Today we have the honour of introducing you to Ivania who has written a moving blog for us about her experiences following her diagnosis of breast cancer fourteen years ago.
Following her diagnosis, Ivania felt the loneliness that will be very familiar to so many of us as she didn’t know of anyone her age who was going through (or had gone through) breast cancer treatment.
Ivania took matters into her own hands five years ago and started a blog to document her experiences. She called her blog “Borrongonga” which is what her dad called her when she was a little girl.
Ivania told us that she wanted to write about her experiences, educate people about the challenges faced by young women diagnosed with this disease, and also help other women have a successful voyage during breast cancer treatment. We think this will strike a chord with many of you who are doing the same thing and are finding support and companionship in the community of amazing women out there on social media.
You can find Ivania on Instagram @borrongonga.
Here’s what Ivania has written for us today:
“Fourteen years ago, my life was apparently “perfect”. I was married to a nice guy, we had good health, we made a good living together, we traveled often, and we had good friends.
In 2006, we felt we were ready to start a family, I had a miscarriage in March and that September I received the terrible news that I had breast cancer.
There isn’t any required breast cancer screening for women under 40 in the United States. I was not one to do self-examinations and I still don’t; but for some strange reason, I found the lump myself.
I was 31 when I was diagnosed with stage 2 breast cancer. I did not know anything about cancer, at least anything good. I was not prepared to be sick. I was not ready to give up. I wanted to fight, but at that moment I did not think it was slightly conceivable to win any battle. I was already defeated because I did not know anything. I was blind.
Not knowing is perhaps your biggest enemy.
I think about the day when I first found out about my diagnosis and the feelings of distress, panic, anxiety, shock, and stress immediately come back. I realized that the wrong group of doctors were handling my case, so I decided to contact a good friend who worked at Massachusetts General Hospital (MGH) in Boston, MA. He pointed me in the right direction and recommended an Oncology surgeon right there at MGH.
It was 6:00pm on a Friday when I got to the hospital. All the staff were gone, but my surgeon was waiting for me. I spent about an hour with her and learned a lot about breast cancer: What it is, where it is located, how it progresses, etc.
She helped me understand everything with drawings and gave the most sincere and hopeful words. I loved her. I left the hospital feeling a tad better. I can’t say that I was super positive or optimistic, but at least I understood my disease and my options. I was educated.
The following week, I was scheduled to get an MRI to know the exact location of the tumor. After that, I had a date for surgery. My doctor successfully removed the tumor and 19 lymph nodes.
That was the easy part, then the hard work began.
After slightly recovering from surgery, I met with an oncologist – also at MGH. We discussed what my treatment was going to be like for the next 6 years. This included chemotherapy, Herceptin, radiation therapy and 5 years on a drug called Tamoxifen.
If you are at your prime for childbearing, and your treatment includes chemotherapy and Tamoxifen, then you should/must see a fertility doctor before starting chemotherapy.
I met with a fertility doctor, who had nothing to do with my treatment, and gave me the spiel about the hypothetical opportunity to become a mom through in vitro fertilization… In six years!
No, thank you.
How could I think about being a mom when my own life was at stake?
At that time, it was my personal decision to not pursue fertility treatments and to start chemotherapy ASAP. Being a mom, a healthy one, could wait.
I started chemotherapy as planned on a Monday morning. I showed up bright and early to my first treatment. At MGH a nurse is appointed to you and will be your chaperone throughout your treatment. The drill is pretty much the same every time – weight check, blood work, then treatment.
I guess a dreaded part of going through chemotherapy for many women is losing their hair. It is pretty easy to understand why. Hair is a sign of femininity. Losing your hair makes you look vulnerable and easy to label as someone who is sick.
Buying a wig to regain what you’ve lost is not a simple, straightforward solution – it’s not the same as the real thing. I got fitted for a synthetic wig, which I only wore once. Instead I wore scarves, which I found to be very easy and versatile. I had a few regular scarves that I just tied around my head, but my personal favorite was one that I could tie on top.
I lost my hair a few days after my second treatment. Knowing I would lose it, I decided to cut it off beforehand. I thought it would make seeing it fall out be less challenging.
Honestly, losing my hair did not faze me. I was more concerned about reaching a chemically induced menopause at 32.
My periods did stop after my second treatment. My doctors were not sure if they were ever going to come back. For the first time in my life, I wanted to get my period. I started to despair about the idea of ever having a biological family.
Getting breast cancer at 31 brought my world to a crashing halt and forced me to reevaluate my husband, my job, my life and what I wanted out of it.
I understood that I deserved to be with someone who shared my joie de vivre, my craziness, my laughter and my essence. I also learned that life is too short and that my wish was to share, in an unconditional way, a life project with a person with whom I could be myself with – a partner, not a boss.
Sometimes I can’t help but I wonder what went wrong in my marriage and if divorcing was inevitable, or if breast cancer had something to do with it. Interestingly enough, I think going through that ordeal made me understand that we were not right for each other. Breast cancer brought us together and distanced us at the same time.
My treatment lasted a year and a half, and that’s when we were the strongest as a couple. After treatment, I realized that we did not see life the same way. I wanted to find a way to make us strong as a couple again. I knew he wanted a family; but starting a biological one was not going to be an option for a while.
It was a very difficult time and a challenging situation, but probably the most convincing thing for me was to think: “I didn’t survive to have an existence where I don’t feel like I am living at all.” It took me two years to make a final decision about my marriage, but today I have no regrets about it.
After my divorce in 2010, I promised myself that I would always think about myself first. This is how my pursuit of happiness began. Unfortunately, I ran into situations where I didn’t make the best decisions.
I was meeting new people, but not the type of men I wanted to be with long term. Even though I was very busy at work, that was not enough distraction to keep my mind occupied. Most importantly, I felt very lonely and loneliness can be your worst counselor at times.⠀⠀⠀
I was seeing someone for about 2 years and one day I found out I was pregnant. Having gratitude for not feeling lonely and being with someone, made me think I was happy enough and in love with him. All of that and the pregnancy hormones made me believe that we could play house together.
And once again, I was wrong.
Today, fourteen years later, I don’t have my life figured out by any means; but all of this self-discovery led me to become a mom, the most rewarding experience of my life. I did go through a bad time, but I became a mom at the ‘right’ time. My six-year old son has brought so much joy to my life and has given me the most important reason to live.
He is the engine that keeps me alive. Thanks to him, I have a valid justification to strive for better things, avoid harmful situations, stay fit and live a healthy lifestyle.
I never thought about writing about my personal experience with breast cancer, but I thought that my story could raise awareness and help other young women going through the same thing I went through in 2006.
This is how “Borrongonga” – my personal blog – was born about 5 years ago, after a casual conversation during lunch with a friend. It is a blog that narrates my experience going through breast cancer, my recovery, my divorce, and becoming a mom 8 years after cancer.
Since I moved back to Colombia, after living in the United States for 15 years, writing became a cathartic exercise for me. So now I make it a habit to write about valuable life lessons, survivorship, motherhood, relationships, marriage, love, and the life I dream of.
2018 was a wonderful year for me because I gained closure to a lot of chapters in my life. I started working again, I finally forgave myself for my past decisions, I healed, I established an order of priorities in my life, and I accepted my single mom status.
Even though I haven’t been in a relationship for a while, I feel I’ve healed. I am ready to be in one with a person who truly loves and values me and, most importantly, respects who I am.
I am at my best moment as a woman, because I’ve learned to love myself, and am capable of having better control of my feelings and emotions. Even though I am still working on finding that almost perfect balance – where I am in full control of my decisions in a rational and assertive way; I would not want to lose my essence – a combination between a woman with a modern front and an inner chaste persona, who doesn’t want to forget about herself.”
Thank you, Ivania, for sharing your story. It is always a pleasure to connect with like minded women who feel as strongly as we do about supporting each other and sharing our stories.
It’s time for another fabulous guest blog!
Today we are delighted to introduce Kari.
Kari describes herself as a farm girl from Minnesota who now lives in the countryside in Wisconsin with her husband, two kids (ages 12 and 15), and her dog, Lucky.
Kari is a high school chemistry teacher and will shortly be starting her 21st year of teaching! Kari enjoys lazy lake days at her family’s cabin, reading, and spending time with those she loves.
You can find Kari on Instagram at @kekuhl
Kari has written about her experiences last year following her diagnosis. Here is Kari’s story:
“Life sure can turn on a dime and test you in ways you never expected.
