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.
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.
Tina, you are a true inspiration. Warm thoughts and hug (right side only!) from West Virginia, USA
Thank you so much for the right sided hug, all my best from Copenhagen
My diagnosis was a less severe case than your own, but, like everyone who has had the treatment, I really appreciate what you have been through. I’m full of admiration for your positive approach, and the wonderful garments you have created – particularly the last 2 photo’s, such a clever design.
So glad you found the positive, supporting community online. It was an eye-opener to me how very kind they can be.
It’s hard coming to terms with things not being back to normal after treatment. The fuzzy brain, hopeless memory, etc… that can make life so difficult, and all the physical things like lymphoedema that are now an unwelcome part of us. Appearance might seem minor, but you discover it is an essential part of your identity. I hope your lovely makes have helped you regain your femininity and confidence, they should!
Thank you so much for your message. It is so wonderful to meet other sewers and hear their stories.
I think I have sewn that design in at least five different fabrics. Right now, I have one in a black silk taffeta eyelet, that I just have to iron before I post it.
You are so right that recovery is a long and ongoing process. But sewing helps me manage it. I hope you also have something that brings you joy
All my best
What you have been through! Your designs and make are beautiful and clever and flattering. Your attitude is really inspiring.
Thank you so much Sydney. Reading about other peoples experiences with cancer and what they did to get through it was very inspiring for me (and still is). I hope that I by writing this post can pay it forward in my own small way
I think you did a great job introducing asymmetry and trompe d’oeil to your designs. People only really see what they expect to see on the whole, so I think that most of the time they would be fooled into not realising you had surgery.
Thank you very much. And you are so right. Often, I have been very selfconscious about my appearance, but have experienced when I meet new people that after a while they are very surprised when they hear that I am half flat. I think it mostly is a process of learning to accept and love who you are for all of us, no matter what challenges we might have.
Thank you so much for sharing your experiences and clever sewing designs.
You are welcome. It is a wonderful way to meet fellow sewers, and I do enjoy being inspired by what other people make
Dear Tina, you are so inspirational. You look beautiful in your new clothes. Warm greetings from New Zealand.
Thank you so much Anne-Marie. Sending you lots of sewing joy from Denmark
Your story is so inspirational Tina, would you give me permission to repost it?
I work with the Australian Sewing Guild, we have over 2000 members and 7000 followers on Facebook and Instagram. We are going to release a story of one of our members who designed a stunning “hat” rather than wear a wig. We would like to run a series of stories about how to inspire women recovering from cancer and how they were able to create clothing, hats and other accessories. Jude
Hi Jude, I would be honored if you would repost. Please, tag me on the post or let your followers know they can reach me on Instagram @bricolagedk, so I can answer any questions. You might also like to have a look at the Instagram post I have made about sewing mastectomy heart pillows. Sewcialists have reposted it for their givesewmuch challenge.
Tina, you have met this challenge with grace and a positive attitude. Your kimono jackets are so pretty .I, too, had breast cancer and realized as my treatment progressed, my life was essentially out of my control. I had wonderful doctors and it has been 18 years since my initial diagnosis. I know there are better days ahead for you so keep on creating!
Thank you so much Fran. Today those words mean the world to me coming from someone who is a long time suvivor. It is two years ago, to the day, that I got the diagnose, and I have been a bit sad, thinking if I ever will feel as well as I did before. Thank you for your support. It is one foot in front of the other, and forgiveness when I go slower than wished for.
I loved reading your story. It was so inspiring. I think you are so clever and creative to have developed such well thought out solutions to your fitting issues. I’m following you in Instagram now because I want to keep seeing your beautiful makes.
Thank you sew much. Please post comments, it is so wonderful to exchange ideas and sewing tips.
Good morning Tina from not so sunny Devon UK. Like many many other people I was diagnosed with an aggressive form of breast cancer back in November 2000. I felt as if something had sucked all the sunshine out of my life. I had two children aged 7 & 9 and I had to tell them that their mum was very ill. They were marvellous and so protective of me – they were incredible as was my husband. Without them I think I would have given up. Looking at them I knew I had to fight this monster and my mind set changed. Cancer was about to get its butt kicked!!!! I had a right site total mastectomy and like you now have lymphedema . Im not the best sewist around and haven’t really the knowledge on making my own clothes (my addiction is making Waldorf style dolls). I have trouble buying RTW clothing and tend to buy something if it fits my arm and hides a flat side (I don’t wear my falsie very often) even if I don’t particularly like the style!!!! Stupid really. Anyway Im still laughing at life, love my husband and kids (now 28 & 30) and like to think that the scars I carry are battle scars of which I am proud. You are an amazing woman and may you continue to be so. sending my love – Karen xxxx
Thank you so much for sharing your story. It means the world to me reading about long time survivors experiences. They inspire me and help me focus on that it will all get better and easier, as time passes. One of the mottos, I had posted on my bath room mirror was “Your scar is the proof that you are stronger, than whatever tried to hurt you”. Telling my son was most probably the hardest thing I’ve ever done, but fortunately his best friends mother had also suffered from breast cancer, so he got a lot of help and support from this friend. Do you know of @lymphedivas? They often post really inspiring fashion suggestions on their Instagram account. http://flatterfashion.co.uk/ has a seasonal blog on great RTW styles to buy. @goingflat https://www.goingflat.com/ does Skype personal shopping sessions for people like us.
