S is for ‘Surgery’. Part One.

ˈsəːdʒ(ə)ri/

the treatment of injuries or disorders of the body by incision or manipulation, especially with instruments.

two person doing surgery inside room
Not my actual surgery. Photo by Vidal Balielo Jr. on Pexels.com

Picture the scene.  It’s about 6am on a Friday morning in early August.  The sun is shining, the sky is already a divine shade of blue and it’s going to be another glorious, sweltering day in the record-breaking heatwave that has taken London by surprise this year.  And I’m sitting on the bathroom floor, still soaking wet from the shower.  And crying.

Crying because in an hour’s time I’m going to be in hospital for my cancer surgery. Crying because it’s just hit me that I’m about to say goodbye to the way that I’ve looked since I hit puberty (give or take an extra pound or two, ahem).  Crying because one very intimate part of my anatomy is soon going to be wearing two massive scars and missing a whole hunk of meat.  I’ll never look the same way again.  Every time I look in the mirror, I’m going to see the marks that cancer has left.  I’m crying because I’m sad about that.  And angry.  Angry with myself.  If I’m honest more people have touched, poked and prodded my poor breasts in the previous 8 weeks than has probably happened in the previous 8 years.  And I’m starting to think I’ve rather short-changed them.  That my fun bags haven’t had much fun recently.  That maybe I should have been prouder of them, more content with them, less worried that they were somehow not sexy enough, shapely enough, big enough, pert enough.  Maybe I should have put them out on display a bit more because after today I’m not sure I, let alone anyone else, is going to want to bother with my bosom.

But there’s not much time for self-pity in the churning conveyor belt meat machine that is NHS day surgery, so by 7.10am I’m checked in and sitting in the rather grim and grubby waiting … corridor at the hospital.  Not even a room, just an actual corridor.  I’d been warned in advance that it was going to be a long day, that despite the 7am start I’d probably not be leaving until 8 or 9pm. And I’d naively been expecting to be assigned a bed where I could read, watch Netflix or knit while waiting to be called down to theatre.  But nope. Stained seats in an over-crowded corridor is what I, and my brother who’d gallantly volunteered to be my companion, got.

We rapidly discovered that day surgery isn’t all sitting around, thumb-twiddling though.  Oh no, there were some exciting interactions to be had.  First up, a quick meeting with my surgeon who double-checked I understood what was going to happen (boob, scalpel, hole, no cancer any more, right?), made an inappropriate joke about the age of the female anaesthetist (there is a whole other blog post coming about the inappropriateness of my surgeon) and drew an arrow in marker pen on my shoulder pointing at the offending boob.  I’m not sure whether it’s reassuring or terrifying that doctors use such crude large signals to point them in the right direction.  Probably best not to think about that too hard.

While we’re with the surgeon, let’s do a quick side-bar about the actual surgery I was about to have. The process is called variously, a lumpectomy, a wide local excision (WLE) or a therapeutic mammoplasty.  My op was snappily titled ‘round block therapeutic mammoplasty’.  This all means that the breast is cut open by removing a doughnut shape piece of skin around the areola.  The malignant tumour and some surrounding tissue is taken out through this hole and then the remaining breast tissue is rearranged to fill the gap and, hopefully, keep the breast looking well, breast like.  The wound is stitched up, leaving the scar around the areola.  I guess it’s sort of like taking a bite out of a ring doughnut then pushing the two ends back together to make a slightly smaller doughnut.  Boob doughnut.  Simples.

boob drawing
Remember that drawing my surgeon did back on diagnosis day? Here it is again to demonstrate what a round block therapeutic mammoplasty looks like. The wavy line is a wire. See below for the delights of wire insertion.

After the surgeon came a fleeting meeting with the anaethetist who didn’t seem to have a clue what op I was having and rather crassly asked ‘so what’s wrong with you?’, only to respond with ‘oh’ when I told her breast cancer. Still not sure if that was a test to see if I was compos mentis or if she genuinely hadn’t the foggiest who she was about to drug into oblivion.  I’d been looking forward to meeting the anaesthetist because all the pre-op paperwork I’d read said that if you were anxious about the operation, they were the person to tell as they might be able to help.  So I duly told her I was f**king terrified.  ‘We don’t do pre-meds’ she replied.  Door closed.  Patient still f**king terrified.

By now the day surgery process was starting to make me feel like an insignificant, anonymous piece of meat being casually passed from hand to hand through an impassive uncaring system and, much as I respect the hard work and life-saving skills of the NHS, right then it just felt heartless and cold.  What happened next proved me both right and wrong.

Three hours after we’d arrived, I, with my bro in tow, was sent off down to the ultrasound unit for some pre-op prep.  In order for the surgeon to find the right spot in my lump of bap flesh, they were going to insert a guide wire leading right to the tumour (see drawing above).  Afterwards I’d be walking around with the wire sticking out of me like an aerial and I was half-wondering whether I’d be able to pick up Radio 4.