Last year, 2019, was the year I never expected to have thrown at me, at least not yet. I was 43 and school was out for the summer; I’m a high school chemistry teacher. I was looking forward to lake days and playing chaperone to my two kids, ages 11 and 14. Instead, I spent the majority of the summer sitting in doctors’ offices, having biopsies and other myriad of tests, and finally the chemo chair. Oh, and let’s not forget about the 3 night stint in the hospital for a pretty bad deep vein thrombosis in my left arm.
The whole ordeal actually started in February. My husband found a lump in my right breast (yes, you can go down THAT road with assumptions!). He’s a family medicine physician and was able to get me in to see my doctor that morning and then an appointment that afternoon for an ultrasound. Luckily, it turned out to be a cyst. Fast forward 4 months. It’s now the end of June and I made the five hour trek with the kids to my mom and dad’s house for the weekend to celebrate my dad finishing chemo for bladder cancer. On the way, I started to get very intense breast pain and swelling. This was unlike anything I’d ever experienced. It was painful to move my arm and I couldn’t sleep, I assumed it was due to the cyst getting larger and having my period. A few days later, the pain and swelling began to subside, but I decided to have it checked out anyway, thinking I would need to get the cyst aspirated. My annual mammogram was due in a month, but I really didn’t want to wait. It’s a good thing I didn’t.
This time, as I sat in the waiting room of the Breast Center, I was much less anxious. After all, in my mind I already knew what it was. It turned out I was wrong. The cyst was indeed much larger and needed to be aspirated, but next to it was another mass that hadn’t been there in February, and it was not another cyst.
Two weeks later, I had 8mL of fluid drained from the cyst and the other mass biopsied. The next eight days were excruciating. I got the phone call the following day as I was in parking lot of our grocery store. I had triple negative invasive ductal carcinoma. I had zero risk factors but somehow cancer chose me.
Things happened so quickly I couldn’t breathe. It was like I was in a dream. I had a consult with a surgeon, a BRCA test (which was negative), an MRI, another biopsy for another mass that showed up on the MRI, my port-a-cath placed, a consult with oncology, a PET scan, and finally my first chemotherapy. Oh, I also had to tell my work I would not be returning to school that fall to teach.
Being an easygoing person, I had no idea what anxiety was until then. It was almost debilitating. Once I started chemo, it subsided some because I was actively doing something, but all I could think about was cancer. What if I died? How would my kids survive that? How would it affect my husband? What about my parents? I couldn’t sleep, had a panic attack while driving, and was so weak from the stress.
Miraculously, the chemo did not make me sick at all. That was about the only thing that seemed to be a bright spot. The anxiety kind of came to a head in August when I was in the hospital with a DVT, a deep vein thrombosis (blood clot), which was induced by my port. I spent 3 days in ICU being treated, and when they moved me to a regular medical floor, I finally broke down from the stress and anxiety when a nurse from interventional radiology happened to stop in to check on me. The poor guy. He had to listen to my blubbering and crying for 45 minutes. The next day I was finally on-board with taking something to help me out.
After this, things improved. I wasn’t sick from chemo, but I was horribly fatigued until I finished the first course (8 weeks of Adriamycin and cyclophosphamide). Once I started 10 weeks of taxol I bounced back and was able to go back to teaching 4 days a week, with chemo every Friday. I made it my mission to teach my students about how I was navigating cancer and how the treatments worked. The teacher became the student on Fridays, and then became the teacher again on Monday.
My hope is that my experience can show my students that when they are thrust into the cancer world at some point, either for themselves or a loved one, they’ll know that there is a light at the end of the tunnel.
I also learned a few things along the way that were not related to science. I found I had a far greater support system than I could’ve imagined.
My good friend, Tami, was there every day. She set up a Relay for Life team in my honor and also set up a meal train. She was with me for my PET scan and my first chemo. She came over when I couldn’t stand to be alone.
My kids, despite their own fears, were tough and resilient. My husband was steadfast, a calming voice of reason, and beyond supportive.
My dad, who had just gone through his own bout with cancer, made so many trips to be my babysitter I lost count. He was who I called when I needed someone to tell me I was thinking crazy thoughts.
I also learned that I’m a tough cookie and a positive outlook makes all the difference. I may not be able to change my circumstances, but I sure can choose how I react to them. It’s also ok to ask for help, both from others and from anti-anxiety meds. That was a tough pill to swallow.
Now it’s 2020 and a year later. I endured 20 weeks of chemo, a single mastectomy with no reconstruction, the removal of three lymph nodes (all of which were negative for cancer), and two other stints in the hospital for a DVT. Yes, two. I got another one five days after surgery. But here I am with hair growing back and, despite COVID, the excitement of a new school year because this year I get to go back on day one.
Cancer sucks. It ruled my thoughts and emotions for over six months. But it’s not getting any more of my energy.”
Thank you, Kari, for talking so openly about everything you have been through. We agree with you; you’re one tough cookie!
A conversation with Leanne Pero @leanneperoofficial
Hi everyone, Eleanor here. I hope you’ve been enjoying our series of guest blogs as much as I have?
Today we have something a little different. I was absolutely delighted to have the opportunity to have a conversation with Leanne Pero recently. Leanne has been on my list of “people I’d love to chat with” for such a long time!
If you don’t know much about Leanne, allow me to introduce her. Leanne has a remarkable list of accomplishments and accolades to her name. She has won numerous awards including “Young Entrepreneur of the Year” and Black Business Initiative Life Changer of the Year” and has been a finalist for many more. She is a business woman, author, dancer and charity CEO.
Leanne started her career at a young age; launching The Movement Factory when she was 15. The Movement Factory is a community dance initiative with a mission to create positive change, empowerment and personal development through dance.
Leanne self-published her first book in 2016. Entitled “Take Control”, Leanne’s book draws on her own experiences as an award winning entrepreneur and also shares her personal story of her journey to self-love and acceptance following sexual abuse as a child.
However, I found Leanne as a result of the work she does to support women within the BAME (Black, Asian and Minority Ethnic) community who have experienced breast cancer. Leanne was diagnosed with breast cancer when she was 30. She underwent chemotherapy and a bilateral mastectomy before receiving the all clear in 2017. She’s spoken about the feelings of isolation and shame she experienced following her diagnosis. While she was going through treatment for breast cancer, Leanne started sharing her experiences via her blog and ultimately this lead to the creation of her cancer charity the “Leanne Pero Foundation” and it’s initiative “Black Women Rising”. But more on that later!
Arising out of Black Women Rising, Leanne also created the UK’s first ever all Black female cancer exhibition “Black Women Rising – The Untold Cancer Stories” which details the journeys of 14 BAME women who have had breast cancer. If you haven’t seen any of the images, I encourage you to seek them out because they are both powerful and beautiful.
So you can see that we had a great deal to talk about! Here’s what we had to say:
Hi Leanne, it’s wonderful to have the opportunity to speak with you today. Perhaps we could start off with you telling me a bit more about you?
I was one of those people who went through childhood sexual abuse between the age of 10 and 13 which resulted in me moving out of my family home at a very young age. So I had to grow up very quickly. And whilst I was going through a court case to bring my abuser to trial (which unfortunately ended up collapsing), dance was what saved me. I started dance when I was about 11 and first started secondary school and dance really saved me.
When I was about 15 and that ordeal was over, I was in the process of the initial healing stages. I was attached to a dance school and they saw that I had the potential to teach…I’ve always been bossy! And they saw what dance had done for me and I had this real desire to help other young women who had been going through really tough times and to use dance as the tool that had really helped me to help them as well.
So that’s how the Movement Factory was born when I was 15 years old. It was my first job and it was £6 and hour which I thought was amazing! And I remember the first class I taught was so packed that it had a waiting list. It was a fantastic start to an amazing career during which I have had the pleasure of seeing the difference it makes to young people’s lives and seeing the success stories. I celebrate 20 years next year.
It’s been brilliant. Our ethos is still the same as it was at the beginning: we’re here to help young people and we use dance to help them socially build happy, healthy lives in whatever they choose to do.
It seems to me that there are two themes there that have carried on throughout your career; supporting other women, sharing your experiences and your story to lift, elevate and support other women to share their stories and the idea of the importance of creative expression which comes through everything you’ve done.