All my best Tina xxxx
Hello Tina! I am so excited to find a site where we sew it’s can communicate & share ideas! I had a left side mastectomy 28 years ago. Four years ago I finally gave my silicone prosthetic the heave ho & decided I wasn’t going to disguise my Uni chest anymore.
I began to alter my RTW tops, flatten my bras on the left side. Fortunately for me I don’t have lymphedema so my only issue in clothes fitting me is that my left side is different from my right side. I alter my clothes to emphasize my flatness!
Hi Evangelina, It is wonderful to hear the story of someone like you, who have lived as a uni for several years. I hope I also in time will get to be as confident in my body as you are in yours. And I do agree with you that sharing ideas and experiences is the best.
[…] Sewcialists (2019). Who We Are: Sewing After A Unilateral Mastectomy. Retrieved from https://thesewcialists.com/2019/11/08/who-we-are-sewing-after-a-unilateral-mastectomy/ […]
I was referred to this site by a poster in my facebook group “sewing for my non-pregnant belly” because i have an assemmetrical double mastectomy…long story of one fail after another with the end result a body i call affectionately “the Potato” I read every word of your story and thank you for that Tina. I admire you so much for your determination to find solutions for one darn thing after another. And all with the fatigue (which makes me feel like a sloth on bad days). I especially love the coel blouses. Are these your own drafts or did you modify a pattern you had?
Hi Kathleen, Yes it is a tough journey, but all one can do is to put one foot in front of the other and continue continuing untill the path ends :-D. I love your sloth comparison, and can definitely relate to both that and the potato body :-). Some of the tops are from a German site http://www.schnittquelle.de. They have many great downloadable patterns for knitwear in English, the sewing instructions are not especially thorough, but I managed using Google Translate on the German sewing instructions from the Schnittquelle blog. https://schnittquelle.de/en/ebooks/ebooks-sewing-pattern-tops/ebook-shirt-losoue.html . Another pattern is from a Russian site https://grasser.ru/ it is called 528. (Be ware of their very small Russian sizes.They have a few patterns in English, but a lot more in Russian, where Google Translate comes in handy as well. Other patterns I have drafted my self, but if you have a look at my Instagram @bricolagedk I have posted photos of pattern layouts, that you might be able to use if you want to draft something similar. The camisoles are selfdrafted, but you can use the Ogden cami pattern to make something similar. The kimono is also selfdrafted, but https://naniiro.jp/textile/pattern-making have a couple of free kimono and Hanten patterns you can use. If you are on Facebook, have a look at the group “Sewing flat and asymmetrical” we are a group who share makes and pattern inspiration for our potato bodies and it has great inspiration on tops, dresses, swimwear, lingerie etc. Hope to see you there 🙂
Please also read Megan Kelsos blog piece on this site on how to pattern hack a bra pattern to fit a post mastectomy chest. She wrote it during the #allchestswelcome theme hosted by the sewscialist crowd earlier this year
You are one amazing woman! God love you! I love the clothes you have made….they are so flattering!! ❤️
Hi Elaine, Thank you so much for your kind words. It is important to wear clothes that make us feel comfortable no matter what our bodies look or feel like, and being able to make them myself is something that I am very grateful for.
Dear Tina, thank you for sharing your “hero’s journey ” with us, and for the beautiful clothing you have designed to suit your changing body. I will be studying the details that make it work for an asymmetrical shape. After invasive breast cancer 19 years ago I had a right side lumpectomy,chemo and radiation. At first the two sides were symmetrical but later the right side shrank (and was lumpy) while my left breast grew after menopause. I struggled with clothes that twisted etc. Just a month ago I was diagnosed with a new primary cancer, DCIS this time, so not as aggressive. I’m now recovering from a mastectomy and trying to figure out how to dress. Your posts will be very helpful.
One question I have right now, how do you support your remaining breast? I tried one of my old bras but it wasn’t comfortable on the scar.
Thanks again and best wishes for health and wellbeing,