Up until now I’d just about been holding my shit together, despite having a tornado of butterflies in my stomach and constantly wanting to vomit out of sheer fear. But that shit-holding-togetherness didn’t last.  I’d had ultrasounds on my breast during diagnosis and they’d been uncomfortable but brief.  But this one seemed to be dragging on and soon the radiologist was quietly muttering things to his colleague which included words such as ‘cyst’ and ‘haemotoma’ that to the half-naked woman with breast cancer on the table are utterly terrifying.  These two men stood over me, talked over me, as one pushed the ultrasound baton harder and harder into my chest, making me feel both invisible and a massive nuisance at the same time.  Eventually they gave up.  Nope, they said, we can’t see the tumour.  It happens sometimes, it’s hidden behind something.  Might be a cyst, might be a haemotoma.  Shrug.  We’re not sure.  The wire will have to be put in using a mammogram.  Just nip outside and we’ll get it set up.

So bewildered, frightened and bruised I staggered back outside into the corridor and promptly had an epic tidal wave of tears meltdown onto my unsuspecting brother. I was still heavily tear-stained when I was ushered into the mammogram room, crowded with about five female members of staff.  As soon as they saw my bleary wet face, they became the five sweetest women I’d ever met. One took charge of me, grabbed my hand and reassured me that everything would be ok, that they’d look after me and I wasn’t to worry as this happened sometimes and it didn’t mean anything bad. I was found a chair, complete with comfy pillow and a blanket to keep my shaking form warm as they set up the mammogram machine.  As they all moved around me doing mysterious things with computers and plastic slides, that one woman crouched by my side, held my hand and kept checking I was ok.  She stayed there throughout and I have never been so grateful to another human being as I was right then.  These women, in that grinding NHS mill of endless patients, carved out the time and found the compassion and humanity to offer me the comfort and reassurance I so desperately needed right then.

Once the mammogram was set up, my offending boob in place and sufficiently flattened, the radiologist returned and started the wire insertion.  The lovely woman holding my hand told me to shut my eyes and keep them shut until she said it was ok to open them again.  Chatting to me about anything she could think of to distract me from the tugging and pulling going on, she gripped my hand and I gripped back.  What felt like an age later, but was probably no more than five minutes, it was done.  The wire had been inserted and was taped to my shoulder.   I stupidly opened my eyes.  And promptly shut them again when I saw my blood-soaked boob.  My hand-holding saviour gently chided me for not listening to her instructions, wiped me clean, dressed the wound and gave me permission to open my eyes again.  God bless the women in that mammogram room.

So after that trauma, I was hardened to the next bit.  The bit I’d originally been dreading the most.  The nipple injection.  Yep, you read that right.  An injection. In your nipple.  They keep this bit quiet right up until the last moment, probably because it would send most women screaming from the room.  Jab a needle into my nip, I don’t think so matey. There is a scientific reason behind the torture as the injection is used for the Sentinel Node Biopsy during surgery. One of the biggest concerns about breast cancer, or any cancer, is that the cancer cells have moved into the lymph nodes.  If they have there’s then the possibility it will spread elsewhere in your body through the lymphatic system.  Which no-one wants.  So even if ultrasounds on the nodes in your breast and armpit show no obvious cancer involvement in those nodes (as in my case) the surgeon will still remove the sentinel lymph node (i.e., the first few nodes that a tumour might reach) to have it biopsied and checked. And in order to find that node they have to light it up.  So off you pop to the ‘nuclear medicine’ department, step over the scary black and yellow tape marking the radioactive area only patients can enter, take a seat in a massive reclining chair and a woman sticks a needle in your nip. Wham, bam, injected with radioactive liquid, thank you ma’am.

That was it, done.  Probably the best part of my day to be honest.  Painless, quick and not a mark left on me.  Later during the operation itself, the surgeon also adds a coloured dye to drain through the lymph nodes with the radioactive liquid and show up those sentinels.  The dye is blue.  It stains. So after surgery you’re not only bruised, sore and exhausted but you also have a massive Smurf boob.  And blue wee.  For days.  Then eventually green poop.  I still have small patches of blue boob now, 10 weeks after surgery.  Breast cancer, the gift that keeps on giving.

But I’ve already given you too much.  Probably enough to fuel nightmares for weeks.  So that’s where I’m going to leave you for now folks, as I’m seated back in the grim day surgery corridor, waiting.  With my radioactive, wired-for-sound boob.

There are more delights to come, so stay tuned for ‘S is for Surgery Part 2’ with its promises of natty NHS attire, reluctant recovery and vomity lemon squash.

U is for ‘understanding’

ʌndəˈstandɪŋ/

1) the ability to understand something; comprehension.