You published your first book, “Take Control”, in 2016. Tell me a little bit about that?
After I went through the sexual abuse I suffered terrible post-traumatic stress disorder when I was about 19 or 20. We were still living in a time when mental health was such a taboo and no one admitted struggling. I had some counselling in my early twenties and that was the first time I had had access to real counselling and I learnt so many hints and tips about real self-care. I wanted to talk about my ordeal and how it had come back to haunt me and the things I’d learned so I started writing a memoir of my story. I used my story to share some of the tips and hints that I had found really helpful because I wanted to help other young people who had gone through depression like I had. I released “Take Control” when I was 30; about 6 months before I got breast cancer.
It seems that having that written creative outlet is something that really important for you as well. I was looking at some of the blogs that you wrote throughout your cancer treatment which I think are really powerful. Is that something that helped you throughout your cancer diagnosis and treatment?
Oh my god, yeah. I’ve always been a writer and a creative writer and writing was very therapeutic for me. Just having a place to express myself.
My mum has had breast cancer twice. She first had it when she was 36. I don’t actually remember her having it the first time; I sort of remember her going through it but I don’t remember her full journey.
I released my book in February 2016 and sadly two weeks later my mum was diagnosed with breast cancer for the second time. She caught it early so she didn’t have to have any other treatment and had a mastectomy straight away.
I was diagnosed shortly after. I had found a lump earlier in the year but dismissed it after I spoke to my GP and I was told that I was too young.
When I was diagnosed, the whole family was so shocked. I was devastated. Shock doesn’t cover it! I think for us all it was such a shock because I had always been a really healthy dancer. I’ve danced all my life, I’ve always been into the gym and had a good diet. It was so unexpected. I couldn’t eat for about 9 days. I went into absolute shock.
The thing that really got me was the sense of shame which meant that I went through my treatment with very few people knowing. I came off most social media, I didn’t tell people.
I remember not feeling like I could relate to anybody. I didn’t know about any black people who had had cancer, let alone any young black women who had had breast cancer. And I felt like my body had failed me so I went into a place of feeling completely isolated and I hid away.
When I did speak to people in my community, I was met by various unhelpful comments that made me feel quite guilty for having cancer.
Going through anything like this, it’s gut wrenching and awful and so isolating. To then have on top of that that feeling of shame must have been awful. Tell me about that and where that came from because I think that’s lead you to what you have done subsequently.
My commitment to the community has always been very clear. I feel like it’s my purpose in life. I’m good at it. Everyone has a purpose in life and I feel like mine is to serve my community.
I knew I couldn’t go through the diagnosis and not use what I’d learnt to come back to my community.
I wanted to educate people that this can happen to young people as well. So I started to record my experience in a blog documenting important milestones like my first chemo, the day I shaved my hair, my surgery.
Breast Cancer Now picked up one of the blogs and asked if they could publish it on their site. When they did, I was inundated with messages from women saying “I’m going through the same thing as you” and sharing some really horrible stories. I realised that women were seriously suffering, were seriously traumatised by what they had been through and that this was lasting for sometimes years after their treatment. They told me things like they’d effectively been banished from their families as a result of their diagnosis or people had disappeared from their lives because of fear they would “catch” cancer.
I spoke openly about the fact that I had lost a lot of friends from my community, people I’d known for years and gone on holiday with, people I thought of as my best friends. They stopped talking to me after my diagnosis and when I was going through cancer. They didn’t understand why this was happening to me.
I realised there were many challenges for women of colour going through a cancer diagnosis and treatment and that many women felt isolated and traumatised by the experience.
Then I started to delve deeper into the uncomfortableness around cancer in the black community. Some women were telling me that they had been told “don’t cut off your breasts, God doesn’t want you to cut off your breasts”, or “don’t take the drugs, they’re ungodly,” “we can pray away your cancer.” I was even told at one point that someone had coughed up their cancer. I heard about women being told not to come over to family for Christmas because they didn’t want people to feel uncomfortable or to know their business.
I became an advisor to a lot of women and realised that I was still traumatised myself and I couldn’t do it alone. So one day my mum baked some cakes and we had a kettle in my office and I invited women to come down and have some peer to peer support. And we started out with eight women and we’ve not stopped since!
That’s how Black Women Rising started; as a peer support group for women of colour to come together and share their stories and experiences of cancer.
I went on to formally create a charity; the Leanne Pero Foundation, in 2018. The charity is growing all the time. The most successful project underneath is it to date is Black Women Rising but we have some further projects in the pipeline including Black Men Rising which will be launching in 2021.
Black Women Rising has done really well and it think that’s because it’s just a very genuine project and there’s not really anything else like it.
Now we have an amazing magazine in the pipeline to continue to provide support and resources for women going through a cancer diagnosis and treatment. It’s going to be a “one stop shop” where people can find help and support.
This sounds amazing. Tells me a bit about the magazine. Where it’s come from and what it’s going to be?
It’s going to be a glossy magazine that we’re hoping to release annually. It’s going to have beautiful pictures of women, case studies and resources, hints and tips, books to read, hints and tips for family members. Some stuff around the clinical stuff. Lots of bits to help and support women.
The idea is that it’s a resource that people can come back to. We want to ensure that we have a resource that women can refer to at the drop of a hat because we have a lot of women coming to us asking for advice or direction and we want to ensure we are able to support them.
One thing that has become clear as Black Women Rising has grown is that when a large group of women come together and talk about our experiences of cancer, we’re finding that we have similar side effects. That’s a huge thing that people to know because cancer can be so isolating.
It’s so important. I remember my surgeon showing me a book of photos of women who had had surgery to help me to understand what my outcome might be like. All of whom were lovely and gorgeous but he was trying to give me an idea of what my body might look like after surgery but I was 24 and all of these women were about 20 to 30 years older than me. I found that quite isolating at the time. I think it’s so powerful having a resource where women are able to see other women like them.
And it’s so interesting having conversations with women and finding that you have shared experiences that perhaps we’ve never discussed in any medical capacity. I’m so passionate about women not having to feel shamed, and alone and isolated like you did. It breaks my heart thinking about it.
Same. Just the same!
The other things that comes across in a lot of what you’ve done is that there are so many aspects of cancer treatment that are not necessarily talked about much while going through treatment. For example, I’ve spoken to women who have gone through their treatment or preventative surgery and get to the end and it’s almost like they’re just released and there are so many aspects of recovery that aren’t necessarily picked up elsewhere. So I noticed, for example, that a lot of your blogs were about your femininity and about the relationship you had with your femininity. Is that one of the things that made you think about doing the photo series “Black Women Rising – Untold Stories”?
Yes, of course. Because breast cancer robs you of everything that society would say makes you a woman. You lose part of your breasts, like I lost both my breasts. I did have reconstruction but in a way that doesn’t matter because I know they’re not my own. And you lose your hair and your eyelashes. So much is stripped away.
My body has never been the same since I had cancer. Because of the surgery I had, my pec muscles are above my implants. I’ve got my arm strength back but I will never be able to do the stuff I did before. I don’t have the physical capacity to go that hardcore any more. I don’t even have the brain capacity some days!
My body has changed but I have a better sense of self than I did before. I’m more secure than I was before. But at the same time, I am able to put myself to one side and do these campaigns because I want to normalise different bodies. First of all to normalise bodies of different sizes and say it doesn’t matter what size you are. It doesn’t matter what you’ve been through. You can still look lovely, sexy and glamorous. I love it. I’m proud of my body and what it’s done. And I’m proud to represent my women.
I’m a girly girl. I’ve always loved dressing up and being glamorous. Why should we stop that after cancer? We need to feel good!
Sex and intimacy is a huge topic that is coming out of the wood work when I speak to women. Because women are struggling because they don’t feel good.
So “Black Women Rising – Untold Stories” really had two purposes. It was aimed at spreading awareness of breast cancer amongst the BAME community. It was and is very clear to me that a lot of work needs to be done to get more visibility for BAME cancer patients.
But just as importantly, that series of those photos was for the women themselves. It wasn’t just about showing people. It was also about the women. Most of those women cried when they first saw their pictures because that was the first time they’d seen what their bodies looked like. So many of their first reactions were self-critical; “I’ve put on weight”, “I look fat”, “this isn’t right”.
This is what I’m about – making people feel better.
