with women facing the same situation.  Here we go, read this in your best ‘Top of the Pops’ countdown voice:

Barriers to Asking for Help

  1. We’re British – A bit flippant maybe but there’s a nugget of truth in the stereotype of the stoic Brit, all stiff upper lip, no tears please, Monty Python’s Black Knight ‘I’ve had worse’.  It’s not in our national nature to admit weakness or defeat, to accept that now is the time to ask for help.  We keep our chin up and soldier on alone saying ‘I’m fine’ in a cheery tone to everyone who asks even when we’re not, even when by doing so we’re cutting off our nose to spite our own face (Brexit anyone?) and what we really need is a big dose of help.
  2. Independent spirit – most of the younger women I know who are dealing with breast cancer right now are strongly, fiercely independent. They manage their careers, run homes, support families, interact with wide friendship groups.  Generations of women before us have fought for our right to lead independent lives and we revel in the freedoms it gives us.  As someone without a partner I’ve lived alone, paid my mortgage, kept on top of a demanding job, thrived on a busy social life and travelled the world independently, happily aware I’m not reliant on anyone.  And then suddenly you might just need support.  And it’s terrifying to admit that you might have to set your independent dial on low for a while.  Going through breast cancer treatment means we cede control over our own bodies to other people.  So to voluntarily relinquish control on other aspects of our lives as well is incredibly hard.
  3. Embarrassment – it’s difficult to admit you need help, that you’re struggling, that you’re not coping and it’s embarrassing to have to directly say to someone ‘could you do this for me? I can’t manage’. If being repeatedly asked to strip naked and have your intimate parts pored over and prodded isn’t enough to wound our pride, then asking for help certainly is.
  4. Guilt – most of us are swimming in a swirling pool of murky guilt every day – guilt that you didn’t return that call from your mum, that you forgot a friend’s birthday, that you fed your kids fish fingers again because it was easier than an argument, that you ate the last three jaffa cakes in the box (or is that just me?) With a breast cancer diagnosis, you add feeling guilty that you’re a burden to the mix. Everyone leads busy lives so if you ask for help with even a simple task you’re piling on extra weight and, like a game of ‘Buckaroo’, you only need to add one small cowboy hat to set that donkey kicking (people remember that game, right? Or am I really showing my age?). No-one ever wants to be the extra burden, that extra cowboy hat, so it’s easier not to even ask.
  5. Fear of rejection – asking for anything always holds the possibility of getting a ‘no’ in response. And when you’re asking for help at one of the most difficult times of your life it’s horrible to contemplate that some in your friendship groups or family might not want to be bothered to get involved. That by testing the limits of those relationships you might find them wanting, and that those you thought would step up actually step away.  So it’s easier not to ask.  If you don’t ask you, you won’t have to deal with the crumbled remains of lost friendships.

All of these things, and I’m sure many more besides, create barriers to proactively asking for help, even when it’s most desperately needed.

If There’s Anything You Need …

It seems strange to find it hard to ask for help though, as when someone is having a crisis in life, be it a serious illness, a bereavement, a period of depression or similar, often the first thing said is ‘if there’s anything you need, just let me know’.  I’ve done it myself, a zillion times.  It’s a default setting, programmed into us by polite society, to fill a gap when someone we know is facing something awful and we’re powerless to directly intervene.  Usually the offer is entirely genuine and well-meant, although it can also be a platitude, spoken as a reflex when it’s hard to think of anything else to say.

In most cases though, that ‘just let me know’ never happens.  There’s a gulf between the offer and the act.  The gulf isn’t intentional, it’s just that by saying ‘let me know’ we put the onus on the person in crisis to be pro-active, usually at a time when they’re daily struggling to function at even a basic level.  We’re asking that person to not only break down all those barriers to asking for help but also be organised and aware enough to come up with ideas of the practical help they need.  And that, in truth, is probably not going to happen so the ‘let me know’ is not acted upon and it’s assumed that nothing is needed.