2) sympathetic awareness or tolerance.

white-blood-cell-cell-blood-cell-blood-45239-e1538323234107.jpeg
Some sciencey looking cells. Photo by Pixabay on Pexels.com

Do you know what cancer is?  I mean really is.  Not just ‘that awful fucking disease that hurts people you love’.  But what it actually does to the human body at a cellular level?  What it is that makes cells suddenly start doing something they aren’t supposed to do? No? Well, you’re not alone.  Yes? Then I’m guessing you’ve either been through the cancer mill yourself or been beside someone you care about as they have, and for both of which I’m truly sorry.  You may, if you wish, be excused from class.

One of the most difficult things about a cancer diagnosis is understanding what that really means.  Most of us don’t have medical degrees or extensive scientific knowledge of the biology and chemistry that drives cancer so it’s hard to grasp what’s happening inside your body that suddenly means you’re facing a life-threatening illness. It’s especially hard to comprehend that there are cellular changes taking place inside you that need rapid and drastic treatment when you’ve had zero symptoms prior to the diagnosis and, apart from the occasional middle-aged ache and pain, you feel fit and well.  I mean you’re not Usain Bolt, but you’re still able to get up a few flights of stairs without your chest exploding.

Some people when they’re told they have cancer want to know everything.  Read every book they can, Google every word on their doctor’s letters, research the hell out of it because, for them, it’s the better the devil you know.  For some there’s comfort to be found in knowing the mechanics of how their cells are mutating and changing, in knowing the latest thinking on cutting edge treatments and interventions.  Some want to be entirely on-the-ball so they can actively participate in the decision-making process on how their cancer is tackled by their medical team.

But not everyone wants to know the ins and outs of their diagnosis.  Too much research, too much time diving into the Google blackhole can be terrifying so some people prefer to rely on the expertise of the medical staff looking after them.  To be guided by the professionals as to what needs to happen, and to let those pros doll out as little or as much information as they think the patient needs to deal with their situation or make a decision about their treatment.

As ever, and much like my taste in music and pop culture, I’m standing squarely in the middle of the road.   I’ve, for the most part, resisted the lure of Google, knowing that it can steer you down dark and depressing paths, and have tried to understand my disease based on the information that the doctors and nurses have so far given me.  This has mostly been in the form of booklets and pamphlets from a charity called Breast Cancer Care (see my note at the bottom of this page).  These leaflets, while overwhelming in number, have proved a lifeline – a source of clear, concise information and explanation.  Not too detailed, graphic or complex but enough for me to grasp the basics of what is happening and understand some of the terminology that gets thrown around in the cancer world.

And so as we head into October and Breast Cancer Awareness Month, I thought you might not mind a quick lesson in what sort of breast cancer I have so you can more easily follow the journey that this crappy disease is going to take me on.  Because maybe by understanding what cancer is, you’ll understand what cancer does, to the people dealing with it.  So get comfortable, I’ll try not to get too sciencey but there might be a quiz at the end (there’s not a quiz at the end):

What is Cancer?

Cancer starts in cells.  Not rooms to restrain prisoners but biological cells – think of them as the little Lego brick building blocks that make up our tissue and organs.  These cells normally divide to make new cells in a nice, controlled, orderly fashion (now if only Lego bricks did that!) and this is how our bodies heal themselves and grown.  But sometimes this orderly cell division goes haywire and the cell becomes weird, abnormal but keeps dividing and makes even more abnormal cells (Daily Mail headline – Lego bricks gone bad!).  Eventually these cells form lumps or tumours.  Not something you want to step on with bare feet.

A more detailed, professional and less Lego-y explanation of what cancer is can be found here:  https://www.cancerresearchuk.org/about-cancer/what-is-cancer

Cancer can occur almost anywhere in the body (there are 200 types apparently.  Eeek, that’s scary).  But mine is boob cancer.

Primary Breast Cancer

I have primary breast cancer.  This means this is a breast cancer that has not spread outside the breast or the glands, known as lymph nodes, which are under the arm. Breast cancer can be both invasive and non-invasive.  I, lucky son of a gun that I am, have both.

Non-invasive Breast Cancer – Ductal Carcinoma in Situ (DCIS)

If there’s ever a ‘good’ type of breast cancer to have (which there really, really isn’t, so please don’t EVER tell anyone they are ‘lucky’ to have it, and actually let’s just call this the ‘slightly less evil’ type of breast cancer) it’s this one.

Non-invasive simply means it hasn’t yet developed the ability to spread (either inside the boob, or elsewhere in the body) and DCIS is recognised as an early form of breast cancer, which accounts for about 12% of all breast cancers.  My original, now ex-surgeon (more later on why he’s now my ex-surgeon) liked to call DCIS ‘pre-cancer’.  My Breast Care Nurse dismissed that label as rubbish (she’s pretty kick-ass, we like her).

