THE RECONSTRUCTION


Alice-May Purkiss on Mastectomy + Reconstruction.


This was the first time I cried when I came around from anaesthetic. Hot, uncontrollable tears swelled over my cheeks as I began to grasp at my surroundings and figure out where I was and the theatre recovery room came into focus. I felt groggy and sick and scared and tired. But mostly I felt the tears come. It was my eighth surgery in two years, and the first time I’d woken up with any semblance of two breasts for over 22 months. I cried, not because of the pain – those tears would follow as the drugs wore off – but because it was beginning to feel like the end of this whole process.

I was diagnosed with breast cancer when I was 26 years old. When I found the lump in my right breast, I never imagined it would be cancer. Cancer was something that happened to other people. Older people. Unlucky people who felt so incredibly distant from the young woman I was. But it happened to me. Cancer chose me and I don’t know why. I’ll probably never know why, but them’s the breaks.

I remember sitting in front of my surgeon the first time I met him, discussing my options. I was in a pretty unique position. The location of my tumour meant that I had a choice as to how we proceeded. He told me that if he had two versions of me standing in front of him, and he gave one a mastectomy, and one a lumpectomy, the results would be much the same, but the Alice who had a mastectomy stood less chance of the aggressive triple negative (non-hormone responsive) cancer that had made it’s home in my body coming back. From where I was sitting, there was no choice. When faced with reducing the chances of my (already likely to recur) cancer recurring, a nipple-sparing mastectomy with immediate reconstruction was the only option.

In a whirlwind of moments, my surgery was scheduled for 3rd August 2015. Just a matter of weeks after diagnosis. My mastectomy was to become my first ever surgery. The first time I’d ever had an anaesthetic. Way to go in at the deep-end, right?

I don’t think I’ve ever been as scared as I was on the morning of my mastectomy. My heart relocated to my stomach as I was marked up, a massive arrow drawn on the right hand side of my chest to indicate which breast was the troublesome one. I felt my breath becoming tight and anxious as a cannula was inserted into my veins. One of the nurses, sensing my vulnerability took a moment to squeeze my hand. That squeeze was like a life raft being thrown to me as I was drowning. I wonder how I would have felt if I’d known that this was the first in what would very quickly become a long series of events.

As you can probably guess by my admission that I’ve had eight surgeries in two years, my surgical experience has been far from straightforward. A few weeks after my mastectomy I tried to make it back into the office and regain some semblance of normality in one of the most turbulent times of my life, but my body had other ideas. The skin around my scar was refusing to heal. I stepped off the busy commuter train at 9am on a bustling London morning and pulled my coat around me and suddenly realised it was damp. My dress was soaked. Sodden. Serous fluid had begun to leak through the surgical scar left behind from my mastectomy as it struggled to hold together. And the thing about when you’ve had a breast reconstruction is that if stuff is coming out of your scar, stuff can get in, meaning your risk of infection is heightened. Cue a frantic call to my (incredible) breast care nurse and an admission to the day surgery unit at my hospital, for the first of several attempts to save the implant that had replaced the tumour and the other tissue in my breast.

I call this section of my life The Ballad of the Exploding Breast, but truth be told, my memory of this time is pretty sketchy. Events merge into one another and there are some significant blank spots where I’ve clearly blacked events out in some sort of attempt at self preservation. There were four times when I was rushed into surgery to try and restitch the scar, force the skin to heal. I had a new implant inserted every time. We tried smaller silicone implants. An expander implant (which is basically a pocket filled with saline via a port to increase volume) at 50% filled. Then with nothing in it. Just an empty pocket with rigid edges that crumpled and reshaped and stung. And with the early surgeries, starting chemo was pushed further and further away from me.

Eventually, I was deemed healed enough to begin my chemotherapy regime, but after both of my first cycles, I quickly became neutropenic. My body didn’t have enough white blood cells to fight infection, making me incredibly susceptible to sepsis, genuinely putting my life at risk. I was admitted to hospital with yet another infection in my breast as the skin that we thought had healed around my surgical scar became dark as it died. It was the same again. Fluid coming out. Risk of infection and losing the implant. The chronology of this is pretty lost on me, but one of the key memories I have of this time was one Sunday night where serous fluid was pouring from my scar, so much so that I couldn’t stand up without a river cascading down my torso. My husband grabbed literally every dressing that we had in the house and layered them on to try and deal with the flow until we could get to the breast clinic the next day. The pile of dressings thrown on transformed by right breast from a double D cup to about a J cup. But it was all we could do. We laughed at how utterly absurd that whole situation was. We cried a little that this had happened once more.

