Who We Are: Sewing After A Unilateral Mastectomy

In November 2017 I was diagnosed with breast cancer. I went through chemo, a unilateral mastectomy where they removed my left breast and several lymph nodes, then followed radiation therapy and now 10 years of medicine to stop the cancer from returning. Because of cancer treatment, I have lymphedema, which means that my left arm and hand is always swollen and bigger than the right. I have to wear a compression sleeve and glove all the time, to keep the swelling from increasing and hurting. Because of the lymphedema I cannot wear a prosthesis nor get reconstructive surgery…

So, I live with body asymmetry.

I am a single mum and used to taking care of everything myself from fixing a leaky drain to baking cute pink birthday cakes, but all of a sudden, I had to hand my body and my life over to doctors, and it was a complete loss of control. I had two weeks before I started on the first of 16 rounds of chemo, and the oncologist advised me to stop working, write a testament and simplify my life as much as possible. My cupboard was filled with clothes for a corporate life: fitted dresses, blazers and tailored silk shirts, totally unsuitable for what was to come. I immediately looked for something I knew would give me joy and four days after the diagnosis, I went to the biggest fabric store in Copenhagen, bought 10 meters of fabric in different designs and started sewing my way through breast cancer. 

I bought fabric with colourful designs to give me some joy and drafted a very simple tunic pattern with the ties attached slightly asymmetric to the side seams. The tunics were easy to get in and out of and in natural materials because chemo can make your skin itchy and sensitive, and of course short sleeves so there was easy access to my veins, for chemo and blood tests. I lived in my tunics for the entire six months I was in chemo. True comfort clothes.

Then came the mastectomy. My oncologist told me that I would have quite limited movement in my left side because she had to remove my left breast as well as tissue all the way from my collar bone to under my arms down to my lowest rib and my center front. This meant that I couldn’t reach to my back nor lift my arm any higher than to my shoulder for six months. So out went everything with zippers in the back and everything with princess seams, waist darts and bust darts. There is no use for a bust and waist darts where there is no bust.

I chose this cotton shirt dress to wear when going home from hospital after the mastectomy. Very importantly, it is buttoned down the front and sewn in a size bigger than usual so I wouldn’t have to move too much to get into it. I used vertical stripes and a pocket on my flat side to fool the eyes. It is the Simplicity 8014 pattern where I omitted the bust darts and added pleats to the waist seam to add more body to the top.

By this time, I was so ill and worn out. I had lost all my hair, had extremely limited movement in my left arm, lost weight during chemo, and I was in constant pain. I didn’t feel comfortable in any of the clothes in my cupboard or they didn’t fit me, I felt and looked twenty years older than I am. Actually, I had lost so much self-confidence that I was sure people thought I was a man and not a woman. The mind plays funny tricks on you when your body is filled with poison.

My left sided flatness makes most necklines fall quite deep on my chest which exposes my scar. My scar tissue was also so tender and sore that I couldn’t wear any of the prosthetic bras I had. So, I drafted and sewed camisoles with lace to cover my chest area. The lace also protected the skin on my chest from sun. The radiation therapy had made my skin so red and sore that any sunlight on it would hurt and scar my skin. 

All through treatment I received so much help from family, friends, colleagues and neighbours, but being this ill can, after a while, get to be a bit too much even for the people who love you.

Less than a month after surgery, I started on 25 rounds of radiation therapy. I was so fatigued that all I could do was lie on the sofa. I didn’t have the energy for visitors staying longer than 20 minutes, I couldn’t read, couldn’t stand the sound of the television or music, but I had to find something that I could do on that sofa, so I began looking at Instagram, searching for others who like me were sewing or crafting their way through illness. I noticed that the comments on many of the posts were very supportive, and I also found my way to the Sewcialists blog where I read some of the Who We Are stories. Reading them made me feel less isolated. So, I decided to reach out and ask some of the Instagrammers if they knew of any one else who was sewing through cancer, and the response was amazing. I had not been able to find anyone in Denmark who sewed for their new bodies, but the international community sure gave a very supportive response. someone told me of the book “Fast Fit — Easy Pattern Alterations for Every Figure” by Sandra Betzina. It has a great chapter on sewing for a post mastectomy body. Many Instagrammers alerted me to asymmetric patterns which are just perfect for an asymmetric body, I especially like the Japanese ones. A German Instagrammer gifted me a pattern from a Russian website and a Canadian Instagrammer offered to translate it for me. But most importantly, I met Instagrammers who also had been affected by cancer and severe illness and were coping with their life changes through sewing or other crafts and arts, and I was no longer alone.

