Meet Vicki; a BRCA2 previvor who will be trekking the Sahara for CoppaFeel!

Every day we’re grateful that we have the chance to meet and get to know some of you; the wonderful ladies of Valiant! And we are proud to have the opportunity to share your stories.

Today’s guest blogger is the amazing Vicki (aka @route_to_previve). Vicki had a bilateral mastectomy with direct to implant reconstruction in February 2020. She says that, after years of uncertainty over the timing of her operation, she feels very fortunate that her surgery went ahead and wasn’t cancelled due to Covid 19. Vicki says that “2020 is going to go down in history but for me it will always be the year I swapped my nipples for scars and dramatically reduced my risk of breast cancer.” 

Here’s Vicki’s wonderful guest blog:

“I was 26 when I first found out there was a 50/50 chance I had inherited a BRCA2 gene mutation from my mum and shortly after I had my first appointment with the genetics team. During that appointment I was told that if I was to get tested straight away I wouldn’t be offered screening until turning 30 and that I should consider completing my family first (I already had my daughter).

If I had been told that now I would have gone home and done lots of research but maybe I wasn’t quite ready to accept the reality of a positive test result back then, so I did exactly as advised – I had another baby and waited until just before my 30th!  

Having a 50% chance of being at high risk of cancer is a big thing to have hanging over you for a few years. It triggered anxiety, a very unhealthy obsession with checking my boobs (at my worst points, a few times a day) and several visits to the GP and a visit to the breast clinic with various concerns about my boobs.  

When I received the phone call to tell me I had tested positive I already knew I wanted a preventive mastectomy and began the consultations straight away.

As my potential surgery date got closer I made the decision to postpone because my son was still little and I was really worried I wouldn’t be able to give my body the time it needed to recover properly.

Looking back I’m not sure it was the right decision and it had a terrible effect on my mental health but when it comes to BRCA there is no right or wrong choice. You have to follow your gut and in that moment it felt like the right thing to do.  

I visited my GP in January 2019 for a referral back to my surgeon however due to an admin error I didn’t get an appointment with him until the December.

Feeling 100% ready for surgery but being completely powerless to do anything about it was really hard especially knowing there would be another 8 or so months wait once I got put onto his surgery list.

At my appointment I burst into tears as soon as my surgeon walked in, uncontrollable barely able to talk tears, relief that things would start to move forward mixed with frustration that it had taken so long to get the appointment.

A couple of weeks later I got a call with a surgery date for 6 weeks’ time as I had been put on the urgent list. I was extremely grateful that I wouldn’t have another long wait but absolutely terrified it was happening so soon.  

The next 6 weeks was a complete emotional rollercoaster; from “bye bye boobs” bottomless brunch and a final photoshoot, to tears and therapy. However, the last few days before my surgery I felt surprising calm, after years of saying “one day I will have a double mastectomy”, it was finally happening!  

BRCA has taken my boobs and will soon claim my ovaries too but it has given me a love and confidence for my body that I’ve never had before, incredible new friends, a passion for fundraising and amazing opportunities. I am very lucky to be part of the team trekking 100km across the Sahara Desert for CoppaFeel! next March.

Instagram has been such a powerful tool in my journey. The support and understanding from the BRCA community is incredible. Christen (@brcachatter) sharing her post op photos gave me the first insight into what to expect from my own surgery and Kim (@nipplesoptional) who met me for coffee, answered all my pre op questions and has been at the end of the phone for support ever since.

My friends and family have all been really supportive and I’m truly thankful. But they can never understand in the same way as someone who is living with BRCA and that’s why I decided to share my own story on Instagram in the hope it may help someone else the same way others have really helped me.”

Thank you so much, Vicki, for sharing your story with us. We completely agree with you; the support and understanding from the community is amazing. And we hope that by continuing to share our stories we are helping someone out there to feel less alone.

Introducing Tracy; Chief Flattie and Boobless Thrifter

The beautiful Tracy aka @goingflat

Can you believe it’s Friday already? It’s very nearly the weekend and we have another fabulous guest blog for you today.

We’re so excited to introduce Tracy who describes herself as Chief Flattie and Boobless Thrifter. Tracy was diagnosed with stage 3 breast cancer in 2007 when she was 37. Her mission now is to support women on their post-mastectomy journey to find their fashion voice and feel great about themselves again. As you can imagine, this mission appeals to us here at Valiant!