But DCIS is sometimes known as ‘pre-invasive cancer’. This is simply because the cancer cells are changing and growing within the milk ducts (ie, in situ) and haven’t yet changed to cancer cells which can spread.  But that doesn’t mean they can’t or won’t and if DCIS isn’t treated, it may well develop into invasive cancer.  Like I said, there’s no ‘good’ cancer and a diagnosis of DCIS can mean just as heavyweight treatment as invasive cancer, including a mastectomy. On the plus side, DCIS, because it is confined to the ducts, has a very good prognosis.

DCIS is graded as low, medium and high.  Low means the cancer cells are slow growing, high means fast-growing.  Hitting the cancer jackpot again, my DCIS was graded as high.  Now is not the time to start excelling in tests Karen.

DCIS
Here’s a nice picture of some milk ducts from the Breast Cancer Care booklet ‘Ductal Carcinoma in Situ’.  For my American friends, these are not to be confused with Mild Duds.

Invasive Ductal Breast Cancer (of no special type)

Alongside the DCIS, I also have invasive ductal cancer, which simply means the cancer cells started in the milk ducts but made a break for it (the only bit of me that has ever wanted to rebel.  Shit choice of subversion Karen) and have now spread to the surrounding breast tissue.  IDBC gets the rather derogatory ‘of no special type’ label simply because the cancer cells have no distinctive features that class them as a particular type.  It’s almost enough to make you feel sorry for them. Almost.  Well, maybe not.  F**k those feature-less cancer cells.

There are lots of other types of invasive breast cancer (lobular, inflammatory, Paget’s disease and the rarer tubular, cribriform, medullary, papillary etc, which start to sound like spells from Harry Potter or, put together, a song from Mary Poppins).

Invasive breast cancer also comes in grades (1 to 3) and, luckily for me, I flunked a bit this time and got a 2.

Hormone Receptors and Protein

Breast cells normally and naturally contain proteins known as hormone receptors which receive messages from hormones in the body and react by telling the breast cells what to do.  Think of them like Dads when they’re in charge of the kids. They get phonecalls from mums reminding them that the kids have got piano lessons, then the Dads tell the kids to go to piano class.  (Apologies to all efficient and organised dads everywhere, sometimes a lazy stereotype is the only way to go).

Sometimes the abnormal breast cancer cells contain receptors that respond to the hormones oestrogen and progesterone and can stimulate the breast cancer to grow.  This is definitely not a good thing.  All women with invasive breast cancer will be tested for these hormone receptors.  If the results are positive it is known as oestrogen receptor positive breast cancer, normally appearing as ER+ (or ER+/PR+ or ER+/PR-), and the likelihood is that once active treatment of the cancer (in the form of surgery/chemo/radiotherapy) has finished then a long course of hormone therapy will also be recommended.  Deciding what HT will be used is incredibly complex and depends on a wide range of factors but for me, the most likely outcome will be 5 years taking Tamoxifen. There will undoubtedly more on that to follow.

Some breast cancer cells also have a higher than normal level of a protein called HER2 (human epidermal growth factor receptor 2 – which sounds like something Charlie Brooker made up on ‘Black Mirror’) on their surface and which stimulates those bastard cells to grow.  Again, all invasive breast cancers are tested for this protein when a biopsy is done and if the result is positive chemotherapy is normally recommended.

Luckily, this is another test that I flunked as my cancer was HER2 negative. Phew.

Treatment

So after all that sciencey shit, what’s next? As you can see, breast cancer can vary in so many different factors, it’s not surprising that how it is treated can also vary in a myriad of different ways.

For me, the treatment path was laid out as:

  1. Surgery – a lumpectomy (or wide local excision) to remove the IDBC tumour and the ducts where DCIS was present;
  2. Radiotherapy – targeted high energy x-rays which aim to destroy any cancer cells that might remain in the breast are after surgery.
  3. Hormone therapy – Tamoxifen for 5 years

But nothing in the magical world of cancer is fixed and the sands shift under your feet all the time as tests, scans and biopsies reveal more and more detail about your own personal tumour and rebellious, mutating cells.

So treating my cancer might not be as easy as 1 – 2 – 3.

Next up – S is for Surgery.  Roll up, roll up for the delights of wire insertion, nipple injections and vomity lemon squash.

 

The image and some of the information on this page has been borrowed from the excellent website breastcancercare.org.uk. Breast Cancer Care is the only specialist UK-wide charity providing support for anyone affected by breast cancer.  Their website and free pamphlets are an amazing resource for anyone facing breast cancer and their online forum is a lifeline of support for patients, where anyone can openly discuss their diagnosis or treatment and mine a wealth of knowledge and lived cancer experience. If you feel so inclined to make a small donation to help them continue their superb work, you can do so here: www.breastcancercare.org.uk/donate

T is for ‘Tsunami’

tsuːˈnɑːmi/
an arrival or occurrence of something in overwhelming quantities or amounts.
photography of barrel wave
Photo by Emiliano Arano on Pexels.com

As an English grad I love a good metaphor and, at risk of mixing mine, (remember that one about life’s journey and the cancer sinkhole?), being given a cancer diagnosis is a bit like being hit by a tsunami.

