Delayed Reconstruction

5th March 2020

I was told I’d need a non-skin-sparing-mastectomy. Those words were pretty hard to absorb back in March 2017.
I’ve never heard anyone associate the word “mastectomy” with “hooray”. The word “mastectomy” felt so clinical and matter of fact in it’s delivery yet there I was receiving it as someone about to be mutilated in my most female parts. It was happening to me; a relatively insignificant person amongst the many women going through the same thing every day all over the world. Still, the impact was devastating and I wept repeatedly for a very long time and I consider myself to be pretty tough. Cancer made me a coward.

Outside of the breast cancer community, people don’t talk about mastectomies openly, it’s usually muttered under the breath as if its something taboo, like the opposite of nice lingerie. I was going to wake up with an empty space and every single bra in my lingerie draw would no longer be useful to me. A few weeks before my mastectomy I sorted through my bras as I couldn’t bear to come home and face looking at them after surgery. I set aside my favourite bras as I didn’t want to part with them. I buried them at the bottom of a draw so I didn’t have to part with them but didn’t have to look at them either.
It took me a long time to talk about this part of my treatment as I was so traumatised from the experience. As a regular in the breast cancer community, I was always happy to support others with their diagnosis and chemotherapy aspects of treatment but backed away from supporting women on this part of their treatment. I found it hard to know what to say when I hadn’t found a way to make peace with it myself. I couldn’t think of anything good to say about having a breast chopped off, other than getting rid of the cancer. I mostly referred to it as surgery or Mx in the community as I could dissociate better from it that way….. I didn’t like the M-word.

I waited almost two and a half years for my reconstruction surgery as I was on delayed reconstruction due to my high risk of recurrence as well as to give the skin time to repair after radiotherapy. I was ok with this in the first year post-mastectomy as I was relieved to have survived treatment and more worried about recurrence. The extra long wait was because I needed a TUG flap reconstruction (where tissue is transferred from the inner thigh) as this was about the only fat reserve I had on my slim frame. I’d been feeling quite depressed in the last few months whilst waiting for my reconstruction. The empty space on my chest was still a constant reminder that I’d had cancer and was altered and I felt very unsymmetrical. I wore a bra 24/7 since my surgery and avoided mirrors when undressed. I felt I should be moving forward by now but how could I move forward whilst I was still in limbo. I’d also had a pretty tough few months with the death of my last grandparent; my cat, Indi, being diagnosed with a rare cancer (and having a leg amputated to save her life) as well as both of my parents and a relative becoming seriously ill, all at the same time!

The harsh reality of cancer

Indi adapted really well to having her leg amputated. Ironically, it was her left leg, just as my cancer had also been left sided. At first I had to carry her to her food bowl, to her litter tray and to bed. She seemed to lack confidence and motivation but then as each day passed her confidence grew and she got braver and was soon jumping up on the sofa and back down again and slowly her feisty but lovable personality and strength of character were re-emerging. She had adapted. She had moved on…… but there I was not having lost a limb, just a breast, and still struggling. I realised that she didn’t need to think about moving on, as soon as she was healed she just got on with being a cat and did cat-like things. I felt I could learn from her, though the thought of eating kibbles didn’t appeal too much!

Joke aside, I realised that being human seemed more complicated than being a cat, still I liked the analogy. I felt more like I was on a mudslide waiting for it to end, but at least I had my music to listen to whilst sailing towards the bottom.

My reconstruction surgery had been cancelled once which I found quite difficult to deal with after such a long wait. I had an anxiety dream after this;
There were two of me; one version of me on the operating table being cut open for the tissue removal and the other version of me was watching and waiting to have the tissue transferred to my chest. The surgeon had the lump of tissue from my inner thigh in his hand which had to be transplanted onto the chest of the other version of me. There was someone lying on the second operating table and I had to wait for them to move so that I could lie in position ready for step two of my surgery. I was feeling very anxious about this. I mean, what if the surgeon dropped the piece of tissue whilst I was waiting for the bed!

I found it quite amusing that I should have such a bizarre dream but anyway, it makes for a funny story!

It was a cold January day, the day before I went into hospital for my reconstruction surgery. I was walking along a local footpath and could hear a sheep making some strange gurgling sounds. As I walked closer I could see, just beyond the fence, a sheep was lying down in the wet mud. She was on her side, struggling desperately to get up but completely helpless and she was just digging herself deeper with every attempt. With each push, half of her face was buried with mud blocking her eye and nostril. I hurried over to the fence and poked my foot through then pressed my foot against her back. I hoped this would give her just enough leverage to brace against so she could get up. She made several attempts to get up, rocking back and forth on her side. I kept my foot firm against her back until finally she made it back to her feet. She walked a few paces uphill to drier ground and stood looking back at me with half of her body and face caked in mud. We stood and looked at each other for a minute or two; I think she was saying thank you. I felt like I should have captured this special moment on video and uploaded it to social media, it was so wonderful but there it was unfilmed, my moment as a hero to one sheep! I think I saw myself in that sheep, I could relate to being stuck in the mud at the bottom of a hill as that’s just how depression had made me feel. I cherished the moment and walked on.

The day of my reconstruction surgery, which was first thing in the morning. I was going to be in hospital for three nights. Of course I knew what I’d need for surgery as I’d already written my own blog and could refer back to my list of essential items, though my bag seemed to contain more this time, including; an eye mask and ear plugs for a good nights sleep, a book and a personal fan as I knew I would be in a very warm room.

I arrived in the pre-op lounge and the surgeon asked if I knew what was going to happen in theatre. My reply was “a needle will be put in my hand and I’ll feel the anaesthetic travel up my arm which will hit my brain and I’ll probably giggle before I fall asleep and then I’ll reluctantly wake up and start being sick into a kidney bowl”. My nerves had made me recall my own previous experience. What the surgeon actually meant was “do you understand what is involved in the surgical procedure”. I felt a bit silly and then described what I knew was happening surgically……doh!

I changed into the hospital gown and walked to the theatre waiting area. Only a few minutes passed before I climbed up onto the theatre table. I felt good that I would soon be waking up with that part of me being rebuilt. This surgery felt very different to my mastectomy. This was putting back together what cancer had taken…… I woke up on and off for the rest of the day after surgery and was immediately pleased with the reconstruction. The surgeons had performed a small miracle and I was extremely grateful to them for that. How bizarre that self-acceptance can be so closely linked to aesthetics. It will never be perfect and I can accept that, but it felt much better than an empty space. I’d still have further surgery to go but this felt like moving forward in a way that women with immediate reconstruction can move forward. I realised my depression had lasted a long time because of this and I knew I could battle through the pain of the scars and more surgery as this was what I needed to move forward. I’ve chatted with other women who have chosen to not have reconstruction— “flat closure” or “half flat-closure” and we all have a strong bond that we all arrive in a different place and support each other in the decision which is right for us individually.

There are always risks involved with surgery and I was willing to take them. On balance I’m happier with my body now. I’m sure my family found it difficult as they are just glad I’m still alive but I did it for me — for my mental health.

If you’re considering options for reconstruction here’s some info to help get your head around it:
https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/breast-reconstruction

If you’re looking for a UK nipple tattoo specialist here’s an excellent site: https://www.nippletattoos.co.uk/

This is an excellent resource. It’s USA based so ahead of the UK game but gives great information as well as a peek at what we can look forward to in the future: https://breastadvocateapp.com/

If you’ve decided on flat closure or need support whilst awaiting a delayed reconstruction here’s a support group for just that: https://www.flatfriends.org.uk/