I think as we go through treatment we become very accustomed in some respects to showing our bodies. I was thinking about the medical photography I’ve had and the MRIs and so on. And you’re used to people seeing and prodding your body. But, on the other hand, there’s this need to feel yourself again and to reclaim your body and feel feminine again whatever that means to you.
So true. I’m 3 years cancer free now and one of the things I’ve been thinking about recently is the amount I’ve criticised my body. That criticism hasn’t changed my body in any way.
It’s so tempting to come out of cancer treatment and try to chase certain ideas of what constitutes beauty. You hit the gym, go to the hairdressers etc…. I don’t think those are the things that make you beautiful.
For me it was about going really deep within and finding self-acceptance. Because if you sit and compare yourself to how society thinks we should be happiness is just not going to happen. Because we’re not that. For me it was more about digging deeper within.
Some of the times I’ve felt most beautiful have been post cancer. Don’t get me wrong, I have my ups and downs but some of the most beautiful moments I’ve had have been post cancer because of that self acceptance and being happy with how I am and being thankful for my body and just accepting things for what they are. Having said that, it’s a really difficult path to get there.
When I got the all clear, I threw myself into changing my diet and going to the gym and chasing that idea of what I should be and look like. What did I do? I gave myself a hernia!
We feel like it’s so external but it’s not. It’s internal. You’ve got to dig deep.
Which leads me neatly to your “Positive Day Planner” which you’ve recently launched.
I put that together after cancer. I’ve always written journals. I have hundreds and hundreds of notebooks and journals.
I used to have many notebooks that I wrote different things in and I found I just needed a “one stop shop” to record all the things that helped me through the day. Things like gratitude, writing down hopes and wishes for the future, planning the day ahead, having a breather before the day started to settle some of the anxieties. But also, at the end of the day, thinking what really helped? What was great today?
So I created the Positive Day Planner. I just made it by hand to begin with and photocopied the pages as an insert for my own journal. And then I realised that I was kind of giving this information to people anyway so I thought I would create a useful tool that people could use.
I found the printer and the distributer and did a massive photoshoot so I was ready to launch. And then we went in to lockdown! I was planning to release it in March and had booked some talks and a venue for the launch. I held off releasing it to begin with but I launched at the end of June because the time felt right.
It’s a 21 day planner. A place where you can create your own happiness. Because we are in control of that.
The exercises I designed for the planner really helped me after cancer. I feel that as a society we look externally so much for validation. A lot of unhappiness seems to boil down to looking for happiness outside ourselves. But happiness comes from within. The planner has really helped me to centre myself every day and I wanted to share that with other people.
You obviously have a lot of plates you are spinning and you give so much of yourself in terms of sharing your story and supporting others, how do you make sure you’re looking after you and not giving everything?
Gratitude, prayer, yoga. I do a lot of centring. I do my own daily spiritual practice to check in with myself. These are the tools I revert back to all the time, including the tools in the Positive Day Planner. I make time. If it doesn’t get done, it will get done tomorrow. It’s ok to take your time. I think cancer was really good at showing me that.
Thank you so much, Leanne for taking the time to speak with me and sharing your amazing story.
If you’d like to find out more about any of the things Leanne and I have spoken about today, you can find out more here:
We’re delighted to introduce Susan. Susan is a digital communications professional and carries the BRCA2 gene.
She had a preventative double mastectomy with direct to implant, under the muscle reconstruction in December 2017 which makes her a proud breast cancer previvor.
Having had successfully coached herself to prepare for this surgery she is now working towards a Life Coaching diploma with a view to help people tackle their goals and improve their lives through the life changing magic of coaching.
You can find her on Instagram as @lookatsusie (as lookatsusan was already taken!).
Susan believes that mental health is equally important as physical health and just because she’s lost her breast tissue it doesn’t mean she’s lost her sense of humour.
After three knee surgeries in the last four years one of her goals is to strengthen her knee and leg enough so she can run every day…to catch her bus.
Without further ado, let’s hear from Susan!
“It was May 2013 when Angelina Jolie announced that she was a carrier of the BRCA1 gene mutation. She stated that this had given her a 87% chance of breast cancer and on the back of that knowledge, had made the decision to have a preventative bi-lateral mastectomy.
Back in May 2013 I was still five months away from receiving the results of my own blood test for the BRCA2 mutation. When I read her announcement and brave surgical decision, I remember thinking that Angelina was such a perfect ambassador for BRCA awareness and breast cancer prevention. To me she represented beauty, femininity and, above all, strength. I thought that if my results showed that I carried the mutated gene, then I would be proud to be associated with her.
You see, two years prior to Angelina’s announcement I had begun pursuing genetic testing as I became increasing aware of the prevalence of breast cancer on my dad’s side of the family. My dad’s mum had breast cancer. As did his sister (three times no less), his aunty and his female cousin. That’s a lot of breast cancer to consider.
Because of this niggling family history, I found myself broaching the subject with a practice nurse during a routine pill check in the spring of 2011. It was a sort of ‘by-the-by” kind of thing. I hadn’t previously discussed my growing concerns with anyone, not with my then partner, nor with my family or friends. To be brutally honest I wasn’t even sure what to ask…
“There’s a lot of breast cancer in my family..” I began.
“What side is it on?”
“Mainly my dad’s.”
“It doesn’t come down the father’s side” I was told by the nurse. Dismissed. Case closed.
Months later I tried again. Another pill check. Another practice nurse. Again, I told them about my family history of breast cancer.
“It doesn’t come down the father’s side”, I was told again.
I wasn’t taking no for answer this time.
“It’s on my mum’s side too.” I pressed, determined not to be fobbed off this time. This was true, my mum’s sister had finished her treatment for breast cancer and was still being closely monitored. So, on the back of it being present on both sides of my family, the nurse (I have to admit, somewhat reluctantly) referred me for genetic testing.
For this genetic testing meeting I was asked to bring in a family tree with the types of cancer my relatives had developed and the age they got it. After the consultant looked at my family history, he confirmed that due to the breast cancer history on my dad’s side, it did suggest that hereditary breast cancer ran in my family. To be certain I would have to have to have a blood test. Before that I would have to have genetic counselling so I was aware of the impact on my life should my test came back positive.
I had my genetic counselling and blood taken in October 2011. However, before it could be tested for the gene, a geneticist from my team explained that my breast cancer surviving aunty (my dad’s sister) had to have her blood tested first. This was to try and identify a mutation in her DNA. It’s like being given a book and looking through it to find a spelling mistake. Once you find a spelling mistake in that book, you know what you’re looking for and it’s easier finding it in other books. The other ‘books’ being my dad and myself.
Thanks to the complexities of the NHS and the difference of BRCA testing criteria between NHS areas it took a long time to get confirmation. My auntie’s genetic team in the North East had a stricter testing criteria than my team in London and were very reluctant to test her. In fact they initially flat out refused. It took some lobbying on my part to push this along. I say lobbying, I simply told my softly spoken geneticist in no uncertain terms, to Make This Happen. I had gotten this far into the process, I certainly wasn’t stopping now. To his credit and to with my undying gratitude, he made a passionate case for me, pointing out that my auntie had had breast cancer three times, and so they agreed to test her.
So, after waiting a painfully long year to find out that my auntie carried the mutated BRCA2 gene it was my dad’s turn to get his blood tested. He had the same spelling mistake. Then it was finally (finally!) my turn. After two very long years of waiting, somewhat bizarrely to the very day, I finally got my results in October 2013.
Being BRCA2 positive with my genetic variant (there are hundreds of known variants) put my risk of getting breast cancer somewhere between 70%-80%. Not as high as Angelina as the BRCA2 mutation carries less risk, but still very high. All things considered I think I took this news on the chin, as soon as my dad told me he had the gene I kind of knew deep down that I had it as I don’t physically take after my mum. I only cried that day because Billy Elliot is a very emotional musical. Honest 😉
I was immediately put under yearly MRI monitoring. At first, I was fine with just monitoring. Cutting off my healthy breasts felt counter intuitive and unnecessary. However, after my second MRI scan in January 2015 I had had enough. Scanxiety is a real thing l and I kept reminding myself of how high my risk was. I was fed up wondering after every scan if this was the year I would get breast cancer. I decided it was no way to live.
Reader, I chose to have a preventative bi-lateral mastectomy.
