Previving breast cancer – BRCA2 gene and me (part 2)

Hopefully you caught part one of Bex’s story which she shared on An Ordinary Mummy a few weeks ago as the first post in – The Strength Behind The Smile series. The Strength behind The Smile aims to tell the stories of amazing women who are facing adversity and fighting their own personal battles.

For Bex that battle is taking unbelievably courageous decisions to save her life after she found out she is a carrier of the BRCA2 gene. For other’s who will tell their stories later in the series it is their battle against depression, anxiety and chronic pain. These are amazingly inspirational stories told in the persons own words, ordinary mum’s finding the strength to smile through their pain.

On that note I will hand over to the truly inspirational Bex.

I left you last time with one breast down and no idea of what was really going to happen next. On my last visit to Mr S, I was told that I could have my breast reconstructed, I thought this would be an easy process, It was not.


As I had been through two operations in a short period of time Mr S was wary of another operation so soon, plus because of suspected infection when they took my left implant out, I had to wait 12 weeks before they’d perform surgery again.

I also had to put on enough weight for a fat graft, basically liposuction. I was excited at the thought, as many people would be, I imagined myself with big breasts and teeny tight abs at the end of it. Well… Come December I was due my “fat grafting operation” and I was huge.

I remember I had my best and most dear friend’s wedding, which I was so excited about yet I was so uncomfortable, I was at least 2 stone heavier than usual and I had a breast one side but not the other. My bridesmaid dress was stunning, but still, I felt awful. I was so conscious of people noticing I had no breast. The hospital had given me a prosthetic to pop inside a specially fitted bra but the selection was limited and there was no strapless option at the time (which I needed for the dress) so I opted for lop-sidedness. Of course the wedding was beautiful and as no one was looking at me and with the abundance of wine, I swallowed my pride and had a wonderful time.

On the 23rd December I went in for my op. The idea was to take as much fat from my stomach and put it into my left breast “area”. As the weeks had gone on and my body had healed, my sunken tissue and skin had attached itself to my chest cavity. This made the operation very tricky, the idea being that the fat would push up the skin and create a barrier between the two. The operation was only a few hours and the desired result was achieved. Although when I looked down, my stomach was still huge. (I’m still to lose this weight!!!!)

I was sent away to enjoy Christmas with the family and await the next procedure, which at that time, was still unknown, even to Mr S.

Christmas & New Year went by wonderfully as I was counting all my blessings. Come February I was due my next operation. This one being the insertion of an expander. These are amazing devices which get inserted under the skin and then get filled up weekly/monthly etc to expand the skin which is then swapped tit for tat (excuse the pun) for a silicone implant. At this point I was still very flat on one side so I was looking forward to being able to see a little bump where my left breast should’ve been.

The operation went well & with the expander in place (but no real sign of size) I felt like a new woman. I felt nearly normal again. Not normal enough to jump out of my big jumpers but nearly. I was excited!

I went in to the Breast Care Clinic at UHNS once a week for fills. I need to say here, how amazing that unit was. I was the first person under Mr S to go through preventative surgery at North Staffs and the nurses were amazing. I was assigned a breast care nurse called Rachel, and to be honest, I don’t know how I would have got through it without her. She was there at my every appointment since day 1. She held my hand when I cried and hugged me tight. She laughed at my stupid jokes when I was nervous. She prepared the trolley for my fills, and talked to me about a whole load of shit whilst I was looking at the white wash walls, just to take my mind off it. I know she may never read this but Rachel in the Breast Care Unit at the, now, Royal Stoke. Thank you. Thank you so very, very much.

Fills were once a week. Expanders are quite remarkable little devices. They are fitted with a small magnet at the top and the surgeon/consultant hovers a small device over the top of the skin and it circles over where the magnet is, under the skin. The surgeon then puts a small needle into that spot and attaches it to a saline pouch. This is then pushed into the breast in a similar way that blood is taken out. Despite being remarkable they were hell to live through.

On average I was told that a lady can tolerate around 100-150cc each fill. I could barely take 20cc. My skin was too tight, it was too painful. This prolonged my next procedure. Mr S wanted me to a similar size of my other breast for cosmetic reasons, but we really struggled to get there. My right breast was around a 350cc implant and come 180cc my left expander and I had had enough.

At the end of May 2014, I was given my weekly fill. Mr S was on annual leave so his colleague was given the task. Bearing in mind the unit and the doctors do this fill all the time on various different women, it was just a run of the mill fill, or so we all thought. As per every fill, Mr X (as I’ll call him), hovered the magnet above my “breast” and found the spot to insert the needle. For some reason it hurt more than normal. When I said stop (which I always did when it got too uncomfortable) and he pulled the needle out, the saline squirted out too. I saw the panic on his and Rachel’s face. He put a dressing over it and kept pressing down to stop the leak. It didn’t stop.