Now, most ordinary folk do not have Derren Brown-esque mind-reading skills, so don’t expect a friend to suddenly turn up with the specific book or chocolate bar you’re dreaming of that day, but there are certain basics that are pretty common requirements when going through chemo, recovering from surgery, suffering radiotherapy exhaustion (to focus on cancer as the cause of the crisis). So rather than reaching for the default ‘if there’s anything I can do, let me know’, maybe we could think for just a moment about what might be needed depending on the circumstances of the particular person we want to help (whether they have a partner, kids, live alone, are immobile, unable to drive etc) and resolve to do that, without needing that person to pluck up the courage to ask.

I did a quick straw poll on the amazing Facebook peer support group, Younger Breast Cancer Network, to see what my fellow breasties would have loved friends or family to do without being asked and this was their wish list:

  • School run – being offered help with getting the kids to and from school can be a life-saver for exhausted breasties, especially if treatment means they are unable to drive for a while;
  • Play dates – sometimes a nap in the afternoon is the only way to get through the day when treatment is sapping your energy, so having someone take on the kids for a few hours, or even a whole day, can be heaven. Great for mum and great for the children, who may get fractious when they’re stuck inside all day as mum is too poorly to take them out, or get upset at seeing the side effects take their toll on her.
  • Pet care – taking the dog for a walk can be a great way to get a bit of exercise and fresh air, but on some days even getting out of the door could be impossible, so a friend turning up to take the pooch for a poo is a blessing.
  • Shopping – the evolution of online shopping means being ill no longer leads to eating nothing but that out-of-date pot noodle you were saving for a hangover, but an offer to get in fresh, hand-picked fruit and veg (rather than the wonky carrot from the bottom of the crate that we all know you get when you order online), and maybe a little treat, is very welcome.
  • Meals – chemo exhaustion or post-surgery restrictions on movement can make cooking difficult. Microwaves and frozen meals are a lifeline but a mate popping round with a home-cooked casserole, or even turning up with a take away, can prove a real morale booster.
  • Cleaning/laundry – again, chemo and surgery often curtail a breastie’s ability to do basic household chores. So nipping in to whizz round the hoover, stick some laundry in the machine or even put the bins out, can help someone feel more human.
  • Company – often all you need when you’re ill is a bit of company. Someone to have a cuppa with, share a few biscuits, a bit of gossip and some crap TV.  And if you do make plans to visit someone, don’t cancel at the last minute (unless you’re really very poorly yourself or there’s a genuine emergency).  You might be the only person they’ll see that day and suddenly having the promise of a visit withdrawn can cause a tumble into a very low mood.
  • Messages – let someone know that you’re thinking of them. Check in on them by text.  During treatment not everyone feels up to talking or company but a text message asking ‘how are you?’ can be a reassurance that they’re in someone’s thoughts.  And don’t do it only the once when they’ve just had an op or had the first chemo.  Do it every now and then (you don’t need to be obsessive, no-one needs a stalker).  A simple text message can be as good as a hug on a bad day.

Emotional Help

Not all forms of help are physical, practical ones.  And sometimes, the need for help goes beyond that which a friend, family member or loved one can offer. Sometimes professional support is required. Taking the step to seek that out can be as difficult as asking for help from a friend.  Unlike (sweeping generalisation alert) Americans, we’re not a nation who immediately turn to counsellors or psychiatrists for help with mental health issues.  Despite massive leaps forward in recent years, with plenty of high profile campaigns on mental health awareness, there’s often still some stigma attached to talking therapies.  Well, bullshit to that.  When you need help, you need it and there shouldn’t be any shame in admitting it. You don’t need to shout your therapy appointments from the rooftops if you don’t want to but when faced with a life-changing illness talking to a professional is a powerful coping mechanism. Often cancer patients don’t feel they can share the full extent of their anxiety about their illness, their treatment and their future with friends, partners, parents, siblings etc for fear of worrying them at an already difficult time, so an outside, independent source of support is vital. I took the step of seeking out a counsellor as soon as I was diagnosed and I’ve worked my way through many a soggy tissue in her company in order to be able to be less tear-streaked in my daily life (more on that in a later blog).