You can find Tracy on Instagram @goingflat, on her website here or by e-mail at goingflatfashions@gmail.com.

Without further ado, here is Tracy in her own words:

“What is beauty?

In so many ways, our perceptions of beauty are defined by the external. Media, culture, people we know, and people we don’t know tell us what is beautiful. And tell us what we should find beautiful in our own selves and in others.

When things related to our external selves start to change – we get a few new wrinkles, we gain some extra pounds, we get a bad haircut, or we undergo a surgery or trauma that changes our appearance – we look in the mirror and this detail sometimes leads us to think we are less beautiful.

When I had my explant surgery, after 5 years of living with implants after breast cancer treatment, I had the opposite experience. I looked at myself in the mirror and thought I looked BETTER. Not only was this unexpected, it was life changing. And it ultimately led me to start my current post-mastectomy beauty and fashion project, Going Flat Fashions.

To understand where I’m coming from: I was an awkward child, an “artsy & weird” teenager, which evolved into a “quirky & cool” adult. I always thought I was “fat”, I always thought my body looked wrong in everything I ever put on, and I always, always, always wished I looked like someone else. I wanted to look like Debbie Harry, or Patti Smith, or Uma Thurman. My hatred of my body from the outside led to a pretty serious hatred of myself on the inside. Full disclosure.

When I “went flat”, it was a surprising liberation from the baggage of my body, and all those years of body issues. Being rid of half a decade of pain from having the implants probably didn’t hurt, either. To celebrate my new shape, I went shopping…a lot. I’ve always been an avid thrifter, and with this new body joy, I hit the thrift stores with a mission!! I started to love wearing clothes and experimenting with fashion. And most importantly, I started to really love myself. I still have my down days, but my general overall feeling about myself is that I really am beautiful.

As I discovered my own beauty, I encountered so many women online and in person who had gone through mastectomy surgery who were bogged down by the beauty myth. Years of trying to accept their bodies before mastectomy, compounded with the new reality of coming to terms with the surgery, was taking a huge toll on their self-esteem.

I felt like I could do something to help. I wanted to give back to the community, and to use my experience to send a message that the definition of beauty is wide and inclusive. In response to what I saw as a big need in the community, I started Going Flat Fashions in October of 2019.

Going Flat offers virtual personal wardrobe styling services and a thrifted clothing experience catered to women who opt-out of reconstruction. My mission is to help guide women on their post-mastectomy journey to finding their new fashion voice, and I’ve created a safe space for them to reimagine their new post-op life. I provide wardrobe styling services on a virtual platform with curated, vintage, consignment, and thrifted clothing selected specifically for women who have chosen to “go flat” after mastectomy. The site and the services are open to flatties and non-flatties alike.

I feel like I’m empowering women and helping them love their bodies no matter what the shape. After mastectomy, women are told that ‘clothes won’t fit them properly’, that they won’t be ‘sexy or desirable’, and I want to help them understand that this is truly not the case.

Through my work with Going Flat Fashions, I have unwittingly become an advocate, and a source of support for the women who benefit immensely from the experience, gaining confidence and taking steps toward reclaiming their bodies after surgery. It is an amazing feeling to help others in this way, and I look forward to working with more women in the future to help them feel and look beautiful.”

Thank you so much, Tracy, both for your wonderful blog but also for everything you do to support other women in feeling good about themselves post cancer and post surgery.

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Meet Joanne who writes about cancer in a time of coronavirus

The wonderful Joanne (@reallyratherannoying)

We have another amazing guest blogger today. We’re honoured to introduce Joanne. Joanne documents her experiences living with secondary breast cancer on Instagram. You can find her at @reallyratherannoying.

Like so many in the cancer community, Joanne has spent much of this year shielding and she has documented her feelings throughout – on the good days and the bad.

Joanne has written a wonderful blog for us today in which she explains what it is like living with cancer in a time of coronavirus and what that has meant for her.

We hope you find Joanne’s blog as powerful as we did. We know that this year has been very difficult for so many but Joanne has so beautifully expressed the fear and uncertainty of so many brave people in this cancer community. Here’s what Joanne has written:

“I swear a lot these days. I didn’t used to but now all the time in my head and too often in my speech.  I grew up in a house where no one swore, the first time I said sh*t I was ten, I didn’t know what it meant I’d heard someone at school say it so I thought I’d try it out. My mum was horrified, I cried, I never swore again until just recently. I blame cancer……and coronavirus.