I was told to stay in the hospital for 40 mins, go and have a coffee and then come back to the clinic. Paul and I went and tried to stay calm whilst pretending to drink coffee. 40 minutes couldn’t come soon enough. I was back with Mr X, who had cancelled his other appointments and taken me straight into his room, I was still leaking. All the saline over the last 3 months was slowly coming out. Somehow he’d punctured my expander and there was no way to seal it. I was sent to the breast care ultrasound and as there was fluid leaking inside me as well, I had to have it drained. This was unbelievably painful. Afterwards, I was sent home, bandaged, to see how I got on.

By 9pm I was in agony. There was no end to the leak and I was in a lot of pain. The skin had become inflamed and angry and I was so shit scared of what was happening. Paul rushed me up to the surgical unit and Mr X was called at 10:30pm from Birmingham to come and see me with urgency. I was admitted with a suspected infection and I was beyond gutted. What was going so well, had suddenly come crashing down around me. I was told just after midnight that Mr S had been contacted and that they were doing all they could. I couldn’t sleep of course and I was just sat in the dark, on the ward, sobbing.

hospital bed.jpg

At some point I must have dozed off as at 6am I was awoken by Mr S. I can not explain to you how happy I was to see his face. He had been there from day one and I suddenly felt safe, I knew I was going to be ok. He told me with urgency to get up. The rest of the ward was still asleep. He asked if I needed him to push me in a wheelchair, I said I was fine, I wasn’t letting this pain beat me to that point, I would walk.

Mr S then got out his key card and walked me through all the back corridors of the hospital. We must have walked through endless corridors, turning left here, right there, the whole time, him promising me that if it was the last thing he did, it was to sort me out. After all, this was meant to be a one time operation. I should’ve been in and out in August 2013, yet here I was again with another set back. We finally arrived at the ultrasound room. There was a wonderful women waiting there for me plus two of Mr S’s junior doctors, he had called them all in at 5am to see me. It was around 6:20am and I lay on a bed exactly as I had lay for the ultrasounds of my two little ones, yet this time it was on my breast that the sonographer put the device.

My cavity was full of fluid. Mr S literally gasped. A large needle was then put into my chest to drain as much fluid as possible. The whole time Mr S held my hand. Once done, we chatted for a few minutes before scanning again. It was bad. Mr S said surgery to remove the expander was the only option left. I cried. I cried so very much. I was tired of it all, al this for some sodding breasts. It really wasn’t worth it.

Mr S insisted that he pushed me back to the ward on the bed himself. He really was remarkable. On the way back, he explained that without the skin expanding as much as we wanted to, the only option was to put a smaller implant in as there was no way my skin would take an implant the size of my right breast. Also, without the strattice, I was unable to have an eyelet shape like my right, it would have to be a spherical one. Without the strattice to hold it in place, the chances were it would rotate over the years and an eyelet one would look pretty ridiculous the wrong way round. I just told him to do whatever. I’d had enough.

I was put first on the list for morning surgery and when Mr S came back to see me he had tears in his eyes. He marked me up with that wonderful black pen and told me he’d be there when I woke. He was true to his word. He was there. “I’m so sorry” …. They’d found an infection. They’d washed me out and pulled everything they could from me and although he’d put an implant in, chances were, he’d have to take it out. I was livid. I screamed. I’d had enough. I’d had enough of talking to my kids through Skype, I’d had enough of the pain, I’d had enough of it all. I wasn’t ill and I’d had enough of sitting in a hospital bed, like I was. Enough. I screamed at him to just take them both out. I’d rather be flat chested, sod the bloody breasts. I just wanted to be done with it.

I spent the next 3 days on the ward, being monitored. It was like I had some virus. Any sudden temperature Mr S was to be notified, I was having blood cultures ran every 12 hours next to my bed, I was on the most horrendous intravenous antibiotics and a bloody ton of them. At any one moment I was expecting to fall ill and be back in theatre, but you know what… 4 days later I was discharged. 2 months later I had my review. And 27 months later I still have my doubted implant.

I may have two different shaped breasts and they may be different sizes but I say sod it. I don’t care. I have no nipples and I have no worries. Breast Cancer can do one. I’ll tell the story of my ovaries and their removal another time!

Thank you so very much for reading my story.

Whatever life throws at you, you’ve got to stay positive. It’s a big life. You can do this.

Bex xxx

If you would like to find out more about the BRCA2 gene these are two excellent sites.

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