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Writer's pictureIntersex Sarah

Double-Mastectomy and going flat experience

Updated: May 8, 2023

The 5th of January 2023 and it's 6am. I'm up earlier than I am for work, which is very unusual. To be honest I had quite a restless night, which is understandable considering what lays ahead.


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I had to have a glass of water at 6am because I wouldn’t be allowed anything else until after the surgery. Before having this glass of water I had to do a lateral flow covid-19 test to take with me as proof that I am negative.


With this done. I was checking my bag, which had - a book, magazine, headphones. pajamas for after the surgery and a few toiletries.


I was being picked up by my sister-in-law at 7.30am to take me and drop me off at the hospital.


Arrival


On arrival at the hospital I walked through and was told to take a seat. A nurse came out to collect me, so I gave my fiancée a kiss and followed anxiously after the nurse.


I was taken to a room and asked to get changed into a gown and dressing-gown, stockings and non-slip socks (see pic below).

Me changed and waiting

The nurse took some basic details off me, took some measurements - height, weight, blood pressure, etc. Then I was visited by the anaesthetist to check over the measurements and basic information.


Finally, I was then seen by my consultant/surgeon called Rachel, she asked me how I was and we had a brief conversation. Then she took out a sharpie and drew on my chest around each breast highlighting various points.


Going down


It was 9.30am. I’m waiting in the room and there was a knock, “are you ready.” This was it - it was time.


Following the nurse out of the room and into the corridor walking in my non-stick socks, across to the awaiting operation theatre.


It was a strange experience walking into the room where they will be doing my surgery. I could see all the people in there, all the doctors and nurses that will be conducting the procedure on me.

“With all the lights - center stage for what’s to come. I take my place.”

I was asked to lie-down on the single bed in the middle of the room, with all the lights - center stage for what’s to come. I take my place.


Once laying down the anaesthetist who visited me earlier came across, while a nurse was hooking me up to quite a few monitors/machines. and fitted my cannula into my hand expertly. After this my arms were moved wide and strapped down.

At this moment, it was all very real, and it was all happening so quickly. I remember I started to panic and feel anxious. I could feel by breath and heart quicken.


The anaesthetist said to me - just giving you some oxygen, as he popped a mask on my face and that was it - I was gone, I had drifted off.


Recovery


Waking up, I felt disorientated. All of the research that my fiancée and I did prior to surgery (you can read about my diagnosis here), seemed different. I thought I would come around and have drains from either side coming out of me and lots of padding.


What I realised is that every surgery is different and everyones experiences are also variable.


Instead the surgery went very well, I was under the anaesthetic for around three and a half hours in total. When I opened my eyes, there were no drains, no padding/pressure across my chest. I thought something had happened - I thought my operation hadn’t happened.


My surgeon and consultant came to see me not long after I came around. She said the surgery went very well, and because of my young(ish) age, and decision to go completely flat, they were able to take even more tissue; meaning they didn’t need to use drains.


At the time of the operation they also took two lymph nodes, to which I had to have a radio-isotope injection the day prior, to help the doctors locate the nodes during the procedure - these were taken from the affected side of my body, the right side - under the armpit.

“Given a cup of coffee and some biscuits - which tasted absolutely amazing.”

Not long later I was moved from the recovery bed, to a cubicle, given a cup of coffee and some biscuits - which tasted absolutely amazing. After a couple of hours observation, and a couple of coffees later, I was given my discharge papers and told I could go home.


Way home


I messaged my fiancée and she and my brother-in-law came to collect me. I was sat in the cubicle waiting for them. When they arrived a nurse escorted me out to them. I got a big hug from my fiancée and I spoke NFL to my brother-in-law who was driving us all the way home.


I had a bed cushion brought along for the ride home, this is so I could put it between me and the seat belt of the car, as this would go across my chest.


The journey was taken slowly and carefully, only the occasional bump I felt, but I was also still under the effects of the anaesthetic and intravenous pain-killers that was given to me during the op.


Post Op


Once home, I settled in a chair for a bit and chatted with my fiancée - I didn’t feel too tired. We had a small dinner, then I went and got settled in bed.


For the first week my fiancée slept in our spare room. Even though I didn’t have any drains, I still propped myself up with pillows to help with pressure on the arms and general comfort.


Also for that first week, I slept sitting up. That might sound weird, but it really helped. I had bought a travel neck pillow prior to the surgery and after the first night sleep I used this regularly to stop my head from drooping and potentially getting a sore neck.


Sleep was intermittent - I was sent home with codeine and was told to take that with paracetamol and ibuprofen. I took the Cocidamol sparingly, so during the day I had paracetamol every four hours and iboprofen every four hours - so, meaning I was having pain relief every two hours; the codeine I was taking as the last thing at night, as it made me drowsy.

“I’m not going to lie, the first week was pretty hard.”

I’m not going to lie, the first week was pretty hard. After the effects of the anaesthetic and pain relief of the surgery had worn off (between 18 to 24 hours post-op), I started to feel some pain and tightness - the pain medication routine definitely helped ease this.


Moving was hard. I couldn’t really move my arms that much. I had to have my fiancée‘s help with quite a lot - from making me food to pulling down my trousers so I could go to the loo. Things that I just took for granted previously, now needed extra help or more thought/concentration.


Showering was another challenge. Again aided by my incredible fiancée, I had my first shower three days post op. Again, it was a learning curve. Adjustments needed to be made. Also, you can shower 24 hours after the surgery, but you can’t use any soaps or antiperspirant until the wound has healed.


