D is for ‘Decision’

/dɪˈsɪʒ(ə)n/

a conclusion or resolution reached after consideration.

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

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

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

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

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

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

I was only right about one of those things.

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

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

So that was the one thing I was right about.

The thing I was wrong about is more complicated.

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

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

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

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

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

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

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

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

And I think I just signed on the dotted line.

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