We have another fabulous guest blogger for you today.
Sarah was 31, with a six-week old daughter, when she was diagnosed with malignant melanoma. Over the last four years she has had countless scans, multiple surgeries, radiotherapy and immunotherapy... Oh and a divorce. Sarah says that it was when things felt darkest, just prior to being confirmed stage 4, that she realised she needed help. She explains that, with the help of coaching, she had a fundamental shift in her perspective which allowed her to feel better than ever before.
Sarah says that she began to understand that she wasn't defined by her situation: "I finally felt positive and connected to my body and able to love life again; a gift I now work to share with others. Not to help physically but to have a less stress experience of cancer. I am also working to change the way we talk about cancer moving away from language that infers personal responsibility; its not a fight to be won or lost. It's a shitty process, that more often than not feels like a roller coaster with no end in sight."
Sarah has written a wonderful blog for us today on the subject of body image and trust. Take it away, Sarah!
"What do we think of our bodies and does it even matter?
Once upon a time and not that long ago I had a real rant about the toxic positivity messages around body image. I felt like the rhetoric was to force positivity onto how we feel about ourselves regardless of what we think.
Now I am going to be very honest. I have never struggled with my weight; neither have I ever cared particularly who sees my body. I was blessed to feel powerful with my pregnancy thighs rather than ashamed. In some ways I feel I am not qualified to write about this; being a ‘skinny bitch’, but then maybe I am…
From gawky teenager into adult hood, I have mostly ignored my body. Occasionally, or rather frequently if I am honest, used it to gain attention or approval, especially from older men. Using it to get things done. Please people.
However, my whole life I have struggled with my skin, and this is before it tried to kill me!
I have the sort of skin that is so white that I sometimes look blue, but not that smooth alabaster type of white skin, oh no, I have freckles moles and scars (even before cancer) and dark hairs that are still visible after shaving. It’s also so sensitive that certain cosmetics give me rashes and spots. My mum even had to bin any soaps I was given as a kid.
Then it tried to kill me. A rogue mole grew and itched, I had it cut out, but it snuck into my bloodstream and made multiple homes around my body. At first these were cut out and then I undertook a systemic drug treatment to help my body fight the cancer. Immunotherapy is amazing, it doesn’t kill the cancer cells for you like chemo or radio, it confuses your body into attacking them itself. I found this fascinating. I, by which I mean my immune system, had always had the power to destroy the tumours and heal, it just needed that kick in the butt.
Beforehand I felt indifferent and a little critical of my body, then in the space of two years, I had my first child and three surgeries, one in particular leaving a very ugly scar down my arm. As a result, you’d think my opinion of my body would be lower, but no, I am able to revel in my body in a way I had never before felt possible, I could not care less what my skin looks or feels like, because it’s mine. And I want to tell the story of how this happened.
I had just been discharged from hospital having been given a walloping dose of steroids for side effects. I was covered from head to toe in a rash that was itching like dozens of mosquito bites, it started out red then developed deeper purple patches below the redness.
Standing in the shower staring down and my thighs and feet I gave way to the fear that had been slowly building in me; that my skin might not heal, and I’d always be blotchy.
As I looked down, I wanted nothing more than to see the skin I had always loathed. In that moment in the absence of it, I got to see the truth about my skin. That it was beautiful in its own right. I saw all the joy and closeness to my mum I had felt as a child from our shared skin type. I saw all times it had healed and repaired itself. I felt every hateful thought I had ever had about my skin well in my eyes. And as I cried, I saw how beautiful it still was, all red and sore but whole. Whole and healing.
I saw that my body is mine. It’s filled with my memories, my joys and pains, my desires and criticisms. But it is mine. And it’s the only one I have. Or am every going to have. So I loved it. Tumours and all.
But rest reassured I am never going to ever tell anyone else to love their body, because I know how that sounds.
What I want you to know is that love is a thing that comes in spite of judgment, or with it or because of it. Love is just there underneath whatever you think about yourself, its resounding and quiet, completely invisible but you may catch a glimpse.
So, this is my advice; trust that. Trust the love that rattles around inside your body no matter how it feels. Trust that the love you see pouring out of others, pours out of you too. And think a little less about everything else."
Hello everyone! Please extend a warm welcome to our latest guest blogger.
Gina has written a wonderfully insightful blog for us today about her experiences of having a single mastectomy with immediate reconstruction and the resources she found helpful in reaching decisions about what was right for her.
