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What It Feels Like To Have A Double Mastectomy

Posted on: by Susan Barrett
Double-Mastectomy

Double mastectomy: one woman’s honest account of what it really feels like, physically and emotionally, to have both breasts removed. She also shares her powerful – and empowering – post-op pictures…

Jacqui Ramage is a 41-year-old, married mother of two young children living in Cape Town. She is also a cancer survivor who has been brave enough to share the story of her double mastectomy with us. We salute her.

How I discovered my cancer

Perspective is a wonderful thing. There are so many details I remember leading up to the diagnosis that make sense of the way I was feeling: Why was my form so off during my last promenade run? Why was my last boxing class fraught with heavy breathing and incomplete cardio? Ask any working, exercising wife and mother of two if she is tired – in fact, ask any woman living in the 21st century – and the answer is a deafening, resounding, “Hell, yes!”

I’d been lying in a well-deserved, late-night “mom” bath and took the time to observe my body. My right breast seemed a little bigger, but no more than is slightly usual (one side of the body is anatomically asymmetrical). When I got out of the bath, it also felt a bit heavier, so I decided to do a breast examination when I applied my body lotion.

I felt quite a large, slightly tender lump in the top left side of my right breast. As a pharmacist, I try my best to err on the side of logic, but as a woman, a small part of me panicked…

Then logic returned. I went through a process of elimination and deduction: 1) Jacqui, it’s the same boob you had a (clear) biopsy on over 12 years ago. 2) Jacqui, it’s the same boob that gave you issues breast-feeding two children. 3) Jacqui, it’s the same boob that had a blocked milk duct and you had small procedure on in between breast-feeding your kids. 4) Jacqui, you have no family history, so just schedule a routine check-up with your gynae, when you can, and life will go on.

Much like all the checks that get shelved: dental, dermatology, mammograms…

Read More: The Four Most Common Cancers

I remembered only a while later to schedule an appointment. In the lead-up, I explored the lymph nodes under my right arm: tender, more accentuated than the left. A red flag that I pushed to the back of my mind as educated paranoia.

The day of the appointment, my gynae performed all her routine checks despite having done them a few months back, and recommended a mammogram and ultrasound. I happily agreed, despite not being very excited at the prospect of having my life-long buddies squashed between “two cold metal plates”. I also had to concede that at 41, a mammogram is a necessary evil.

The breast specialist examined me, suspected a possible cyst, then sent me for the verifying mammogram and ultrasound. She also assured me, for the sake of being thorough that, whether benign or malignant, she’d want the lump removed. No problem – I am strong, I am resilient, I have faced greater challenges, I am woman.

At this point I’d like to assure you that a mammogram, if done with the compassion and attitude befitting the exposure of your jibblies to machinery, has actually progressed from “two cold metal plates” to the warm hands of a mammographer and see-through plastic!

Read More: What It Feels Like To Have A Mammogram

I then sat for an ultrasound on both breasts, with the radiographer commenting that an ultrasound is a good back-up to a mammogram on “young breasts because they are still dense”… All I remember is inwardly high-fiving myself for having young breasts at 41!

This mirth lasted for all of five seconds – until I heard the words no-one wants to hear. “I think I must just call the doctor to see this…”

A cyst would be round as it’s filled with water, but the pattern of this “lump” was irregular. A biopsy was recommended. The breast specialist confirmed a follow-up appointment, irrespective of the outcome, with disturbing parting words: “Perhaps bring someone with you to the appointment on Friday…” Red flag gets a little bigger.

Sans filter, a biopsy is a tissue sample of the perpetrator. Imagine a mini apple-corer, in the shape of a sharp needle attached to a tool. This corer is inserted as part of the needle into the lump, in the breast, under local anaesthetic. Did I mention that the lump was so dense that one needle corer was bent and needed “panel beating” before another four samples were taken? Cue toe-curling.

The diagnosis… and beyond

I was sitting at my desk. At 15.03 my phone rang… I remember the voice of my breast specialist saying I should come to my appointment with questions.

My words to her as I stared out the window at Lions Head were: “Just give it to me straight, please.”

“It’s cancer.”

I sat at my desk and cried. I then straightened my crown, pulled up my big girl panties and started ticking boxes.

The first person I called was my husband. How do you tell a significant other you have cancer? A significant other who lost his mother to cancer just over five years ago, when she was just 47, six years older than me when she died? You start the conversation by asking him if he’ll shave his head for you…

The second person I phoned was my friend. She didn’t answer, so I called my dad… Not my mom: this is not news she could receive over the phone, and she had my kids (seven-year-old daughter and five-year-old son) in the afternoon and would need to maintain composure until they could receive the news age-appropriately.

What does a dad say about his daughter’s breasts? Do some dads even register that their daughter’s have them? I emotionally told my dad not to freak out, because I knew he was going to, and told him the last thing that he ever expected me to say. “I have cancer…”

Read More: Running Helped Me Through Cancer

Deciding on the double mastectomy…

My words to my husband were, “I am taking both off – it’s not even an option.” This was rational – because not only would it make sense not to potentially have to go through the same experience again in two, three, 10 years’ time, but it would also be the most practical decision for eventual reconstruction.

Who wants uneven boobs circa 1980’s like Miss Ellie in Dallas? When a new-pair-of-boobs opportunity forces itself, you take it and run! This decision was made before I had even received full results of the nature, grade and extent of the tumour. And before I learnt that it was also in my lymph nodes. Yes, it wasn’t confined to my breast… The bugger had decided to spread its wings.

