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 
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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.

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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?

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S is for ‘Schrödinger’s Cancer’

‘S’ is also for ‘scanxiety’.

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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

S is for ‘Surgery’. Part Two.

ˈsəːdʒ(ə)ri/

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

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So by the end of ‘S is for Surgery Part 1’ I’d cried, waited, been prodded and ignored, cried a bit more, been soothed by angel-like nurses, then been stabbed in the nipple.  As we rejoin my journey, after all the excitement of mammogram-wire-insertion-gate and radioactive-super-boob–injection, it was something of a relief to return to the grim corridor of day surgery to do a bit more waiting.

There was a brief interlude of excitement as I was whisked off by a nurse to get gowned up.  This basically consists of being shoved in a rather grotty locker room with a single plastic chair and one of those wheely curtain things, behind which you have to undress and clad yourself in this year’s Spring-Summer NHS surgical catwalk kit. This includes the NHS gown of humiliation (guaranteed to expose at least part of your anatomy to someone who isn’t supposed to see it), the compression socks of shame (slightly chunky calves? Don’t worry they’ll squish upwards and spill out over the top) and the disposable underpants of doom (the least said about these the better).  My own bag was pushed into a locker (locker no. 999, seemed appropriate) and then …. more waiting.

Waiting for something you don’t really want to happen is painful – you’re dreading your name being called out but the longer it isn’t, the worse the dread becomes. Nice Catch 22.  My personal Catch lasted nearly two hours, until at 1pm, after being at the hospital for 6 hours, my name was finally called.  My turn.

After a quick hug with my brother, while trying to stifle the tears of fear, the nurse walked me off to theatre.  None of the TV and film glamour of being wheeled off on a bed pushed by sympathetic porters.  Nope. NHS day surgery means it’s Shank’s pony, shod only in compression socks and non-slip slipper socks, all the way to the theatre.  They even make you carry your own pillow, to which your locker key has been pinned. The anally retentive part of my brain was shrieking ‘none of this seems remotely hygienic or sterile!’

A quick stroll and my surgeon was waiting just outside the theatre.  Nice, I thought, here to offer me words of reassurance and compassion before the scariest moment of my life.  Oh no, not him.  ‘Why are you late? You’re very late.  You’ve made my entire list for the day late now’.  What the chuffing hell?  I’ve been sitting in the day surgery corridor of gloom for the past two hours.  It’s not my f**king fault if someone else didn’t do their job properly and that’s no way to speak to your terrified patient.  I had decided at this point that I really didn’t like this man but as he was about to cut a massive hole in my chest cushion now didn’t seem like the appropriate time to tell him so.

It was on to the anaesthetist’s ante-room, and finally onto a trolley.  After lots of double-checking that they’d got the right person and the right boob, there was a bit of reassuring chat from the anaesthetist, a needle in the back of my hand and then …. nothing.  I didn’t even get to do the ‘count backwards from 10’ spiel.  Don’t the NHS watch any TV?  That always happens.  Or, as I heard from a friend, someone had been asked to say the name of some celebrity they fancied and hadn’t even had time to get to the end of ‘Benedict Cumberbatch’ before they were spark out.  I didn’t get any of that.  I just went from wide awake to out cold, and then, what felt like immediately, being groggy and waking up in recovery.  As someone who’d never had a general anaesthetic before I can say it is the weirdest feeling ever.  There’s no slow losing of consciousness, no dropping off to sleep, it’s just like a jump cut from one scene in the movie to the next, with no concept of what happened in between.  Although that’s probably for the best.

For me the waking up in recovery process was pretty reluctant.  I was in pain the moment I came round and refused to open my eyes and even consider thinking about waking up properly until they’d given me a couple more doses of pain killer.  Whatever shit it is they peddle in recovery, it’s pretty good shit.  But before long, I was dragging those eyelids open, realizing that the pain was dissipating and that although I felt a bit queasy (more meds please nurse) I was not doing too badly.   And as soon as they see that, you’re whisked back off upstairs to the day surgery ward (at least this time they wheel you up on a bed) and are being offered tea and a sandwich.  Markers of being ready to leave after day surgery are having drunk something, eaten something and peed something (preferably not the bed).

As I don’t drink caffeine and didn’t think the NHS catering would stretch to Rooibos, I asked for juice but they didn’t run to that either so I was offered lemon squash.  Yes please, and I don’t really want a sandwich but yes toast would be nice thank you very much.  Turns out I’m a difficult patient, at least in my catering choices.  By now my brother had joined me and we were just chatting, posing for the obligatory post-op selfie (don’t judge) and I was starting to feel so much better.  The lemon squash was weird though.  Didn’t taste right.  Tasted vomity I said.  It can’t be, my brother said, and took a sip.  No, that’s fine.  Weird, maybe my bad boob was somehow wired to my taste buds?   But not to worry, I had a polo mint and a quick walk around the room. This proved over-enthusiastic and I was immediately overcome by a wave of nausea again so it was back to bed. Apparently general anaesthetic and I don’t really agree.  Which, as we later discovered, explains the vomity lemon squash. It turns out that I’d been rather sick in recovery while initially waking up (something I have no recollection of whatsoever).  So it wasn’t the squash that was vomity, it was my mouth.  Lovely.

And then it was all over.  I was discharged and packed off home.  With a bag full of paracetomol and ibuprofen and some confusing mixed messages about wound care. According to surgeon-who-shall-not-be-named, it was ‘just be normal, shower as you usually would and if the dressings fall off it’s fine’.  According to nurse, it was ‘be careful, don’t get the dressing or wound too wet’.  I was soon to find out who was right.  Can you guess?

So home I headed.  With a slightly deflated boob which didn’t enjoy being bounced over speed bumps by our boy-racer taxi driver and which I was too scared to even look at.   After this sort of surgery, you’re dispatched with more than just physical scars to deal with.  Emotional ones need to be addressed too and I very quickly realized that recovery was going to be more than just a biological one.  What I didn’t realise as I left hospital that day was that my treatment wasn’t going to be quite as simple as the ‘1-2-3’ that the doctors had originally laid out (see U is for ‘Understanding’).

To cut a long story short, 10 days after that first surgery, I was told that although it had successfully removed the invasive tumour, they had not achieved ‘clear margins’.  This means that when they cut out the tumour, they also cut out an extra ‘margin’ of tissue around it.  The tissue is then tested and if the pathology results show no other cancer cells in this sample, then it is considered a success.  Unfortunately for me, my margins still included some of the DCIS (non-invasive, pre-cancer cells).  And unfortunately for me, that meant a second operation.  This came as a huge shock.  No-one had warned me that this was even a possibility.  I’d been reassured by my wonderful (not) surgeon that the lumpectomy would do the job, I’d be recovered in 6 weeks, ready for 3 weeks of radiotherapy and all done and dusted before Christmas.  That turned out to be far from the truth.

clear margins

So, only four weeks after my very first surgical procedure, I was back at the NHS day surgery for a second one.  Known as a re-excision, or cavity shave (which sounds vaguely pornographic), the intention is to take another margin of tissue around the original site and hope that this time the pathology tests reveal it to be entirely clear of cancer cells. It was a simpler process than the first op – no wire, no nipple injection, not much waiting.  I was in at 7.30am, on the operating table by 9am, back in the ward by 12 noon and heading home by 2pm.

But that’s still not the end of the story.  There was 3 weeks of waiting to face before I would find out if the re-excision had done the job or if more drastic steps would need to be taken. And that’s not 3 weeks of fun by any means.

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.