It reached a point where I was beyond exhausted. The skin had refused to heal. Once again there was liquid flowing from my body in places it shouldn’t have been. Once again my surgeon wanted to stitch me up but I was sick of surgeries. Between August and October, I’d had at least one operation a month. The emotional turmoil of thinking I’d healed only to discover that I hadn’t was too much for my brain to cope with as I was dealing with all the other side effects of treatment – the mental, the physical and the medical. I told him I was done. I asked him to take the implant out. He did.

Less than three months after having a mastectomy with an immediate reconstruction, I was left with a crater. An empty space where a huge part of my femininity had been. Now I’d truly lost my breast – and with it, a massive part of myself.
But, as with all of my cancer experience, it wasn’t all doom and gloom. I got a prosthetic and named her Gladys. I got a Knitted Knocker and called her Knit Tit. I got a prosthetic for swimming and named her Rebecca Adlington. I cried when I bought the massive mastectomy bras designed to hold these replacement boobs in position, but I cried with laughter when I realised the aqua prosthetic made a vaccuum and stuck to the wall with the right amount of pressure.

I’d be lying if I said living with one boob has been easy. It’s had a long lasting impact on my mental health, on my self confidence, hell, even my approach to fashion has been hugely altered. I don’t wear the same clothes I used to wear, because I don’t feel like the same person I was before I had treatment. In losing my breast, experiencing all of the physical changes that come along with cancer treatment, my already fractured self confidence shattered. It’s taking time to piece it back together. But it’s a case of taking every day as it comes.

Not long after I had my implant removed, I wrote a blog post about my decision to do so. I wrote “It’s not forever. I am so confident that when everything is done and dusted, my rockstar surgeon will be able to make me a new boob, and I’ll end up with something that looks realistic and I’m happy with.” And that’s what we’re working on now.

It’s over two years since I was diagnosed and I still haven’t managed to repair the damage done to my body by my cancer treatment, but we’re getting there. My most recent surgery was the third stage of my reconstruction, where my medical team used a process called lipografting to recreate a boob with a lot of my own tissue and a little implant (I have big bangers, part of the reason this whole process hasn’t been dead straight forward). It’s a slow process – I’ll have at least one more surgery before we’re done, but now if you passed me on the street in a tight fitting top, you’d never be able to tell that my right breast isn’t as it’s supposed to be. We’re almost there. It’s been a long journey. But it’s almost complete.

Cancer affects every part of your life. It might break your spirit. It might take your hair and your eyebrows and your eyelashes. It might take the part of you you’d always felt made you a woman. It affects your work, your relationships, your body image, your outlook on life, your day to day and your wider life plan. It leaves behind devastation.

But I guess my reconstruction can be seen as a bit of an allegory for how overall recovery from cancer goes. It’s tiring. It’s not always straightforward. It might not be perfect. There’ll be good days and there’ll be bad days. Days when you feel like a million bucks and others where you feel like a tramp. You’ll need help from those around you. You’ll need a steady pair of hands to guide you when you wobble. But perhaps most importantly – it takes time. I’ve been lucky in that I’ve had a reason not to snap back into “normal life” while I’ve been waiting for my reconstruction to be complete. The only person putting pressure on me to be OK is me.

So what I’m trying to say is – I’m two years down the line. I’m almost two boobs down the line too. But wherever you are in your “cancer journey” (blegh – hate that word). Give yourself time. Give your heart and your soul and your brain the sort of attention I’ve been getting from my rockstar surgeons and oncoplastic specialists. Become a specialist in looking after yourself. Become an expert in your own post-cancer reconstruction. And don’t rush it.

We’ll get back to a version of ourselves sometime soon. It just might be a little different from what we started off with.

Alice-May Purkiss. Breast Cancer Survivor. CoppaFeel! Trustee.

Northerner Alice was diagnosed with triple negative breast cancer at the age of 26. She decided to bravely blog about her experience to raise awareness of breast cancer in younger women and to get as many ladies as possible to #CheckYourChebs.

Alice reached out to me on the day I began sharing my boob situation on social media offering an abundance of support and sisterhood. She’s my cancer wing woman. My boob guardian babe. And an absolute f*cking legend.

Ms Purkiss is also in the process of writing a witty book about what it’s like being diagnosed with cancer when you’re battling depression. But the cleverly called: Life, Melons and Lemons – A Memoir needs a kickstart, a £3,000 one! Please back Alice HERE.

Find Alice Here: AliceMayPurkiss.co.uk
     @alicemaypurkiss