Mastectomy and reconstruction - October 2021

 “Surgeons must be very careful

When they take the knife!

Underneath their fine incisions

Stirs the Culprit—Life!”

    ~ Emily Dickinson

Kia ora whānau, thank you for visiting. This episode is about my recent surgery: a single mastectomy with immediate reconstruction. The intention is to explain it as clearly as I can so people having a similar procedure (or who are supporting someone who is) can have another resource to call upon.

Please note this is being carried out in New Zealand, and different countries may have different types of surgeries that use similar terminology.

I have already had a lumpectomy with lymph node removal, so didn't need further lymph node removal. I opted for an immediate reconstruction as the public waiting list is so long for delayed reconstruction that I'll never actually make it to the top of the list. I had initially thought I wanted to see how I went with a straight mastectomy and possibly a delayed recon, but now I'm glad that that aspect of the decision was effectively made for me. It's now or never, as I can't afford to pay to go private later.

The Decision-making process

I won't lie, this was really hard for me to do. As I mentioned in an earlier episode I have struggled with the idea of mastectomy, because when I was diagnosed with breast cancer I was told I wouldn't need one. I think I really clung to that and so it was heartbreaking to get the news that due to a proliferation of DCIS I was going to need a mastectomy after all.

If you're reading this and struggling with it all then I want to say to you that it's ok to grieve, be angry, feel ripped off, or whatever you are feeling. Yes, it's probably a life-saving procedure, and yes it's better to have a breast removed than, say, a kidney - but it's still an extremely difficult thing to face. We don't get judged on the way our kidneys look, but we do get judged on our boobs.

"Phworgh! That's a nice pair!" said nobody ever about kidneys

Although everyone around me was very supportive of whatever I decided, I originally felt like a straight mastectomy (a.k.a. "going flat") was the better option as it was the least disruptive for my partner, my work, the health service etc. This was probably due to a mix of social conditioning and my own feelings of unworthiness making me not want to be too much of a bother. I've been working on both of these things in counselling and if you find yourself thinking along the lines of that option being "easier", "less of a hassle", "better for everyone" then it might be good to delve into that with a professional or a trusted friend. This is YOUR body and YOUR decision, and will affect you for the rest of YOUR life. This is one time you get to put everyone else's considerations aside and choose what is right for you and NOBODY ELSE.

I only had one person say "well it's obvious, a reconstruction is only cosmetic so it's a simple decision" - meaning anything other than going flat would be - I dunno - selfish or frivolous or something. Gah. This was said by someone who is not a woman and has no concept of the many complex layers cancer and mastectomy and societal ideas of femininity have. It was actually quite good in the end as it pissed me off so much I decided to stop listening to other people's opinions and just listen to myself.

I spoke to two women who the Cancer Society put me in touch with - one who went flat and one who had the recon I was considering. Both were incredibly generous with their time and honesty, and it was good to hear their experiences, but again it was a bit "noisy" in terms of other people's opinions in my head. The woman who stayed flat was some kind of superwoman who worked the whole way through treatment with barely a day off - it was actually really intimidating. I haven't really engaged much with other cancery people throughout this process and it's a real double-edged sword I think. There are so many amazing women with so much love and support to give, but as a person who can be easily influenced by others I found it better for me to listen to the health professionals and then come to my own conclusions. But everyone is different - you do you, as they say.

I saw the breast care nurse who showed me the amazing, NZ-made prosthetic breasts and they are really incredible - light and squishy and 'grippy' - different to the older, heavier types. I felt like they wouldn't be so bad perhaps, although as a fan of the v-neck top I worried that I'd have to buy all new high-neck tops. I also wondered about swimming and had mental pictures of chasing my escapee boob around the ocean!

Looks like a cross between garlic and a nose, but feels just like a boob!