I had this preventative bi-lateral mastectomy with immediate reconstruction in December 2017. Was this an easy decision to make? Hell, no. Was the recovery difficult? God yes – more difficult than I imagined, both physically and emotionally. It’s a weird grieving process. It’s traumatic. It’s painful. It’s effectively an elective amputation which I stupidly tried to minimise because I didn’t have breast cancer.
Am I glad that I had it done? 100% yes. I no longer have the threat of breast cancer hanging over my head. My risk has been reduced from 80% down to somewhere around 5%. Hooray!
Not only do I no longer worry about getting breast cancer; aesthetically, I’m very happy too. I had a direct to implant reconstruction, placed partially under the muscle. I had a boudoir style photo shoot before my surgery to help me say ‘goodbye’ to the girls. Not only did this help me to emotionally prepare for my upcoming physical change, it also gave me an opportunity to compare my breasts as to how they used to be. Looking back, I genuinely think they look better now post-surgery. Thanks to my clever surgeons I managed to keep my nipples and I’m roughly the same size; both of which I’m thankful for. I didn’t want to feel as if I would be losing anything from having this annoying mutation.
I now have more headspace. I may not have had breast cancer, however just like having breast cancer, my life was effectively put on pause and everything revolved around hospital appointments and surgery consultations. It’s no exaggeration that it took over my life for many years. I was mono focussed – reading, researching and making decisions. Literally everything I did in the year leading up to my surgery date was to help me prepare for it. Work was something I did to pay the bills and I wasn’t even considering a new relationship.
Having a BRCA mutation does focus the mind, at the least the thought of having it definitely did. I broke up with my ex-partner in 2011 soon after I had my genetic counselling and gave my blood sample. It wasn’t the reason we broke up, however I believe it was a factor. The thought of spending the rest of my life with someone who moaned when I had a cold wasn’t really appealing. If they couldn’t care for me when I had a virus for a week (Susan, I’m playing a game), what would they be like if I had cancer? I imagine probably a bit sh*t.
Actually, it’s only just having written this that I’ve realised I’ve cut out some unhelpful people in my life (as well as cutting out unhelpful breasts) as part of this journey.
Reflecting back, I’ve definitely learnt a lot about myself. I had many ladies said to me that they couldn’t do what I have done. And once, years ago, I’m sure I felt like that too. However, I no longer remember that person. I’ve come to realise that people are stronger than they believe themselves to be.
More specifically, I am more stronger than I believed myself to be.
No one wants to become a member of the preventative mastectomy club; however, I’ve discovered there are definite upsides in joining the ranks. Not only have I futureproofed myself against breast cancer (I secretly call myself Susan 2.0 now) and can crack on with my life, I’m proud to part of a group of people who have had to make these difficult choices.
We are bold. We have courage and we can definitely do hard things. “
Thank you so much for your blog, Susan. So much of it resonated with us here at Valiant HQ. We love the idea of Susan 2.0 and we totally agree; we are bold and courageous and we can do hard things!
We have another fabulous guest blog for you today. It’s a real pleasure to introduce Alison (@alisonwillie8). Alison describes herself as a busy wife, mum of two, receptionist at Leeds Gymnastics Club, business owner, proud Sheffield Wednesday fan. She says she is half way to being a proud previvor!
Alison has written about her experiences finding out about the history of breast cancer in her family, undergoing genetic testing and ultimately the decisions she has made upon learning about the BRCA1 genetic mutation. Here’s Alison’s story:
“I sat in the doctors surgery aged 20 and told my GP that I was worried that breast cancer was going to come for me. Dramatic perhaps, but my nan had just died of it not long before. She’d had it twice and watching her suffer had affected me deeply. Despite my concern, the doctor did not seem worried and I was sent on my way.
Fast forward 18 years and there I am again, sat in my doctors surgery. This time advising them that the BRCA1 gene mutation had been discovered after my nan’s only surviving sister had undergone genetic testing. This time, luckily, I got a very different response.
I was asked to draw a family tree and mark those who’d had a cancer diagnosis and or had died from it. I knew there was a history running down my dad’s side of the family but only once it was there in black and white did it really hit home just how scarily real this was.
Breast cancer had taken the lives of so many relatives and there was absolutely no way that I was going to become another name on that list!
I planned to pursue the testing on my own, without anyone knowing. I didn’t want people worrying and just wanted to know where I stood so I could do something about it.
When the family history forms arrived though, it was obvious that it just couldn’t work that way. There were too many questions that I simply didn’t know the answers to.
A few months later a letter arrived with an appointment to see the genetic counselor. I didn’t like the sound of that! Why did I need to see a counselor when I know what I wanted?!
I convinced myself that they would try and talk me out of it, that they’d say I didn’t need testing. I spent days before the appointment planning how I would argue my case.
In reality I couldn’t have been more wrong. They were nothing but supportive. The genetic counselor completely understood that I was a mum, that I needed to know if I carried the gene mutation too, not only to make sure I was alive to see my children grow up but also so I could prepare them for the chances of also carrying it. The bloods were taken there and then and so began the wait.
The call came during our family holiday.
I knew what she was going to say. I had long since made peace with the likelihood of it being positive and as crazy as it sounds I felt relieved to know now where I stood.
That’s not to say I wasn’t upset. I was. That word, positive, had now changed things. Yes, it meant choices regarding my body but that’s not what got me. It was the 50/50 odds of me having passed it on to my kids that I found hard to accept. All a parent wants is to protect their children and I felt like I’d failed in that.
Always one to be in the know, I set about researching. Along the way I found not only information but people, just like me. I call them my “BRCA buddies”. They are such amazingly strong women. So open and honest and always prepared to share their stories, even the gory, personal bits. It was just what I needed. They were getting through their journey and so could I. And maybe I could repay the favour in the future and help other people too. I felt empowered.
Appointments came through pretty quickly from there. Specialist breast nurse, breast & gynae surgeons and my first round of annual screening.
Anyone who’s been through a breast MRI will know what an odd experience it is. I don’t think I’ve ever laid in a more uncomfortable position; face down, arms overhead with boobs dangling down through two holes in the table, oh and don’t forget the evening primrose capsules they tape to your nipples! Writing that, I have to laugh but at the time it’s not quite so funny.
A couple of days before Christmas I got a letter calling me back for more tests.
I called, desperately wanting to know what they’d seen. All they could tell me was that it was something on the right side, close to my arm pit. That was when I really did start to worry.
I tried to put it out of my mind. I didn’t want to spoil Christmas. Luckily, after a few anxious hours of what felt like endless mammograms and ultra sounds they decided that it was just my breast tissue and nothing to be concerned about. Phew! I was so relieved but I was then adamant, no way could I do this every year. For me there was no other option. I wanted rid of every part of my body that was going to try and kill me!
I’d always thought that I would have my mastectomy first as I deemed my boobs to be my biggest threat but while still waiting to see the breast surgeon I was offered a date for the hysterectomy and decided to just get one out of the way as soon as possible! I was fast approaching 40 and just didn’t want this hanging over for me any longer.
The operation went well and the recovery was quick. I was so glad I’d done it. I now felt like things were moving and it was a relief.
A few weeks post surgery I was offered a date for my mastectomy. March 25th. I couldn’t believe my luck. Both operations would be done and dusted. I’d be able to celebrate the big 40 with new boobs… that wouldn’t need holding up by a bra! For the first time in years I was going to wear whatever dress I wanted without having to worry about scaffolding!
3 days before the big day, COVID happened and my mastectomy was put on hold and now we wait again.
While completely understandable It was also frustrating. I’d packed my bag. I’d prepared the kids. My husband and I had prepared ourselves.
Lockdown brought many positives though. We got to spend more time together as a family, we took steps to get fit and be more healthy and in a bid to do something other than attempting to home school my 12 year old daughter and 13 year old autistic son, I set up my own business with Forever Living, sharing high quality aloe Vera products to support people trying to look and feel better.
Hopefully I won’t have too long to wait now. I can’t wait to finish this journey and be able to wear my previvor badge with pride!
I want to finish by saying a toast…. Here’s to those who are no longer with us, but who in death gave us the key to knowledge. The knowledge that gives us choices. Choices that mean we are in control of our own destiny and also mean we get to see our kids grow up. Cheers everyone. “
Thank you, Alison, for trusting us to share your story. We know you were apprehensive about the act of writing it all down but you needn’t have worried – we think your writing is wonderful and approachable and we empathised no end. (We vividly remember the undignified MRI set up!) Your story is important and we are honoured to share it!