I couldn’t lift anything heavier than a kettle for 10 weeks, so that was tricky to learn and navigate. Also, where I had the lymph-nodes taken in my right arm-pit, this made it hard to reach things, I could feel it pulling. I had to retrain my natural instincts as a right-handed person to go and do things more with my left.


One of the weirdest things that I experienced as a result of the surgery was, after the first week, I then laid on my back when sleeping - I read this is the best position to sleep in following surgery. I popped a pillow underneath me slightly so I could change slight position in the night, as I’m a fidget normally when I sleep.

”When I would lie down I would hear this whooshing sound and it would gurgle - it was the weirdest thing.”

There was some fluid buildup on my chest and when I would lie down I would hear this whooshing sound and it would gurgle - it was the weirdest thing. The fluid was just learning where to go.


On my right-hand side, where I had the lymph-nodes removed I have a numbness on that side, which is a bit strange. They say to be careful when saving because you might not feel if you’ve cut yourself, which could lead to infections.


When leaving the hospital, and as part of my discharge pack, I was given some exercises to do and when to start doing them. These were great and really helped keep the motion in my arms and help to reduce the swelling and keep the strength up in my chest.


Looking and seeing


It took a few days to build up the courage to take a look and see my new chest. As there weren’t any drains and I didn’t have any reconstruction I didn’t have a lot of bandages or padding. I could see the tape they used.


They used this purple glue and dissolvable stitches across the two incisions that were made. At first they looked very bruised due to the colouring of the glue. The bruising started showing a couple of days post-op, and honestly, I was expecting more - the bruising wasn’t that bad.


For about five to six weeks the tape stayed stuck to me - even with showering and getting it damp/wet.

“My fiancée was great - she mentioned that, it’s better to do it sooner rather than later, and she held my hand as I looked for the first time.”

It was hard seeing them - I would get changed and not look down, but I knew deep down that I would have to see them at some point. My fiancée was great - she mentioned that, it’s better to do it sooner rather than later, and she held my hand as I looked for the first time.


Each time after that it became easier and easier to see it - it does get easier.


Support


I was incredibly touched by the amount of support I received from colleagues, friends and family while going through this. It really did help me, and it meant so much. The amount of cards and flowers I was sent was incredible - our house started to look like a florist.


My work were fantastic, as soon as I had the diagnosis my line manager took care of all the conversations with HR. I was signed off by the consultant for six weeks, which was definitely needed.


Then halfway through my recovery I received a care package with lots of goodies in, chocolates, crisps, a hoody, a book (next in the series I was reading), a book of word searches - to help pass the time. It was such a lovely thought/gesture.


My group of friends clubbed together and sent a massive box of ready meals to us, which was amazing and so thoughtful. This meant that on some days we didn’t have to think about meals or what to cook - it definitely made things easier for us.


For a couple of days, my Dad and Step-Mum came and stayed with us, meaning that my fiancée could have some time on her own, have a break, and not worry about me. That was so lovely of them.

”Just to know that others were thinking of me and wishing me well, and genuinely cared how I was doing - really touched me.“

The other thing that meant so much were the texts and phone calls, the check ins from friends and family. Just to know that others were thinking of me and wishing me well, and genuinely cared how I was doing - really touched me.


Thank you all! x


Six months later


I’m now six months post-op. It’s been an interesting six months.


My scars are healed and are settling in. The swelling has reduced and I am able to do much more than I could back in January/February.


Recently I have been back to the gym, just for some light swimming sessions, which have been great to be back doing some physical activity. The first trip to the gym I was quite apprehensive about changing following and tried to shield myself, which ended up being quite the faff, but now I don’t mind. I’ll still turn around, but I won’t actively try and hide my scars - I’m embracing them.


Prior to surgery I was advised that my variation of DCIS grows and is encouraged/feeds off hormones. Due to having Turner Syndrome I’m on HRT for treatment of that. I had a chat with the specialist/endocrinologis, who advised I stop taking it immediately.

“Not only was I going through the process and treatment for the double mastectomy, I was also having to manage the symptoms of the menopause coming off the HRT.”

This also had an impact, not only was I going through the process and treatment for the double mastectomy, I was also having to manage the symptoms of the menopause coming off the HRT. What really helped was the consultant put me on Venlafaxine to help manage the menopause symptoms and fortunately this has worked wonders for me.


Following the surgery the hospital sent all the tissue, plus the removed lymph nodes, for testing to make a thorough check to make sure all of the cancer had been removed. Due to going flat they had been able to remove much more tissue, meaning that I did not require extra treatment following surgery, i.e. radiotherapy, chemotherapy, or medication. I then got the news that there was no other cancer found and there was 77mm removed of the DCIS - I was discharged from oncology.


Personally, I‘m relieved - it now means I can move forward and carry on with my life. I’m so happy that it was caught when it was and it was extremely treatable. I’m just very thankful to have the risk severely reduced.


Doing my bit


I want to my bit to help the fight against cancer, so myself and my fiancée will be taking part in this years Cancer Research Race for Life 5km in Milton Keynes on June 11.


It’s thanks to the incredible strides being made in research that my cancer was detected so early, and my diagnosis of being BRCA2 positive, also helped in making sure I was having regular surveillance, so to catch it in its infancy. If you wish to donate you can find a link below - every little helps. Let’s kick cancers butt!



Tips and advice

  • The unit/department I was on was a general surgical ward. The nurses weren’t Breast Care Nurses. They offered me two softies (see image below). Don’t do what I did and think these were for ‘fashion’ and to create ‘a look’ - far from it, they’re very important, they’re used to create compression and to help reduce swelling - it’s imperative you start using these as soon as possible post-op.

My softies

For more advice the NHS website has some more information here.

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