First, when you’re sitting in a doctor’s office and hear the words ‘you have cancer’, you find yourself in a strange void.  It’s like standing on a beach and realizing that the tide has suddenly gone a peculiarly long way out and you’re on this vast expanse of empty sand wondering where everyone else and all the water has gone.  That cliché that you hear only the ‘you have cancer’ and nothing else that follows isn’t a cliché.  It’s true. Your brain freezes and refuses to register or process what is said next.  Your consultant gives you surgical details (mine even drew that lovely sketch of the hole he was going to cut in my boob), the Breast Cancer Nurse gives you tissues and a resource pack but you’re still just stuck on that beach staring out at the sand, where someone’s written ‘cancer’ in big letters, and wondering where the water’s gone.

Then, after a while, on the horizon, maybe when you’re back at home, or on the bus, or in the hospital car park, you see a wall.  It’s getting bigger.  It’s moving fast and it’s coming straight for you.  The water is coming back and there’s no high ground to run to.  That tsunami has your name on it and it’s full of cancer emotions, rushing up to overwhelm you.

Because it’s probably emotions that will hit you first.  Of course everyone’s reaction to a cancer diagnosis is going to be different but for me the first tsunami wave was definitely fear.  Fear of the unknown (because the majority of people will know nothing concrete about cancer until they’re made to face it), fear of the surgery that’s needed, fear of the treatment paths that might be ahead (especially chemotherapy and all it entails, the sickness, the hair loss, the exhaustion), fear that the cancer might already have spread and, of course, the biggie, fear that the malignant lump in my breast was going to kill me way before I was ready to say goodbye (I still want to lick chocolate off a naked Tom Hiddleston goddamit).

And just to make sure this tsunami is a swirling, seething mass of cold, wet,  uncomfortable emotion, you’re probably going to get angry too.  Angry about why you should be so fucking unlucky to be one of those 1 in 8 women who will get breast cancer in their lifetime (1 in 8? Let’s get fucking angry about that); angry about all the things this means you’re not going to be able to do (Want to go on holiday? Nope, you need surgery and then after that travel insurance might be prohibitively expensive.  Want to get a new job? See how that goes when you’re so exhausted you can’t move); angry about … well, anything. And everything.  You’re just very bloody angry.

Don’t forget to add regret (‘what did I do wrong? Did I eat the wrong things? Not do enough exercise? Dye my hair too much? Put my cellphone in my bra one too many times?’) and guilt (‘how is this going to make my family feel? Will they be able to cope with me being ill? How many times can I asked loved ones and friends to help me out before it’s one too many times?’) and probably a good dollop of totally trashed self-confidence (‘who’s going to want me now I’m damaged goods? Not that anyone wanted me before but Benedict Cumberbatch is almost definitely off my list of possible conquests now’).

And if it’s not enough that the tsunami rains down a shitload of unwanted emotions on your head, you are overwhelmed by wave after wave of information too.  Even if you steer clear of the demon Google (the enemy of cancer patients everywhere) you are bombarded with unusual and definitely not user-friendly medical information at every turn.  Everyone uses an alien language, full of acronyms, jargon and data, that you have to very quickly learn and digest if you want to find any kind of purchase on the shifting sands that this tsunami is creating under your feet.  And there’s no Rosetta Stone pack for cancer-speak. DCIS, IDC, ER/PR/HER2, BRCA1, WLE, SNB, MX, OMFG WTF does it all mean?

booklets
The photo above shows just a small selection of the information booklets that landed on my doorstep one glorious morning

And no-one can you a straight answer about anything.  As everyone’s cancer is as unique as they are there’s no ‘one size fits all’ treatment plan, no ‘we always do this, then this and we’ll get you to here’ because every next move depends on test results, biopsies, pathology reports, histology reports, scans that no-one can predict and no-one is willing to take a punt on.  It’s like realizing you’re going to have to cross that huge, wide, frothing powerful river in front of you but you’re only ever going to see one stepping stone at a time and they’ll pop up randomly and maybe only for the briefest of moments. (See, I told you I liked mixing my metaphors).

For me, it’s this level of uncertainty that is the hardest thing of all to deal with in the midst of the cancer tsunami.  It washes over your old life, hurling your certainties around like they were flotsam trash and leaving everything in disarray.  Whereas once you knew that today you would be working, tomorrow you would have dinner with friends, next week you were going to the theatre and in the summer you were off on your holidays, now you can’t plan beyond tomorrow because that next test result, that next hospital appointment might mean a shift in those stepping stones and a shift in your treatment plan that will trash your diary for months.  As a control freak, an an organizer by nature, always looking for the next fun thing to plan with friends, the horror of not knowing where the next stepping stone might emerge from the water is the scariest thing of all.