I’ve had cancer for three years, well probably longer but undetected. Secondary or metastatic breast cancer, that’s were the cancer has spread from the breast to other parts of the body. Mine is in my bones and stomach lining. Because of the nature of my cancer I’m able to take a reasonably new drug called Palbociclib. I’m lucky it’s worked for three years with relatively few side effects and I’ve led a relatively normal life. I’ve seen my two children graduate and hopefully next year my step daughter, I’ve got married, travelled to Europe, Africa, Asia and Australia. I’d probably have been to the USA too if they didn’t have that overly weird president. Life was, well not great let’s face it who wants uncurable cancer but it was as good as I could make it.

Then something happened in China that turned mine and, too be fair, the whole worlds’ lives upside down.  Coronavirus, Covid-19, call it what you will it’s a damn nuisance.

In April as the whole country was in lockdown I sat by the phone nervously waiting for the results of my latest CT scan. Would the cancer still be stable? I’d already outsmarted the average time on Palbociclib so every three months the wait for results became increasingly anxious.

The call came in, still stable BUT….It was a big but, the breast team, having reviewed my medication and general health in the wake of the global pandemic, decided that I should take a three month break from the medication. They had weighed up the odds and given my propensity to low white blood cells agreed that the risk of my cancer growing was less then the risk of my catching and recovering from coronavirus. I was devastated and extremely nervous, feeling I was being asked to put my three years of stability and hope at risk but what could I do?

Reluctantly I agreed, treatment was paused and I started on a new regime of taking Letrozole, my other cancer drug, alone and just hoping I would stay safe. Two weeks later my worst fears were realised as I started to get severe pains in my right hip and pelvis. Over the next couple of days the pains became increasingly bad, I could no longer sit comfortably or indeed walk.

I rang the Christie hotline and minutes later was taken by ambulance to my local A&E, not exactly were you would choose to go in a global pandemic with a compromised immune system. I was admitted onto a ward for investigation without a coronavirus test, that didn’t seem right but when I queried it I was told by the ward nurses if I didn’t get one in A&E they wouldn’t be giving me one – WOW. I just hoped no one else on the ward had it.

For two days I had scans and X-rays , checking for spinal compression or broken bones but nothing appeared out of the ordinary, apart from the pain which was managed to a reasonable level by my old friend morphine. With no visitors allowed the only possibility of banter was with the nurses, too busy chatting about tik tok, the patients, too old to hear me or the people delivering the food, who claimed tuna bake was suitable for vegetarians. Thank goodness I’d had the foresight to pack my kindle and phone charger!

The tests revealed nothing untoward so I was released back home with a bottle of morphine and absolutely no idea where that pain had come from.

For days nothing changed still sore, couldn’t walk properly, couldn’t sleep and the morphine made me so miserable I was swapped onto a synthetic alternative.

I madly researched what it could be. Then I read stories of ladies having terrible joint pain on Letrozole, could this be the cause of my issue? Was the Palbociclib masking these unwanted side effects?

Turns out there are a number of different brands of Letrozole, ranging from the current ones I was taking at £2 a packet to the crème de la crème at £90.

My wonderful GP listened to my reasoning and agreed to prescribe the crème de la crème and the results were surprising, over the next few days the pain subsided walking became easier, all be it at first with a stick and I started to sleep.

I had another CT scan and waited anxiously for the results, hoping for the best but fearing the worst. The results came via phone call, I was still stable, I could barely believe it and better still could start back on my Palbociclib and even better I could slowly come out of shielding and start to meet with friends and family I’d not seen for four months.

Life was great for sixteen hours. Then my daughter texted me, the virus cases in Greater Manchester were rising to a dangerous level we were being told to stop socialising in our homes and even our gardens. What the hell? I’d not even got to that yet, the news was devastating, hopes of slow return to the “new normal” dashed. You could not make this year up!

But as I sit here today on a chilly bank holiday weekend we have been released from these extra restrictions and by Wednesday will able to have friends round again albeit under the social distance rules. I’ve survived those horrible three months, but who knows at what long term cost to my health? Many who’s cancer treatment was paused or diagnosis delayed face an uncertain future, many cancer patients will die needlessly as a result of the restrictions of the pandemic. As we all move towards our new normal let’s not forget those who have suffered and continue to do so.

Follow me on Instagram @reallyratherannoying because let’s face it that’s what life with cancer is.”

Thank you, Joanne, for sharing your story and explaining the far reaching impact of coronavirus on so very many lives.