It’s Friday, it’s almost the weekend, it’s a beautiful day AND we have another amazing blog for you!
We’re thrilled to introduce today’s blog which is written by the wonderful Sarah. Sarah was one of the first people our founder, Eleanor, connected with on Instagram but it took Eleanor quite a while to realise that Sarah only lives a few miles away!
Sarah works full-time as a social worker having retrained after being diagnosed with breast cancer at the age of 35. In her spare time she is a trustee of registered charity Flat Friends UK, and she is the founder of flatterfashion.co.uk.
Since she had a mastectomy without reconstruction, Sarah has been developing a fabulous resource of tips for dressing flat after single or double mastectomy – which can be found on her website or in Flat Friends’ patient booklet “Living without reconstruction”.
Sarah is also currently completing a year long “Outflat” fundraising campaign in aid of Flat Friends.
You can find Sarah at flatterfashion.co.uk and on Instagram at @flatterfashion.
Without further ado, here’s Sarah!
“It’s been said that being diagnosed with cancer is like sitting an exam in a foreign language you haven’t had time to learn. We have to rely on our healthcare team to translate for us and we go online in search of exam tips.
On 18th December 2014 I was diagnosed with a fast growing invasive breast cancer in my right breast after finding a small lump behind my nipple two months earlier. On instantly declining the idea of reconstruction my breast care team warned me I would be “very flat” and wouldn’t be able to find nice clothes. The Breast Cancer Care patient booklet on clothes told me that women living without reconstruction who don’t wear prostheses could “disguise” their chest by wearing scarves and loose fitting tops. I searched online: “Which clothes suit a flat chest?”, “Post-mastectomy fashion”, “Clothes without reconstruction”, “living and dressing flat” (and every configuration of those words you can imagine). A website about living flat had one page about clothing but frustratingly gave the same advice of baggy tops and scarves.
I was 35 and being told that if I didn’t reconstruct then I would need to spend the rest of my life concealing my body; as if the public shouldn’t be confronted by a woman without two breasts. Another thing which struck me was that there were only two varieties of living flat portrayed online: either needing to cover up, or wanting to appear androgynous. On finding Flat Friends a few months later I realised that’s far from the truth. “Flat” is the space where a breast once was, it’s not the whole of your chest nor how you choose to present your chest to the world. All women living without reconstruction after a single or double mastectomy – whether they choose to wear prostheses always, sometimes or never – are “Living Flat”.
After many days and weeks scouring social media I found two women in the UK and one in the US who were open about living flat and sharing photos of their daily lives without a strategically placed scarf in sight. I genuinely thought we must be the only ones; that everyone else was hiding in plain sight, or having recon. I imagined I wasn’t the first woman to be in this position; doubting a gut instinct because of how we’re expected to look. I quickly became concerned that some may agree to have reconstruction based on their team, cancer charities, or the internet telling them that the alternative will be unrecognisable and uninhabitable.
The thought that there may be women getting dressed each day in a cloak of secrecy, fearing if they do not obscure their chest then they risk offending society, inflamed an idea to create the resource I had been looking for. Within a couple of weeks of having my mastectomy I had worked out how to build a website and uploaded my first post: “The One Where I Tried On Everything In My 34DD Wardrobe”. I was having to start from scratch working out which fabrics, styles, shapes, designs, seams, and darts would flatter my new body shape.
The day before each chemo I would use my short-lived energy to go to a high street store and try on clothes. I photographed and documented each discovery for my website and social media, whilst picking out themes and criteria which eventually became my list of fashion tips for dressing single or double flat chests. Just as “Living Flat” is an inclusive term so is “Dressing Flat”. Dressing Flat is not the preserve of those who have no breasts, and is not describing an attempt to appear flat. It’s what each of us does every day when we pick out which top or bra to wear.
After five years of mastectomy fashion blogging I have compiled a wardrobe of clothes I feel comfortable and confident in. A huge variety of colours and prints, frills and ruffles, floaty and fitted. Everything from workwear, sportswear, and evening gowns to swimming costumes and bikinis. Plus a padded crop top and a pair of Knitted Knockers. That doesn’t mean I don’t have days when I think nothing looks right and I declare ‘I have nothing to wear!’ – that’s something that happens whether you have two breasts, one, or none. Most days I’m oblivious to my chest’s appearance – it’s my normal and I’m comfortable in my body. Some days I’m acutely aware I don’t have two breasts and I’m sure everyone is looking at me trying to work out what’s missing. But I don’t think you can tell that from my posts because online we are encouraged to share only our best moments – the enviable events; the picturesque location; an emotive attention-grabbing post, or the perfect outfit because they’re what get the most likes and comments.
I’ve never been your typical fashion blogger or instagrammer; rather than wanting to be an influencer I just want to create practical content for women to use when they’re wondering if they’ll be able to wear a bikini, a smart work outfit, or an evening dress if they don’t have reconstruction. The aim is to spare the next woman the initial ground work and trepidation when navigating clothes shopping without two breasts by sharing the basic principles. The rest – finding our own style and experimenting through trial and error – is something we each have to do as individuals, just as we did the first time round as teenagers and young women working out what suited us and reflected our personalities. Over the past couple of years it’s been exciting to see more women sharing their own flat style, either in the Flat Friends seasonal fashion blogs on my website or by starting their own personal Instagram accounts.
For five years I have just shared my latest shopping trips; focused posts about swimwear or evening wear, or the occasional noteworthy outing or outfit. I don’t usually post on a daily basis; so, I decided that in 2020 I would set myself the challenge of sharing an unfiltered selfie everyday in my outfit of the day – my “outflat” outfits! I hope that by sharing 366 days of dressing without two breasts others who are feeling self conscious will see that Dressing Flat isn’t about perfectly staged photos or needing to validate yourself to others; it’s the reality of picking out something to wear day in day out. Finding clothes that you feel comfortable in, and of looking at your reflection as you go about your day and recognising yourself looking back is the only thing that matters. Don’t let your team, the internet or social media trick you into believing you need to completely re-imagine who you are or be taught how to dress yourself. Find inspiration from others; feel empowered to try different styles, and why not share what you discover to hearten the next woman searching for ideas!
As well as creating useful content I hope my #Outflat campaign will also raise money to support the work of Flat Friends UK, a charity which is dedicated to supporting women who have had single or double mastectomy surgery without breast reconstruction, including those who may face such decisions now or in the future. I am very proud to be a trustee of Flat Friends UK: we believe living without reconstruction is a positive outcome and work to normalise living without two breasts and providing support to women living flat, including those waiting for delayed reconstruction. You can find out more at www.flatfriends.org.uk and you can sponsor me at uk.virginmoneygiving.com/SarahCoombes3“
Thank you so much, Sarah, for sharing your story with us today. If you haven’t checked out Sarah’s #Outflat campaign, we strongly advise you to do so – we love seeing the wonderful outfits Sarah pulls together everyday!
We’ve said it before and we’ll say it again… we love connecting with you, getting to know you and sharing your stories.
Today we’re honoured to introduce you to Elle. Elle is 28 and lives in beautiful Australia. She was diagnosed with High Grade DCIS last year when she was just 27 and underwent first a lumpectomy and then a double mastectomy.
In addition to raising money to help researchers in Australia find new and more effective and less invasive ways to detect and treat breast cancer, and putting together care packages for women in hospital who have had surgery or are undergoing treatment, this amazing young woman is currently writing a book filled with open letters from women to their breast cancer which she plans to sell to raise funds for NBCF Australia.
Elle has written a wonderful blog for us today describing her story and her relationship with her body.
“Like many women, I struggled to love, accept and appreciate my body just as it was through my teenage years and early twenties but when I was twenty-four, I started, slowly but surely, to build a healthy relationship with my body. I would look in the mirror and trace the curves of my waist, hips and legs with my fingers instead of squeezing the squishy bits in an effort to
essentially do what my mind wished I could do – rip them off.
The relationship with my body changed many times over the next few years.
I struggled but I was able to accept the changes so much easier than I could before because this body I was in was mine and nobody else in the world had one exactly like it. How cool is that?
After being diagnosed with a rare autoimmune brain disease at 25 I was put on a cocktail of medication to control the inflammation in my brain and spinal cord and to stop the disease from attacking my body. As many medications often do, these too came with side effects.