The following year after my active treatment had ended, I spent sewing, posting my makes and communicating with other Instagrammers. This kind of communication is perfect when you are so fatigued that you have to take a nap before getting out of bed in the morning, I kid you not!!

When I was too ill or fatigued to sew, I looked at what makes other people posted on Instagram, and then, in my mind, drafted the patterns and imagined the steps of sewing the garment, or I made mood boards for future projects, and sewing planners on my laptop.

While receiving radiation therapy, I also started on the medicine that I have to take for the next ten years. This medicine made me gain quite a bit of weight again, and I now know that through sewing I can adapt to, embrace and eventually accept the changes my body goes through, and this makes me feel more in control of an ever-changing situation.

I got to know what is comfortable for my new body, so when I make something for myself now, I omit bust darts, add gathers or pleats to shoulder seams and waistlines to create volume. I use colourful fabric designs, stripes and add chest pockets and wear skirts and trousers in attention grabbing colours or designs to “pry the eye” away from my chest asymmetry. I love cowls because they create volume as do wide collars and pussy bows, often untied. Silk taffeta creates volume as do thicker jersey fabrics. Most of all I sew anything with an asymmetric design, as I have experienced that it is more effective to accentuate than to disguise.

I thought the pain, tension and swelling I had in my left arm was just after effects from surgery, but then I realized that sleeves who were loose fitting on my right arm were so tight on my left arm that I couldn’t get that sleeve on. I contacted my oncologist and was diagnosed with lymphedema. So now I am on a new journey of asymmetric sewing.

I can’t wear anything tight fitted on my left arm, so I am discovering kimono, bell, gathered, and dolman sleeves. I have to make bigger sleeve openings on my left side. The compression sleeve and glove which is made of quite a thick elastic poly fiber is very warm, so I mostly wear sleeveless tops and in cold weather a loose-fitted open shirt or kimono over the top. I have also had to let out a lot of the seam allowance in most of my two-seam sleeves and coats/jackets. I often have to remove cuffs on the RTW clothes I buy, because what fits on my right wrist is too tight on my left — or I remove the sleeves entirely, which is how I saved some of my silk shirts.

As soon as I posted on Instagram that I had lymphedema I received so much compassion and support from both the sewing community as well as the breast cancer community. Most of all I am grateful that so many has shared their own experiences with me, it helps so much to know that there are others who have similar experiences to oneself.

It has been close to impossible finding anything RTW made especially for asymmetric bodies, and impossible for me to find anything that I felt comfortable in. I do want my clothes to fit my body, not for my body to fit my clothes.

This has been and will continue to be an ongoing journey of sewing my way out of limitations into opportunities. I am learning to accept that slow sewing is still sewing no matter how long it takes. I have to focus on possibilities instead of limitations in order to live a full life, so I am currently searching Instagram for inspiration on loose-fitting bra patterns for one cup, as well as the perfect kimono with some sort of slight waist line accentuation, and I am always game for drafting a new top with an asymmetrically draped cowl.

Looking back, I went through hell. I have forgotten so much and blocked out most of the pain and despair because it is humanly impossible to carry with me. If you ever find yourself or your loved ones in a similar situation, I advise you to find something that brings you joy and hope. To me that is sewing and the international sewing community I have gotten to know through Instagram.

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Hi I’m Tina. By day I work as an administrator at a Danish University, and in my own time I sew and draw, as much as I possibly can. My grandmother taught me how to sew from a very early age, and every time I sew it is a revelation experiencing how I, with my hands, can bring into reality what I dream in my mind. I also love gardening and reading literature by Danish writers. You can follow my makes on Instagram @bricolagedk and see what inspires me on my Pinterest mood board.