There are many paths to getting help with the emotional and psychological scars of cancer:

  • Oncology counsellors – most breast cancer units will have access to specialist oncology counsellors and can refer patients who ask for help; your GP should also be able to refer you if you wish.
  • National cancer charities – some of the larger breast cancer charities have helplines that can offer emotional support or point you in the right direction to get help, and some have cancer support centres for pop-in sessions – try Breast Cancer Care, Macmillan, Breast Cancer Haven or Maggie’s.
  • Local cancer charities – some independent local cancer charities offer free counselling services (my counsellor is from the splendid Cherry Lodge) and your Breast Care Nurse should be able to give you information on the ones nearest to you or dive onto Google.

Medication

For some, counselling is either not possible or not enough and medication to deal with anxiety or depression becomes a necessity.  Again, there is no shame in turning to pharmaceutical support at such a difficult time, to stop the anxiety monkeys running riot in your head and to make the world seem a less intimidating and scary place.  I’m not a doctor so I’m not going even try and offer advice on this one.  Your GP should be your first port of call to chat about the options open to you.

ground group growth hands
Photo by Pixabay on Pexels.com

Peer Support

If popping a pill or lying on a couch (although no-one really has couches these days. Ikea’s best armchairs are so psychiatry de jour) is too much then turning to peer support groups can offer a huge source of comfort, knowledge, experience and, unexpectedly but importantly, laughs.  The ones below are just a few of those I’ve stumbled across:

Breast Cancer Care www.breastcancercare.org.uk

There’s a great online chat forum covering everything from breast cancer symptoms and diagnosis to surgery and chemotherapy.  BCC also offer the wonderful ‘Someone Like Me’ service where you can be paired up with a woman in a similar position to yours (both in terms of life style/stage and diagnosis) for email or phone contact and support.

Macmillan  www.macmillan.org.uk

Online information and phone support, plus another useful on-line chat forum, although Macmillan cover all cancers, rather than just breast cancer.

Younger Breast Cancer Network

www.facebook.com/YoungerBreastCancerNetwork

A private facebook group for younger women (45 and under) with breast cancer. A genuine sanity-saving group of superb, strong women whose wealth of knowledge and lived cancer experience is a goldmine.  Their motto is #inmypocket and, as I’ve said elsewhere, at every appointment I’ve had, every scan, every surgery, I’ve felt like there are a 1000 women holding my hand. No matter what time of day or night you post, there is always a swift, generous and honest response.  To sign up, search for ‘Younger Breast Cancer Network’ on Facebook and message the public page.  One of the lovely admins will be in touch so you can join the closed group. Posts to the group will not show up on your main Facebook page.

Building Resilience in Breast Cancer (BRiC)

www.facebook.com/resilienceinbreastcancer/

Another private Facebook group for women at all stages of breast cancer treatment or moving on after treatment has finished. Established in 2015 by Professor Naz Derakshan, who specialises in the cognitive neuroscience of anxiety and depression at Birkbeck University of London, the group helps members engage in guided discussions on research intothe psychological impact of cancer diagnosis and treatment on cognitive health and emotional well-being.

Shine Young Adult Cancer Support

www.facebook.com/groups/shinecancersupport/

One more private Facebook group for adults in their 20s, 30s and 40s with all forms of cancer.  Another great source of support and information, plus lots of local meet-ups.