The steroids I had pulsed into my body intravenously over 3 days eventually led to me gaining 20kgs as well as developing Type 2 Diabetes and Osteoporosis.
I would look in the mirror at my puffy, acne ridden face and I didn’t recognise myself. I hated looking in the mirror.
None of my clothes fit me anymore and even those that did felt tight and uncomfortable but no matter how much I adjusted my clothes I couldn’t adjust the extra weight on what was essentially my whole body.
My skin burned and pulled from the stretching and I had deep, painful red and purple stretch marks covering my hips, inner thighs, inner arms and breasts.
It took a while but over time I would begin to feel these stretch marks with the same compassion and love that I felt my hips and legs before I started medication and gained this weight.
I started to dress up again instead of covering up, I found new and different ways to let my body just be and to encourage my mind to stop being so critical and to start being more comfortable.
It seemed that people around me were more offended by my body than I was, and this was conveyed in both subtle and not so subtle ways. I realised that I was living a very privileged life in many ways, but one being that I wasn’t judged or condemned because of the size or shape of my body up until now.
It became more apparent to me now than ever before how harshly people, especially women, are judged based on how they look, how much space we are told to take up in the world, both figuratively and literally and how uncomfortable people were with anything that was outside of the box of what is expected of a woman and her appearance. Stay small, in every way possible.
It also became obvious to me how quickly people make assumptions about your life based on the size and shape of your body. I knew my weight had changed purely because of medication but I also knew that even if that wasn’t the reason it changed, my body was nobody’s business but my own, and the reason it looks the way it does has absolutely nothing to do with the essential and important parts of what makes me who I am.
Now, keep everything I’ve just written in mind because every last bit of the story I’ve told you about learning to be kind, compassionate and accepting of my body and mind is about to change, almost to the point of non-existence.
It was Breast Cancer Awareness Month here in Australia. I noticed some symptoms in my left breast that were persistent for about six weeks but as most women do, I convinced myself it was nothing that needed attention, it was probably just because I was due for my contraceptive injection, it was hormonal, I even convinced myself for a little while now that it was in my head.
My experience when trying to get a diagnosis for what I now know is an autoimmune disease, was traumatic to say the least. I was told on multiple occasions by multiple specialists that my symptoms and my illness were “in my head” so, why would this pain in my breast be any different?
As I was buttoning my pants up just after the nurse had given me my contraceptive injection, I nervously babbled out what could only be explained as a ‘word vomit’. I told her all about the symptoms I had been having in my breast, why I didn’t have it checked, that it was probably nothing but please can you check it because I’m secretly shitting myself about it…
I have a long family history of breast cancer affecting my maternal aunt and two of my great aunt’s but I thought the separation in the family tree was enough branches apart for me to never be the one sitting across from my doctor being diagnosed with breast cancer.
Women my age don’t get breast cancer. Ah, to be young and naïve!
Fast forward to October 15th, 2019 and after an almost four week wait, a mammogram, ultrasound and two biopsies I sat across from my GP and had my world torn apart.
Here I was, 27 years old, barely a twig on the family tree, being told I had High Grade DCIS in my left breast.
I don’t feel like I’ve moved out of that day, it feels like the weeks and months in between that moment have moulded into one messy, traumatic and life-changing day that is broken up by meals and sleep. It has felt like I’ve just been existing, just moving through each minute but not feeling anything but the shock of the few words every woman fears.
In December 2019 I had a double mastectomy, three weeks after a lumpectomy with no clear margins. Between my double mastectomy and my lumpectomy, I had a massive 10cm of cancer removed from my left breast and I never had a lump.
I remember the pain when I woke up, both physical and emotional. It was deep and aching and I longed for my breasts. Part of me that nobody else in the whole world had was now gone and never coming back.
The loss of my breasts felt so much deeper than a physical loss and felt so much more than a loss only I was forced to bear.
I grieved the loss my parents must have been feeling, to watch the body of their daughter, a child they created together out of love, a body they watched growing from a child to an adolescent to a woman. A body my mother grew, and one both my parents held and nurtured for 27 years was now being taken apart so I wouldn’t be taken away from them entirely.
I looked at my sister, Grace, wondering what she must be feeling seeing her sister go through this. Despite my pain all I wanted to do was protect her like I have every day, month and year before I was diagnosed but now, I watched, feeling like I had failed her, as she was thrust into the role of protecting me.
I can no longer bring myself to refer to my breasts as breasts so instead I refer to that part of my body as my chest. Just as I did when I gained weight, I no longer recognise myself when I look in the mirror. I feel completely disconnected from my own body, and this time as much as I try, tracing lines over my chest is a fruitless exercise to show myself compassion or even get to know this new version of myself because I can’t feel my own
touch. I can’t connect.
I’ve had to meet and welcome new versions of myself so many times in the last few years, and the first few times I welcomed her with open arms, but now? I don’t know how to let this new me live without grieving. I don’t know how to feel like I haven’t been completely robbed, I don’t know how to feel anything but grief or anger. I don’t know how to be gentle or compassionate or even a little bit okay with this new me.
This new version of me continues to challenge me in ways no woman should ever be challenged and my heart aches to know that despite this, there are thousands of women just like me, all around the world, feeling challenged, defeated, broken and disconnected from themselves.
This ache, although painful, draining and at times all consuming, is the reason I will fight, forever, for every single woman before and after me with a breast cancer diagnosis because no woman should ever have to say goodbye to part of herself when they were just learning to say hello.”
Thank you so much, Elle, for sharing your heartbreakingly honest account of your evolving relationship with your body and your self-image. We felt every word.
You can find Elle on Instagram @breastiesforlife
Today we are delighted to share the third in our series of guest blogs. Please meet the lovely Lucy. Lucy has written a wonderful blog for us today explaining her experience following a single mastectomy and writes about how she has navigated explaining her treatment and surgery to her young daughter. You can find Lucy on Instagram @loobyloulu.
Lucy is an absolute hero in our eyes; she had a mastectomy at the beginning of 2020 and we can’t imagine what it has been like going through recovery while in lockdown. Lucy, you are amazing.
Here’s Lucy’s story in her own words:
“I’m Lucy, a single mum to a beautiful little monster called Millie. I love dancing, wine and fancy dress! They are the perfect combination in the right order!
In January 2020 I was diagnosed with breast cancer aged 32.
My initial thought was “I want a mastectomy straight away”. I felt like my body had failed me and I wanted the breast removed ASAP.
The operation went smoothly and as well as a single mastectomy I had a full auxiliary clearance on my right arm. Waking up with a drain and little to no arm movement was strange but you soon learn how to adapt.
The drain is exactly that, an absolute drain!! I had couple of issues with it, mainly because I got the tube caught on a door handle and so loosened it slightly….but a couple of dressing changes and it was good. The liberation and freedom you get and feel once it’s removed is joyous! I literally skipped out of the ward!
One of the most important things for me was to show my daughter Millie my scar straight away as I didn’t want her to be scared or worried about my chest. Five months and she’s just accepted it as the norm which for me is brilliant.
I was offered reconstruction surgery at the time of my masectomy but chose not to have it. I still have quite a lot of numbness across my chest and arm, especially in my armpit area. Gone are the razors in favour of hair remover cream!
I’m now at the stage of wanting to wear a bra again and I have to admit, it’s incredibly difficult to find any ‘nice’ post surgery bras, especially if you have small breasts.
For anyone who is facing the same surgery as I had, I agree it’s a really scary time but you will get through it. My biggest tip for auxiliary clearance – do your exercises! They are boring and sometimes a little bit painful but they work!”
Thank you so much for sharing your story, Lucy. It means the world to us here at Valiant Lingerie that we are able to share stories from amazing women like you!
It’s our absolute pleasure to introduce the next in our series of guest blogs. Please meet the wonderful Christen Williams who you may also know as BRCAchatter. Christen speaks very passionately about her experience of discovering she has a BRCA2 gene mutation on both Instagram and Youtube. She has produced some really fabulous videos explaining what BRCA gene mutations are and documenting her experience of a risk reducing mastectomy (and beyond!).
If you don’t already follow her, what are you waiting for?!
Christen has written a wonderful blog for us today in which she speaks about body image and feeling beautiful after surgery. Take it away, Christen!
“What makes you feel beautiful and sexy? Is it the skin you’re in, or the clothes you’re in? Can your clothes help if you’re unhappy with your body? The answer is yes – clothes and lingerie have a unique power to empower us.