Here's Gina's story:
"My name is Gina Davidson, I'm 53 and I live in Northumberland. I moved north 23 years ago; a decision my husband and I made when we were expecting our first child as his family are based up here. I love the culture, the beautiful coast line, the ruggedness of the wide open spaces and it is the least densely populated county in the country - which suits me just fine!
My husband and I have 4 children; now aged 23, 22, 20 and 19. They are my world and give me a reason to stay positive.
I work full time for the local authority, ensuring children and young people maximise their opportunities for education. I am currently not working though as I am recovering from surgery - I have had my partially reconstructed breast removed and I have chosen to remain flat.
I was diagnosed with breast cancer in May 2019 and had a single mastectomy with immediate reconstruction. I hated the way it looked, the way it felt and the way it made me feel.
At the time of diagnosis, all the options for reconstruction were laid out for me and no discussion was had about the possibility that I may choose to be flat - who would choose that when surgery has come such a long way?
But I knew, as soon as I came round from the anaesthetic, that I had made the wrong decision.
After many many meetings with my surgeon and health psychologist - they finally agreed that to remove it was best for ME. I was due to have this surgery in May but because of COVID 19 it was postponed.
It was then that I started researching and looking for others experiences and opinions. Whilst I know many women who have been through breast cancer, most had had a lumpectomy or had had reconstruction surgery ( along with all the other stuff ie radiotherapy and chemotherapy) and were completely happy with the results of their surgery. But, although these women were wonderfully supportive, I didn't feel that I knew anyone who was struggling in quite the same way as me. I took to social media and found many supportive communities out there and yes it was ok to feel the things I was feeling and it was ok to choose to be flat!
@FlatFriendsUK is an amazing group that wholly supports women without reconstruction with lots of lovely ladies sharing experiences and anecdotes so that women can come together to talk about the practical and emotional issues related to living flat. I heard from another group about 'in your pocket' - a phrase that signifies empathy - I absolutely love that phrase.
@thetittygritty, who fronts the #changeandcheck campaign, has many supportive followers and she hosts live discussions about all sorts of cancer related issues in an extremely safe environment with lots of humour thrown in for good measure.
Through these communities, I have really improved my awareness and knowledge of what was happening to my body and knowing there were others out there like me boosted my confidence to start doing guest blogs and I was even interviewed for the Lorraine show (my 30 minute interview was cut down to just 30 seconds haha!)
Another community that has really been inspirational to me is @MastectomyNetwork founded by @mastectomyjay. Her 'Become Visible' campaign that ran in October for Breast Cancer Awareness month, was devoted to increase the awareness of ladies with a mastectomy and to give us a voice and a platform to share our experiences. It has been fascinating to learn, through this community, of the stigmas we live with imposed on us by society; we should look a certain way as women.
The Become Visible campaign involved courageous women sharing photos of their scars on social media. No names or faces were used. Unbelievably, some of these were taken down as they went against 'community guidelines' on nudity and sexual activity.
These images are not sexual at all - they are powerful and inspiring. I featured in one one of them - it was incredibly liberating - no one knows what is going on under our clothes but these photos made us visible.
For the first time in over 18 months, I am beginning to learn to love me again - to feel confident and sexy. With just 1 boob. Today I was at the hospital yet again to get my foob. I don't feel I need to wear it as I am quite happy as I am but I feel I need the option in certain situations, so that others don't feel awkward around me. Some don't understand that when I have elected to be flat, why do I want a prosthesis - I cannot explain but I just do.
I have posted a lot on social media sites about my journey, which after today, I feel is finally coming to the end ( disregarding horrible hormone therapy for ........... years and 6 monthly check ups with my oncologist ). Some have commented on my posts or sent me private messages and if just 1 person is helped through this then my experience will be a slightly more positive one. I will continue to fund raise for Breast Cancer Now and will constantly shout about #changeandcheck.
Cancer no longer defines me like it did, but I will always be a BC survivor and now I wear my scars with pride - a badge of honour so to speak - a statement to myself that I can overcome and thrive. I will continue to support others by making sure women feel supported and have a voice to make decisions about their treatment that can be life changing.
As an end to this, this is the 3rd guest blog I have written ( the others can be read on my Instagram page: @ginalouisedavidson). This one is very different to my last ones as I am in a very differnt place both mentally and physically right now - thanks to the support of family, friends and the whole BC community. No one is alone x"
Thank you so much for sharing your story with us today, Gina, and for sharing these incredible resources which have been (and continue to be) so valuable to so many.
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.