Post-that-initial-tsunami, your new cancer life is also littered with things you didn’t want and shouldn’t be there (just like that classic tsunami photo of a boat in the backyard of someone who lives miles from the coast) but this boat is endless paperwork (appointment letters, test results, forms to fill in), surgical scars, hormone therapy tablets (and their side effects) for the next five years, ever present anxieties about those small aches and pains that every aging body has but now might presage something awful.

And the truth is that while the waves do recede a little as you digest the news and learn to adapt (it’s surprising how quickly cancer becomes the new normal), they never go away completely.  You can often feel them lapping round your feet even at the most mundane of moments, in a supermarket, on the tube, peeling the veg for tonight’s dinner, curled up on the sofa watching crap TV, and they can gather force and overwhelm you at any time. That small annoyance that wouldn’t have phased you pre-cancer suddenly has you sobbing hysterically as if the world has come to an end.  It’s like someone has peeled off your emotional skin and left your nerves exposed, raw and open, set screaming and jangling by even the gentlest of breezes.

For the luckiest of us that survive the cancer tsunami, clinging on to some tree for dear life until the wave passes over us and rushes on (fingers crossed I’ll be in that number), there will always be some devastation left in it’s wake. We might rebuild the house, put that boat back in the sea where it should be, sweep the mud from the garden but please pardon us if sometimes we look and act overwhelmed as I think we’ll always be finding some of the sand in our shoes.

‘D’ is for ‘diagnosis’. Part Two

/ˌdʌɪəɡˈnəʊsɪs/ 1. the identification of the nature of an illness or other problem by examination of the symptoms.

‘D’ is also for ‘disbelief’, ‘delusion’, ‘denial

 

So you left me standing in a hospital corridor, half dressed and scared, clutching a leaflet about a new breast biopsy and the remnants of my rapidly departing dignity.

But in truth, even then I went home assuming that all the mammograms, ultrasounds and biopsies were pretty standard and that this was all necessary just to rule out the remote possibility of cancer.  I was still clinging to the idea that this was ‘nothing to worry about’. I still can’t decide whether this was active self-delusion, real hope or just naivety.

The leaflet that had been shoved into my hand so unceremoniously described the biopsy that I would be facing in a week’s time.  My previous core biopsy had been a simple affair – quick jab of local anaesthetic (“sharp scratch coming up” – are all doctors/nurses taught this phrase at medical school?), some pressure and that sound of the staple gun, then a plaster and off I went.  The worst of it all had been the instructions not to shower for three days.

This new biopsy was going to be a bit more complex and long-winded but reading the leaflet it also seemed bizarre and, quite frankly, ridiculous.  This biopsy is called a ‘mammotome’ or an ‘x-ray guided breast biopsy’ and it basically consists of the patient stripping off (top only, thank god) and lying face down on a table with the offending boob popping through a hole specially cut in the bed.  Said boob is then squashed between mammogram plates so the radiologist can find the right spot, then that radiologist disappears under the table, cuts a small hole in the breast and uses a vacuum to suck out a tissue sample. Like I said, ridiculous right? Boob shaped holes in tables? Radiologists scrabbling around on the floor?  Vacuums sucking out boob flesh? I spent the week before the test telling friends about it and laughing about how stupid it all sounded.

Mammotome image

In truth, it really wasn’t something to laugh about.  The first thing is to say that mammograms hurt.  As women we are frequently told that they don’t hurt, that they’re just ‘uncomfortable’.  Well I’m sorry but any process that involves squashing one of your most sensitive fleshy bits very tightly between two metal plates hurts.  Ok, not burning-in-the-fiery-pits-of-hell hurt.  Not kidney stone hurt (believe me those f**kers kill ya).  But probably on that brilliant painting scale of pain, at least a Van Gogh (see below).  Believe me if men had to regularly have their testicles squeezed between plates, there’d be no ‘it’s just uncomfortable’, it’d be pain pills and dark rooms to lie down in afterwards all the way.

pain scale

The blessing is that mammograms usually only take a few seconds.  Squish, squash, you’re done.  But with a mammotome, you’re on that table, face down, boob through a hole and splatted between glass like a fly on a windscreen for at least 30 mins.  They do give you a local anaesthetic (“sharp scratch”) so they can cut into you and hoover up that tissue but for me it wasn’t quite enough and the nurse’s attempt to converse about the weather and my job didn’t distract from 30 mins of Van Gogh pain and sheer grinding fear.  Then once the radiologist has sucked up all the biopsy material she needs, popped in a piece of titanium (yep, they whack a bit of titanium in your breast just so they ‘can find the spot again if we need to’) and crawled out from under the table, you’re left there still squashed between glass for another 10 minutes to stop the bleeding.  Thank god, your boob is still under the table as the bleeding I did not need to see.