Help Me If You Can … 

So if as a breast cancer fighter you’re ready to go all Jon Snow (the GoT guy, not the newsy tie guy), climb that wall, confront your wildlings and maybe use one of the ways here to ask for help.  Or you could just put the Beatles on repeat when anyone comes round …

When I was younger, so much younger than today
I never needed anybody’s help in any way
But now these days are gone and I’m not so self assured
Now I find I’ve changed my mind, I’ve opened up the doors

Help me if you can, I’m feeling down
And I do appreciate you being ’round
Help me get my feet back on the ground
Won’t you please, please help me?

S is for ‘Schrödinger’s Cancer’

‘S’ is also for ‘scanxiety’.

white and brown siamese cat inside chest box
Photo by Pixabay on Pexels.com

In 1935 Austrian physicist Erwin Schrodinger developed a thought experiment in order to stimulate discussion around the widely accepted but problematic Copenhagen interpretation of quantum mechanics.  The Copenhagen interpretation posits that physical systems do not have definite properties until they are observed and measured.  Once observed and measured, the system ‘collapses’ into one or other of the possible ‘definite’ states.  So it’s kind of like a sciencey take on the old philosophical conundrum ‘if a tree falls in the woods and no-one hears it, does it make a sound?’.

But as Schrodinger was a physicist not a philosopher, he wanted to point out the apparent absurdity of the Copenhagen interpretation and so created his famous thought experiment, which ran thus:

Put a cat (a theoretical one, not a real live fluffy kitty, even 1930s scientists had boundaries) in a steel box with a Geiger counter, a tiny amount of radioactive substance and a vial of poison. The amount of the radioactive substance is so small that there’s a chance an atom of it may, or may not, decay inside an hour.  If it does decay then it will set off the Geiger counter, which will trigger a hammer to break the vial of poison and kill the cat (poor kitty).  If it doesn’t decay, the vial will remain unbroken and the cat will stay alive (yay kitty).  According to the Copenhagen interpretation, as physical systems only have definite properties once observed and measured, the cat is both dead and alive in the box until it is opened and the deadness or aliveness of the cat is observed.  (Deadness and aliveness being genuine sciencey terms).

And there endeth my lesson in theoretical physics.  The full extent of my knowledge in which was gained from my physics A level (grade C), a quick skim of Wikipedia and binge-watching ‘The Big Bang Theory’.  Although tbh I’m not even sure the above is 100% accurate, but as I don’t think there are quantum scientists in my friendship group, I might get away with it.

But you’re probably asking ‘why on earth is Karen wittering on about quantum mechanics? Where are the gory stories about blood spattered boobs? That’s what we came here for!’.  Well, Schrodinger’s ‘dead or alive cat’ theory has been reduced by popular culture from a highly complex discussion about physical theorems to a basic meme about uncertainty and it came squarely to mind as I waited the three weeks after my re-excision surgery for the latest pathology results.

Because until you’re in the doctor’s office, until they’ve looked you square in the face and told you those results, then two possibilities are simultaneously alive and running riot in your head.  One – the re-excision surgery did what it was supposed to do and there are no cancerous cells left in your breast tissue.  Two – the repeat surgery did not succeed and there are still cancerous cells waiting to mutate and invade.  Like the unfortunate cat, until you have stepped over the threshold into that locked steel box, and the surgeon’s given you the equivalent of either the decaying atom or the non-decaying atom, there is the potential for good news and bad news, both possibilities exist at the same time.  The vial of poison will break.  Or will not break.  Like poor old puss, your hopes and wishes are simultaneously alive and dead.

Why, I hear you ask (you guys are asking a lot today), is the result of a cancer test any different to any other medical test? Well, of course, in truth it’s not. Every test result has the possibility of bringing relief or gloom.  But for the majority of healthy people undergoing tests to rule out medical conditions, there’s a good chance that the odds are going to be stacked in your favour. Serious health conditions that require urgent or continuing treatment affect, thank goodness, a fairly small proportion of the population.  But when you’ve had a cancer diagnosis (or that of any other chronic, serious or life-threatening condition) you’ve already fallen foul of the odds.  1 in 8 women will be diagnosed with breast cancer in their lifetime.  1 in 8. That’s 12.5% of women.  And I managed to be that 1 out of 8, stuck in that sucky 12.5% rather than in that wonderful, lucky 87.5%.  So you know you’ve failed in the luck of the draw once.  And when the cancer anxiety-worm gets in your brain, it starts whispering all sorts of things.  ‘Well, if you were stupid enough to be that 1 in 8, then you’re probably also stupid enough to be in the 43% of women with breast cancer for whom breast conserving surgery doesn’t work’*.