However, I realised that every time I had a shower I cried at the thought of only having one boob and I started to think that maybe going flat wasn't the right decision for me. What sealed the deal was walking home one day, holding my handbag strap with my left hand pressing into the side of my left breast. I realised that there was something very me about this - for most of my adult life I'd carried my handbag like that and there was something about that two-way sensation between my side-boob and hand that felt comforting. In that moment I knew for sure that I wanted to have a reconstruction.

Once I'd made that decision it stuck; no more vacillating back and forwards. I also knew that I wanted a TRAM flap or similar. There are various options for reconstruction and I don't have space to describe them all here.

A free TRAM flap reconstruction is where the breast tissue is removed and replaced with fat and muscle from the belly. It is the most complex and disruptive of all the options, but gives a good long-term result. As you've probably worked out I was extremely anxious about the whole thing, but after meeting with the plastic surgeon who took a whole hour to explain the proceedure to me I was able to switch from a state of "I don't want this" to a state of "holy shit this is FASCINATING!". Switching from emotional to analytical was another great turning point and meant I was able to move towards the date with less terror and more engagement.

Note: As this is a free flap and not a pedicled flap it's all about the blood supply. A pedicled flap is where the donor tissue stays connected to blood supply and is pushed through the body to the new site. A free flap is where the tissue is cut entirely free and so has to be "re-plumbed" at the new site. This meant that I had two separate teams working - my breast surgeons from Wellington who would do the mastectomy, and the plastic surgeons from Hutt Hospital who would create the breast "mound" and connect all the blood vessels. See? fascinating.

The pre-op tasks

In addition to sorting out home, work and my recovery plan, I had various appointments to go to, blood tests, and meetings with the surgeons and a pre-op nurse. I am so impressed with the whole thing, and I felt really informed and supported the whole way through. Hutt hospital has a specialist plastics department that serves a large catchment area (Napier to Nelson) and provides an amazing wrap-around service. I am so incredibly lucky to live in NZ and be able to use our public health service. As Delta starts to spread I am very worried as the hospitals are stretched as they are - hopefully the government sends more help soon to protect this amazing service.

I had a CT scan to find the blood vessels in the donor site. This was done at a fancy new clinic and I was able to get a copy of the scans. It's REALLY WEIRD but amazing seeing your insides like that. The scan itself was ok, but my veins played hide and seek when they tried to put a line in for the chemical tracer so there was yet another painful dig about trying to find one. Chemo has been very unkind to my veins. Also they warn you that when the tracer dye goes in you feel like you've wet yourself and yup they weren't lying!

My actual insides! Can you spot the port-a-cath?

Then everything was done and surgery was nearly upon me. The day before was long and nerve-wracking but I went to the beach and pottered about as best I could.

Surgery day dawns

As we live an awkward drive away from Hutt Hospital we opted to stay the night prior in a motel near the hospital, and my partner also stayed there for most of my hospital stay so he could visit me before and after work. We had pizza delivered and watched some telly then I used the special wipes I'd been given to wash my body. The pre-op nurse gave me two packets of medicated wipes that you microwave and then wipe yourself with post-shower and then put clean clothes on. We took some photos of my body as I love a good before / after but no I'm not sharing those!

We had an early start - it's a long operation so we had to report at 7am. I had another shower and wipe-down and then we walked the 5 mins to the hospital. I had thought I'd be a total mess but I was ok. I think I was mostly relieved to be doing it rather than worrying about it. The only way past it is through it.

Hats off to the surgical team, they were warm, friendly, professional, funny, and caring. We had our own room to hang out in and the various doctors and nurses came to chat to us there. My partner was able to stay with me right up until I had to go in to theatre and it was calm and peaceful, which helped me stay calm and peaceful too. In Wellington hospital there aren't enough rooms to stay in the whole time so you end up alone in a weird holding bay which is noisy and stressful. It doesn't help at all with nerves.

I had been really worried I would lose it when it was time to say goodbye to my partner but I kept it together and was able to wave him off without crying. But then shit got real. I started feeling waves of anxiety and fear and I was doing my Wonder Woman stance when the nurse came back to take me to theatre. Hands on hips, hands up in the air - trying to feel strong by making myself big. I was talking myself into it and she was incredibly patient with me. I had obviously taken too long making myself big as we met another nurse on the way who had been sent to find us!