Finally, you’re allowed to turn over, then the nurse says she just has to push on your sore breast for another 10 minutes to prevent bruising.  So now you’re face up, half naked and making awkward small talk with someone trying to push your boob inside your chest cavity.  Then it’s over.  Except it’s not.  Because despite all of the above you still have to have another mammogram to make sure the marker is in place.  Insult. Injury.  I practically had to roll my poor flattened breast up like a rug to get it back into my bra.

And then what? A week of waiting, wondering, worrying (there will be a “’W’ for …” blog post, believe me) before returning to the consultant for the final test results.  From somewhere I’d got the vague idea that if they were going to deliver bad news then I’d be asked to bring someone with me so I had a friend on stand by, but when that call didn’t come I blithely went to the appointment on my own, still in the land of ‘nothing to worry about’.

How wrong was I? The consultant who so confidently had told me two weeks ago that the ‘one thing we know is that you don’t have cancer’ was suddenly saying ‘unfortunately you do have cancer’.  Just in the right breast, not the left breast.  (That lump in the left breast? A benign fibroadenoma apparently.  Nothing to worry about).

And now he’s scribbling a drawing of how he’s going to cut a hole in my breast (he’s going to cut a f**king hole in my breast!), telling me I’ll need radiotherapy and packing me off to the ‘special room’ to sit with the breast care nurse who does her best to make a bit more sense of my situation.  But I’m listening to her through a haze, with only words like ‘invasive’ and ‘chemotherapy’ really piercing the weird fug I’m enveloped in. Then I’m crying, given a tissue and a ‘Breast Cancer Resource Pack’ and suddenly I’m outside.  I’m in the car park, phoning my brother (aware I’m about to put a small crimp in his Spanish summer holiday) and as soon as he says ‘hello’, the floodgates open and I’m standing in a hospital car park sobbing with sheer terror.

boob drawing

And that’s how I got my diagnosis.   That MRI I had for stomach pains led to the entirely accidental discovery of breast cancer. I had no lumps that could be felt, no physical symptoms.  If I hadn’t have left my job after 13 years, if I hadn’t joined Channel 4, if I hadn’t decided to make use of the private health care they offered, if I hadn’t pestered my gastro consultant into booking an MRI then the chances are the cancer would not have been found for years to come.  By which time my diagnosis, my treatment, my prognosis could have been very different.

My future has changed but there’s a good chance that Channel 4 really did save my life.

Official diagnosis: Right breast 12 mm Invasive Ductal Cancer (grade 2), admixed with Ductal Carcinoma in Situ (high grade).  Estrogen and progesterone positive (ER8/PR2) and HER2 negative.  

‘D’ is for ‘diagnosis’. Part One.

/ˌdʌɪəɡˈnəʊsɪs/
1.  the identification of the nature of an illness or other problem by examination of the symptoms.

‘D’ is also for ‘disbelief’, ‘delusion’, ‘denial’.

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Photo by Negative Space on Pexels.com

Buckle up, this might be a long ‘un and full of detail as I get you up to speed. But it starts with a simple fact.

Channel 4 saved my life.  Probably.  Hopefully.

I left a job I loved after 13 years service (big trauma, long story, another time) and joined Channel 4 in the summer of 2017.  By then I’d been having stomach problems for years but they were routinely dismissed by GPs and NHS consultants as ‘just IBS’.  So I decided to make the most of C4’s private healthcare plan and get myself checked out properly.  Cue a string of embarrassingly invasive tests (you do not want to know where I’ve been probed) that found nothing beyond the gallstones and kidney stones I already knew about.  (Question for later, why am I full of stones? I’m surprised I don’t rattle when I walk). But in my final appointment with the gastro specialist, he reviewed an MRI done on my upper abdomen and casually remarked that it seemed to show a lump in the lower part of my left breast. ‘Probably nothing to worry about’ he said, ‘but maybe get it checked out’.  Doctors.  Blasé as f**k about everything.

Now I’d had a cancer scare when I was at uni, with a lump in my left breast that was quickly diagnosed as benign, so I assumed it was probably that old nobbly bit of boob resurfacing.  Plus on self-exam I couldn’t even feel anything like a lump so I wasn’t worried.  But I dutifully made an appointment with my GP who, although she couldn’t feel this mysterious lump either and assured me it would be ‘nothing to worry about’ (uncanny how often doctors use that phrase), referred me to the ‘one stop shop’ breast clinic at my local hospital.

And I went to that clinic appointment totally convinced I would be told it all really was ‘nothing to worry about’.   Normally I’m a bit of a catastrophizer and can make a malignant mountain out of any old mole(hill) but for some reason, on this occasion I was convinced all would be fine.  I knew many women of my age who’d been down the ‘found a lump, got it checked, all A OK’ route and I knew the odds were likely to be in my favour (although we all know how that worked out for Katniss).  So waiting at the breast clinic I was calm and curious, probably patronizingly so, as I watched turbaned, tufty and anxious-looking women arriving for their appointments and thought ‘poor them’.