And thanks to that ear-worm, test results become a huge source of anxiety.  Waiting becomes painful, time slows to a crawl, a day feels like a week even when you’re able to distract yourself with the necessary minutae of everyday life, and in the special hell of a hospital waiting room an hour feels like a month of intense, stomach-churning agony.  In the cancer world, there’s even a word for the creeping panic that comes from waiting for test results, especially for the post-treatment mammograms that breast cancer survivors endure every year. That word is ‘scanxiety’.

So on Wednesday 19 September 2018  I was enduring severe ‘scanxiety’ as I waited to see my surgeon for my second post-op pathology results.  There had already been one aborted attempt to get these results the week before, when after yet another agony of waiting I saw my less-than-ideal surgeon only to be told they weren’t ready yet.  Deflated and distressed by the delay, it didn’t help that the my lovely ‘oh so switched on to how people feel’ surgeon, explained the delay by detailing how the tissue they cut out of you can be too ‘jellified’ to test properly and how they have to wait for it to ‘firm up’ before it can be sliced into proper slivers to examine.  Because what I needed right then was a mental image of my excised boob tissue turning from jelly to solid on a plate before being hacked into pieces.  Yep.

After that glorious encounter in my litany of surgeon faux-pas, the appointment on 19 September was always going to be high on the stress-o-meter.  And the news I was given didn’t alleviate any of that. Unfortunately, my surgeon said, the re-excision surgery had still failed to get clear margins.  There was still evidence of DCIS (cancerous cells currently contained within ducts in my breast) up to the margins of the tissue removed.  This meant that there was still DCIS present in the remaining breast tissue.  And that meant there was really only one option. A mastectomy.

I thought the bottom had fallen out of my world when I was given the original cancer diagnosis.  But because I had been reassured that minimal surgery and radiotherapy would probably be enough to treat the cancer, I had felt confident that I could tackle it head on. To jump from that to the position where I was going to lose all of an intimate part of my anatomy to a surgeon’s scalpel was more than my brain could deal with.  I fogged out the rest of the conversation and it was only when I moved to another room with a good friend by my side (mwah to her!) and my Breast Care Nurse, that I let the wall of emotion hit me.  Tears flooded out.  Angry, scared, confused, bewildered tears.  Six weeks ago I’d thought I’d be doing a quick ‘1-2-3’ (see U is for ‘understanding’) to the end of treatment but now it seemed to have turned into a ‘1-repeat 1-repeat much bigger 1’.  My BCN said she always felt sorry for women with DCIS who were suddenly confronted with a mastectomy, because they were often told that it was the ‘best kind of breast cancer to have’ and that it was treatable with simple surgery, but then had to readjust to the news that they’d actually need to lose a body part for that treatment to work.

And that is what’s next on the cards for me.  A major piece of surgery that will carve away a huge part (well, maybe not huge but at least a good handful) of the body that I’ve grown and grown into my entire life.  I can honestly tell you that now, over 7 weeks since I first heard that devastating news, I still haven’t processed it, understood it, dealt with it, accepted it. There’s a blog post to come about what a mastectomy is, what surgery and recovery looks like and what a woman’s options for reconstruction are but even now I know I won’t be able to explain or articulate how it feels to know that’s what my future holds.

* statistics from Breast Cancer Care: https://www.breastcancercare.org.uk/sites/default/files/files/breast-cancer-stats-sheet-february-2015.pdf