Yup, JUST like these badass women!

This nurse warned me just before we went in that there were a lot of people in there. She was NOT WRONG. I can't remember exactly how many but I think between 20-30 - there were three different groups of people and a few standing at the door waiting for us. The were all there for me, bloody hell. It was completely overwhelming and things started to feel very strange and scary. I clambered up on the table and was wondering what the weird noise was... after the third time I realised it was me. On my exhale my body was emitting a sound of pure fear and I didn't recognise it or even know it was me doing it. Everyone was kind and someone held my hand and at least three people spoke directly to me to calm me down while the anaesthetists did their magic and I knew nothing more about any of it just seconds later.

This was about 8:30am and we were prepared for it to be finishing up around 5pm. When I was awake enough to work out clocks again I noticed it was 9pm and felt dreadful for my partner, friends and family who would have been worried about it taking so long. The nurse gave me her phone to talk to my partner and then he dropped everything and ran to the hospital, bless him. I'd had a long day the day before, he had a long day that day. The surgeon visited but I didn't really process what she said, and I was pretty out of it and rambling. The recovery nurses must hear some bizarre stuff!

Note: The reason for the delay was that the big blood vessel they had identified in my belly fat from the CT scan had basically fallen apart when they prepped it for transplant - possibly due to the chemo, the previous abdominal surgery, or both. This meant they lost time and had to take a blood vessel from my muscle. It is better to not have to use muscle but apparently it was only a small amount taken and they didn't have to patch it up with mesh. Hopefully it all heals well without any bulging, but we'll just have to see what happens.

On the ward

I was taken up to the ward and my partner left about 11pm. I had a huge room to myself, a burns unit normally. I was very happy to be in a private room and I was utterly off my face! For the first 24 hours the transplant is checked every hour, so no sleep for me. Not that I could sleep, I was far too busy having deep and meaningful conversations with myself! I didn't have my phone, which I'm glad of, and I stayed up all night getting my weird on. Those poor nurses, getting the updates on my odd thoughts all night long!

The main blood supply needs to be checked hourly and they use a small ultrasound machine to do that - a "doppler" machine. When they found the pulse / doppler it sounded like how I imagine a baby's heartbeat sounds, but unfortunately my doppler kept moving around and we had many many long moments trying to find it - listening with every fibre in my body for the doppler and only hearing static was excruciating, but the joy of hearing the beat was immense. Around 2am a doctor was called to try and find the doppler and it was a long hour's wait alone telling myself over and over "everything is ok, everything is ok, and even if everything isn't ok, everything will be ok". I'm so glad I'd spent time meditating in the weeks prior to surgery as it helped to keep a lid on the rising panic we were losing the flap. Happily, the doctor located the doppler and another hour was ticked off.

Such an innocent looking thing that caused so much anguish!

There are other things they check - the breast mound should feel warm and soft, and pressing and releasing on the skin should show the blood return within a few seconds. All of these were fine so I felt mostly ok, but it was hard when the next day around lunchtime I was told to stop eating in case we had to go back the theatre as once again the doppler had gone AWOL. But in the end it settled down and the flap has taken really well.

Beginning the recovery

I'll spare you the boring details but the next few days were difficult as I made my way towards being able to get myself out of bed and get to the loo once the catheter had been removed. I felt so jealous for all of you that woke up then simply got out of bed and walked to the bathroom and peed. For me it was an hour-long mission involving at least two other people and a lot of pain and embarrassment. I fainted twice, once badly and alone, and once literally into a nurse's arms.