My first encounter with the consultant was brief.  A quick grope (all chaperoned by a nurse, of course), another comment that no lump could be felt then packed off for a mammogram and an ultrasound which also turned into a core biopsy.  The latter rather took me by surprise but I was assured it was ‘standard practice’ and it was painless and speedy even if it did sound like someone was stapling  a huge wad of paper to your boob with one of those massive staple guns your primary school teacher had.

Pretty quickly I was back in the consultant’s office and being told ‘well, the one thing we know is that you don’t have cancer’.  Phew, I thought, all as I expected, I thought, nothing to worry about.  They’d still have to wait for the results of the biopsy of course to see if the lump was ‘pre-cancer’ (ahem, what?  What the blip is pre-cancer?) but I left the hospital reassured and relieved.

That eggshell-thin veneer of self-assurance suffered a few cracks a couple of days later when I was told I needed to return to the hospital for a further mammogram. Of course, my super-powered catastrophizing brain now overwhelmed my ‘it’s nothing to worry about’ facade and went into overdrive about why this was necessary.   The secretary’s answer to exactly that question was ‘we need more images’ which did nothing to reassure or explain.  I think hospital secretaries take lessons in obfuscation.

The paranoia and confusion snowballed when I turned up for the appointment and learnt that it was now my right breast that they wanted to image.  Right breast? Wasn’t it the left breast that had the lump? Why were they suddenly interested in the right one? Why was my left breast no longer of interest? Would it be offended? I tried to reassure myself that this was just a ‘compare and contrast’ exercise (sounding like the 70s-born old-school GCSE kid that I am) but during the ultrasound the radiologist muttered something about ‘microcalcifications’ and my anxiety dial shot right up to the max.  Mostly because I had no idea what microcalcifications were and no-one bothered to explain.

After the appointment I was trying to untangle myself from those ridiculous and impossible-to-do-up-without-exposing-some-random-naked-part-of-your-anatomy hospital gowns when the radiologist called my name again.   I rushed out into the corridor, half dressed and totally anxious, where she met me and blurted out ‘we need to do another biopsy’ before shoving a leaflet about the process into my hand, turning tail and scurrying away.  No warning, no explanation, no privacy, no reassurance.

I stood in the hospital corridor, clutching my clothes to my half-dressed chest and trying (not altogether successfully) not to cry.

Stay tuned for part 2 which includes tables with boob-holes cut in them, surgeons rapidly back-tracking and more random public crying.

Where to Start?

Life’s a journey, right?

Once you’ve passed the playful childhood years and those tricky teenage traumas, then the ideal adult life is like a gentle hike through the countryside.  You’ve got a map on your phone of how to get from A to your perfect B and there’s a nice clear path to follow. Not quite the Yellow Brick Road but one of those public footpaths with mile markers and signposts to point you cheerfully in the right direction.

This path takes you on a pleasant stroll through emerald fields sparkling with rainbow-hued wild flowers.  Or maybe along a stunning cliff edge with spectacular views of coastal crags and azure seas.  Sometimes there’s a bit of a slog up a hill that leaves you panting for breath, but the panorama at the top makes the red face and aching lungs worthwhile and coasting down the other side with the wind in your face is a joy.  Sometimes the path gets a bit clogged up with muddy puddles or brambles and you have to pick your way through with a bit of care (or maybe you stomp right through those puddles because you packed your wellies and who doesn’t love puddle stomping?).

And sometimes you reach a fork in the road and have to make a choice – left or right? There’s still a clear path ahead either way but the wrong choice and you might be skirting a rundown industrial estate, wind blown with litter and dark corners, that you rush through at speed, hoping to find the correct path back to go those green valleys.  Or you might even find yourself heading for a completely new destination, that old path to point B not seeming quite so perfect after all (were those rain clouds you spotted ahead?) while point C offers fresh promise.  But either way there’s a path.  It’s there under your feet and stretching out in front of you all the way to the horizon. All you have to do is keep walking, trusting that the path, even when it’s getting dark and trees throw creepy monster shadows on the ground, will get you where you want to go.

And now imagine that someone says five words to you and that path vanishes.  It crumbles away in front of you just as you’re about to take your next step.    Solid ground breaks up and falls away. A massive sinkhole opens up and ahead of you is nothing but empty air.  Your path, and your horizon, have vanished.

That’s what it’s like when someone says the words ‘unfortunately you do have cancer’.

I’ve started this blog to try and help me find my path again.  I’ve still got my hiking boots on and that map is still on my phone but the way ahead is frightening, confusing, and uncertain and the people around me are speaking a language I don’t yet understand.

I plan to take it one letter at a time although, to misquote Eric Morecambe, I’ll use all the right letters but not necessarily in the right order.  This will be no-holds-barred and there will be lots of discussion of my boobs so if you’re squeamish or might get embarrassed by knowing so much about my anatomy best step away now.

For those who stick around, I’ll be grateful for your company as I go path-finding.