I prepared myself for the initial breast oncologist as I do for everything else: I make lists. I tick boxes. Because if all the rational options are ticked and explored, the emotions can happen freely without the inconvenience of a medical aid authorisation or admin delay.

Because one thing I do know is that there are going to be good and bad days and if you prepare adequately for the bad days, the good days can be spent on more meaningful missions like sunshine, mudpies and sand art instead of listening to automated voices telling you how important your 287 queuing call is.

I also decided immediately that I wanted to photo-document this journey with tasteful topless photos to remind me of the various perspectives of my boobs that have journeyed 41 years with me – through puberty, interesting intimacy and positions, two children, running and boxing. How would I have seen them? How would my husband have seen them? How would my children remember them? And how do I have fun with them?

Mastectomy_Boxing

Post-op: Jacqui displaying her fighting spirit.

Read More: Fighting Fit: I Am A Breast Cancer Survivor

The procedure

In order for the lymph nodes to be removed on the day of surgery, radioactive isotopes need to be injected into the actual node and surrounds again in order for them to be located in theatre five hours later – so the day started early. I remember chanelling DeadPool. I remember laughing at the size of the bag I’d packed for hospital.

I remember staring at my boobs for a long time, trying to take in each last freckle, line, scar on my nipple left where my daughter savaged it through breast-feeding, the colour of the areola. I remember only slight anxiety, but mostly I remember the support pouring in like Cape rain!

The amazing recollection of the actual procedure is not pain, nor fear… There is no pain, only discomfort and drainage bags that cause juggling issues when you need to go to the loo!

Read More: Ways To Slash Your Cancer Risk

Mastectomy_After2

“The thing about a mastectomy chest is that it’s not even an androgynous chest. Androgynous chests have nipples…”

The aftermath

I was only apprehensive about looking at my chest for a split second… It passed quickly. The thing about a mastectomy chest is that it’s not even an androgynous chest. Androgynous chests have nipples.

I felt immensely relieved that the tumour had been removed, that the detectable cancer was gone. There was a strange feeling of liberation.

I remember my first heartsore cry was not in the bed for the loss of my boobs, or “what makes me a woman”; the real tears flowed when a nurse offered to help me wash. She cleaned me with warm water, held my hand, wiped me with gentle strokes as I caught the first glimpse of my whole body in a mirror. She then washed my feet.

Rather than feeling sorry for myself, my emotional responses revolved around the feelings of my kids. Would they see me differently? Would they still want to lie on my bony, uncushioned chest?

I worried about the response of my husband – his bosom-buddies were gone. The heartache of my mom and dad…

I remember processing rationally the words of my surgeon post-op: the lymph nodes removed tested positive, so chemotherapy was a definite and the tumour was close to the chest wall, a marker for radiotherapy. Phew! Thank goodness I didn’t opt for immediate reconstruction. My logic is double mastectomy – chemotherapy – radiation – reconstruction – new start!

Besides, my kids had already started using their play bubble plastic toy to blow different sizes of new boobs to test – because of course they have the final say in my new and improved babies.

Read More: VIDEO: WH’s Wanita Shaves Her Head For Cancer

What makes me a woman?

Mastectomy_After

“Breasts have not and will not define my womanhood.”

As a processor, box-ticker, type-A, I tried to imagine all the scenarios of having a flat, nipple-less chest, no hair, no eyebrows and how it would define me. I came to the realisation that as fun as my boobs were, they do not define my femininity.

It was other people who defined that for me through my boobs, by what they said. “I couldn’t imagine losing my boobs” – this statement synchronised with the caressing of their own. “It must feel weird”…. What was weird was seeing my chest after the dressing had been removed, staples and all – enough to make a military man squirm.

I affectionately renamed myself Frankenchest for a short time and my kids had imagined art sessions on them, drawing eyes and a nose with the scars as mouths.

What really defines my view of myself as a woman is the soft touch of my child’s face, the gentle hug or kiss on soft lips, a gentle voice of encouragement, gentle eyes, how I carry myself and treat others around me.

This process is a funny thing…. The momentous memories you think will push you over the edge – surgeries, or watching nurses drain your own blood from a plastic bag under your arms – are not half as wrenching as that time you decide to have your first relaxing bath after episode one of chemo (instead of a shower), wash your hair and watch bits of it float around you like individual mermaids, or take a photo of the first eyelash you lose. Those moments catch you off-guard and send you under the water, adding tears to the bath.

Let me tell you though: these moments are necessary. They normalise it, they take it from surreal to in-the-moment. And they make you look forward to the next good day.

Breasts, boobs, mammaries, tits, puppies…. Call them what you will – they only add a soft bouncy bonus to how I view myself as a woman. They have not and will not define my womanhood.

For support or queries, contact Jacqui at operationspongeboob@gmail.com

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Got something to say?

  • Zoe

    Thank you for your honesty, bravery and power Jacqui. You are a phenomenal inspiration. Keeping it so real- words of truth and wisdom. Your rock!

  • Lois Carol Wessels

    What an inspiration – such courage !

  • Theresa

    You are an amazing inspiration to all women out there, God Bless u always ….

  • Tania

    what a legend!So fearless,taking cancer on and you came out ontop!absolutely beautiful and amazing!