I had a bra fail - you have to buy two front-closing bras without underwires and wear a bra day and night for six weeks. The bras I got fitted me when I bought them but I should have gotten a larger size due to swelling. Happily a friend was able to do a mercy dash to Farmers and deliver two larger ones to me. Thank god for her. I think seeing me must have been a shock for her - I had no beanie on and was wrapped up in a lazy-boy chair - bald, pale, exhausted after a faint, and looking pretty cancery. She had a little cry and I cried after she left as it's hard to see people break down when they take one look at you. But I can't cry without my sinuses IMMEDIATELY filling with snot and there was ABSOLUTELY NO WAY I was going to be able to blow my nose so I had to save my main tears for a couple of weeks later when I could honk my goobies properly!

Thank you Miriam, you were a wonderful distraction!

Once I was able to get myself out of bed and to the bathroom I was a happier camper, and by day four I was pretty content listening to an audiobook or plinky-plonky music in my sweet and peaceful room. I had a view! It was quiet! I was feeling pretty stoked with myself that I'd nearly gotten through the whole stay without being moved to a ward when the door opened and the nurse announced that - yup you guessed it - I was moving to a ward. DAMMIT. She assured me they were lovely people but she was very very very wrong and I had a bad night. Around 2am I seriously considered calling a taxi but as I couldn't walk very far I realised it wasn't feasible.

The next morning I was pushing hard to get released, and happily the drains played ball and were able to be removed, my dressings were changed, and I was able to escape into the care of my father and step-mum. I stayed at their house for the next five days and it was amazing. I'll never forget the overwhelming joy I felt getting into the bed with soft sheets, cloud-like pillows, and most importantly NO OTHER PATIENTS OR THEIR VISITORS. Yes, I know I'm a spoiled brat but I don't care. There is, in my mind, absolutely no benefit to shared rooms and the sooner hospitals are redesigned so everyone gets their own room the better.

I've kind of lost a week, mostly down to the after-effects of a 12 hour general anaesthetic and vast quantities of pain relief. It was just perfect at Dad's - peaceful and happy and I was able to just relax and concentrate on getting better. It also meant that my partner could commute to the city for work and not worry about me being left alone. I couldn't do very much and really needed the help - I'm so grateful to them. Then, ten days after I left the cottage I returned home and it was lovely to see Lulu again and to be reunited with my partner.

My recovery has gone really well and everyone is happy with progress at the follow-up appointments, so that's good. I can move about much better now and don't have much pain but won't be able to do gardening or yoga for a while yet. I've decided to start easing back into work next week, which is a week ahead of schedule, and I'm glad to be able to work from home and set my own hours. Cancer is not fun, but I know how privileged I've been with my situation to be able to have the best chance at recovery.

And the breast "mound" is actually pretty great. I looked at pictures online after I was told I needed a mastectomy and they really freaked me out with all the scars but I think they were from delayed reconstructions - which is probably what I had searched for, now I think of it. Because it was an immediate recon my breast skin was preserved so it all looks really familiar - my own freckles and even the old scar from the lymph node removal back in Feb. The breast mound is pretty swollen at the moment but I think it will heal really well and look pretty normal. I would like to get to the stage one day where I can get undressed and not be instantly reminded that I had a mastectomy due to breast cancer.

The belly donor site has been far more painful and it's been difficult to stand or lie straight. I'm working with a physiotherapist to improve matters, and I'm being a goodie-two-shoes who does all her exercises so I'm hoping I'll be able to start gentle gardening and yoga in 3 weeks, and running and spoon carving in a few months. They made a new belly button! It's beautifully done but I find it quite bizarre. It would have been weirder without one, I suppose. My belly is the flattest it's been for decades, so there's a nice wee silver lining to my cancer cloud.

So all up I think the months of anguish and anxiety in the lead-up were far worse than the actual proceedure. It was a pretty uncomfortable few weeks post-op and I'll not be fully participating in the things I love for a few more months, but in the long term I know this was the best decision for me. I'm lucky that the transplant took, that I had excellent medical care, and that I am having a peaceful recovery. I'm determined to live my life beautifully and deeply from now on as that seems the best way to honour all the people, resources, technology and care that have been a part of this journey / shitshow / whatever you want to call it.

Thank you for reading all this, it's a long one! It's so helpful for me to process what happened by writing and sharing.