In 2018, my surgeon said to me, “I’d be happy if you chose a double mastectomy, or I would be happy if you chose regular screening to catch breast cancer early… it’s your choice either way.”
I sat there thinking, “I’d be happy if you made the decision, Doc, save me the anguish!” But he could not, and I had a lot of thinking to do.
In 2015, after my mother died of ovarian cancer, I discovered I carried a rare genetic mutation of my BRCA2 gene. This meant that I had an up to 85% lifetime chance of developing breast cancer. Over the next few years, I would slowly learn to detach from the beautiful ticking time bombs on my chest and view all boobs in a whole new light… leading me to sit in front of the Doc and ponder my life choices.
A lot of us hate our boobs – some studies say up to 85%. Too small, too big, too saggy, too booby. I fell between love and hate. I loved their size (28FF), big and bouncy. I hated them without a bra. Big and droopy. As soon as I was told I could lose them, the love hate relationship amplified. I loved them SO much, don’t cut them off, and I hated everything they stood for – they had failed me. To lop or not to lop?
This decision comes down to body image, and how we view our bodies. It is not helped by the view of society, which sexualises women’s boobs. Boobs are used to sell cars, KFC, and squash. Yet women are battling across the world to breastfeed in public without being shamed and judged. Losing my boobs meant I would never be able to breastfeed. Was I thinking about that? Hell no. I was more concerned about having a boob reduction and losing my cleavage.
Many things swayed my decision to opt for the mastectomy. At one point, I casually said to my genetic counsellor, “Well, if my cancer is caught early, I can get rid of it.” And she just looked at me blankly and said, “Yeah, but you might die!” To the point. My second surgeon said, “You need to figure out whether your boobs are your biggest priority in life!” When you put it like that, it becomes boobs or death? It’s a no brainer, but that doesn’t mean it’s an easy decision.
I spent a lot of time living life, touching my boobs, staring at other women’s boobs. To be honest, I probably looked like a bit of a boob perve. When I put on a bra, I would mourn for its future loss in the bin. I made a big deal of going to Bravissimo and buying “my final bra” and “my final bikini”. Every time I went to yoga I would be doing the cow, cat or dog and admiring my boobs in my final sports bra. The mastectomy loomed over me, like a giant big-boobed elephant in every room I entered.
As I started to learn about potential complications of a mastectomy, I significantly lowered my expectations. When you hear about infections, tissue death and implant removal, suddenly size doesn’t matter, and a painless, quick recovery does. I prepared for the worst, so I could be pleasantly surprised when the worst didn’t happen. The worst never came for me; I was lucky (Doc says I wasn’t lucky, just young and healthy).
I would love to go back in time. Into all those rooms with the big-boobed elephant, and say to it, “You will love your faux boobs. ” (Foobs.) I would love to tell myself that I am the same size. Those final bras and bikinis I bought? I can still wear them. All those dresses? I can still wear them, even braless. I want to drift back to the past and reassure myself, and all other women waiting for a mastectomy, that you find a way through and you learn to love yourself again.
One of the worst things? Our choices of lingerie are somewhat limited. We are supposed to avoid underwire bras. Valiant saves the day here – I am so proud to support this company, which gives hope to all the foobilicious figures out there. In my old bras, I look the same. In my old clothes I look the same. But, new foobs require new lingerie – they needed to be celebrated for all they stand for. Life savers.”
Thank you so much for sharing your story with us, Christen.
You can find Christen on brcachat.com, on Instagram (@BRCAchatter) and on Youtube.
One of the most amazing things about the journey we’re going through at here at Valiant Lingerie is meeting you; the wonderful and inspiring women in this community. It’s really important to us that Valiant represents you and your stories.
With that in mind, we’re delighted to share with you the first in a series of guest blogs. Please meet Laura. Originally from Northern Ireland, Laura is a 35 year old educator living in Worcestershire with her husband and two young sons. A BRCA1 carrier, Laura is preparing for a double mastectomy and reconstruction having had her ovaries removed last summer. In November Laura will be trekking 100km of the Sahara desert with CoppaFeel to raise vital funds for this worthy charity.
You can find Laura on Instagram; @brca1_mum_
Without further ado, here is Laura’s story!
“I was 17 when my mum was first diagnosed with breast cancer. I was 28 when she was diagnosed with ovarian cancer. It was then that the doctors suggested gene testing.
I was aware of what this meant, my family had been through it on my dad’s side of the family where the BRCA2 gene mutation runs.
My mum, we found out, was a carrier of the BRCA1 gene mutation. I have had several family members suffer from cancer, and had seen up close the impact it had on my mum. It was a no brainer for me to undergo the gene testing when it was offered to me, even though I was 5 months pregnant with my first son at the time. I don’t know why but I had no doubt in my mind I was a carrier. I therefore wasn’t fearful of the result, but instead looked forward to it being confirmed so I could start the early monitoring and testing offered by our wonderful NHS so I could take control before cancer got a chance to take hold of me. Needless to say I tested positive, the only one to do so out of myself and my three siblings.
And so began my journey as a BRCA1 ‘previvor’. I’d never even heard that term before I started following BRCA carriers on Instagram. There’s a wonderful community of support on those little squares. They’ve been a lifeline to me on my down days.
I had my first MRI in Spring 2015, a few months after my son was born. The breast tissue in women under 40 is too dense to pick up changes through mammograms so MRIs are offered instead. Lying face down in the MRI machine that first time was daunting. Actually, if I’m honest, it still is daunting!
It was much noisier than expected and lying there I began to panic that I would react to the dye when it was injected. Health anxiety is a recurring theme in my life and something I have worked hard to overcome. I mostly have a grip on it now, but every so often it rears its head. Lying in the MRI machine I took deep breaths to calm myself. Turns out those deep breaths made my body move too much so I had to start the scanning process all over again.
In the 4 years that followed my diagnosis I gave birth to my son, had my annual MRI, moved house, had my annual MRI, suffered a missed miscarriage, discovered I had a benign tumour on my kidney (angiomyolipoma), had my annual MRI, gave birth to my second son, was diagnosed with PTSD, started a new job, in fact, a new career.
Then in the spring of 2019 I went for my annual breast MRI. Only this time I was invited back, urgently. They had found a lump. It was buried deep in my breast tissue so I would never have found it myself.
The doctor explained it may very well be nothing to worry about, but they needed to be sure. I immediately had a mammogram, an ultrasound and a core needle biopsy. This involved using a needle to take a sample of the lump for testing – a process which was uncomfortable and painful, made all the more difficult because it was buried so deep. They also placed a clip on the lump so that in future scans they could track the growth and movement of the lump.
Then followed the two week wait for the results. The longest two weeks of my life! I was convinced I had cancer. I had the gene. There was an 85% chance I would develop breast cancer in my life. This lump was anything but innocent.
As luck, or maybe fate would have it, it was a harmless lump. A fibroidanoma. But that was it, there was no way I was putting myself and my husband through that stress again. So I decided now was the time to move forward with my preventative surgeries.
In July 2019 I had both of my ovaries and fallopian tubes removed. There remains a risk that cancer can develop in the peritoneum, but this is small.
At 34 I was in menopause. In Autumn and Winter 2019/20 I began the preparations for a double mastectomy and reconstruction. I met the plastic surgeon, had my photo shoot (as glamorous as you would imagine!) and met with the psychiatrist.
I was set to have my surgery in Spring 2020. And then coronavirus landed. Nothing like a global pandemic to throw a spanner in the works! And so my non-urgent surgery was put on the backburner whilst the NHS focussed on managing a pandemic. Fair enough!
Within days of realising my surgery was off I discovered I’d been accepted to embark on a CoppaFeel charity trek – 100km across the Sahara! I’d applied on a whim after a glass (or 2!) of wine. I can’t even really remember what I put in my application! So, it might not be the challenge I was expecting in 2020, but there is no doubt this trek will challenge me. Anyone who knows me knows I hate the heat and suffer from anxiety. Can I really manage 5 days trekking through the desert, in blistering heat, with no communication with my husband and sons? I’ll have to! I’ve paid my deposit, and, more importantly, family, friends and kind strangers have sponsored me to do so. I won’t let them, or myself, down.”
Thank you so much for sharing your story, Laura. We can’t wait to follow your journey as you prepare for your trek. Please do head over to Laura’s Instagram to learn more about this challenge and how you can support her.