As I sit down to write this blog, I can't help but reflect on the whirlwind of emotions and challenges that have marked my journey through breast cancer.
It's been a rollercoaster ride of physical pain, emotional turmoil, and moments of profound insight. And it is far from 'over'.
Almost 4 years ago, in September 2020, in between lockdowns, remember them? I received the devastating news of my breast cancer diagnosis.
I'd found a lump at the end of August. Due to my age, at the time, I hadn't yet been invited for routine breast cancer screening.
Suddenly, my world seemed to come crashing down around me as I struggled with the reality of facing this life-altering disease. Cancer is a scary word, and to say I was scared is putting it mildly!
I can still hear my Oncologist's words "I'm sorry, but your breast is riddled with cancer". I'll never forget those words, that were shortly followed by "It's a threat to your life, do you understand?". So, in that moment, I was faced with a stark choice, mastectomy, or die. I had to make a decision quickly too!
Within a month of my diagnosis, I found myself undergoing a single mastectomy, a surgical procedure that would forever change my body and my sense of self. No one prepared me for it, and it hit me like a ton of bricks!
I remember hating my body, and was unable to look in the mirror for a long time, without feeling angry, horrified and deeply upset. I'd opted for a DIEP reconstruction, which is where the surgeons take part of your tummy, back or thigh, to basically make a new breast.
I was told that this reconstruction would happen within about a year. Indeed I was told that "nobody waits longer than 18 months". Well, guess what? It's been over 3 years, and I'm still waiting for a date for my reconstruction. Unfortunately, because of the 'backlog' during Covid, I've been told the delays are significant. Leaving me in this sort of 'limbo land' of living with half my chest missing.
The physical toll of cancer treatment is undeniable. The surgeries, the chemotherapy, the radiation – they all take a significant toll on the body.
But what often goes unnoticed is the impact of cancer, on our mental health.
For me, the psychological scars of cancer have been just as profound as the physical ones.
In fact, I'd argue, a lot more difficult to manage, and 'manage' is something I thought I was doing well at the time. It was like an out-of-body experience. I find it hard to describe accurately. Suddenly, and without warning, around 6 months post-mastectomy, I found myself struggling with overwhelming anxiety.
I was having day and nightmares, with horrific vivid hallucinations. I liken these 'visions' to me watching my trauma, played out in front of my eyes, a horror movie scene, with me as the main 'star'. Though I hasten to add, one cast against her will. The hallucinations were a mixture of what did actually happen to me, alongside things that didn't, it was something I can only describe as torture.
In March 2021, following a total mental breakdown, I was diagnosed with PTSD, Post Traumatic Stress Disorder. The fear of cancer returning, the uncertainty of the future, and the trauma of the entire cancer experience, had all become too overwhelming. I'd wake up feeling unable to breathe, my heart racing, and often, at times I didn't even know where I was. I started to feel like I was losing my mind entirely!
What might surprise you, is that I was offered no support for my mental health from the beginning of my cancer journey, right up until the point of my breakdown.
Even when I was diagnosed with PTSD, I remember speaking to my Oncologist at my first annual mammogram, post my mastectomy. Explaining to him about my diagnosis, his response was, that he was surprised because I was "remarkably coherent, clear and calm" when I was telling him.
It was only through my own professional knowledge, advocacy and initiative, that I was able to search for and access the mental health resources I so desperately needed. With over 23 years of experience in the mental and physical health field, I knew where to turn for help.
But what about those who don't have the same knowledge or resources? It's why I use my voice as a motivational lived experience speaker and as consultant, to raise awareness, and highlight the urgent need for better integration of mental health support into cancer care.
Navigating the link between mental and physical health
I firmly believe that mental health should be treated with the same level of importance as physical health in cancer treatment. In fact for all physical health conditions. What affects us physically can and does affect us mentally, and vice versa.
That's why I advocate for mandatory training of all physical health staff in cancer and mental health awareness.
My journey through breast cancer has been one of the toughest challenges I have ever had to face, and this is why I say that surviving breast cancer is just the beginning.
I also live with chronic pain, and multiple disabilities, one I was born with called Bertolotti Syndrome, but that's a whole other blog!
Despite these challenges, I've emerged stronger, more resilient, and more determined than ever to advocate for better support for those facing similar struggles.
Despite being called The Pink Haired Warrior, I am always open and honest about sharing my personal lived experiences.
I do have moments where all I do is cry. Because it's like a form of grief. I am mourning the loss of the body I had, the life I had, before cancer.
I am pleased to say that at the end of 2023, I was discharged from my NHS psychologist, having undergone quite a tough period of EMDR therapy (EMDR is Eye Movement Desensitisation and Reprocessing). This therapy was recommended for my PTSD, and has really helped me.
There are lots of resources available for those going through cancer, and one that I'd recommend, is called The Hub of Hope. It's a great place to start, as you can search for all kinds of different support using keywords, and your postcode.
Cancer and stigma
According to Cancer Research UK, 1 in 2 of us will face cancer at some point in our lives.
That's potentially 50% of your work colleagues, family, friends or neighbours.
Despite this, rarely anyone talks about it, because cancer is still considered 'a taboo topic'.
It might surprise you to learn, that around 71% of workers with cancer in the UK fear telling their colleagues about their diagnosis.
This is why I leverage my lived experience, to raise awareness, smash stigma, and break down barriers. I support businesses and organisations, so they can have proactive, supportive, and constructive cancer conversations.
As a motivational speaker, I share my story in a way that connects with audiences from all walks of life. Because people relate best to people who have lived experience.
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About Melaine Costas & the Speakers Collective
If you are interested in Melanie Costas speaking at an event or providing training please contact info@speakerscollective.org.
Speakers Collective is a Social Enterprise. We work together with a shared commitment to challenge stigma, facilitate important conversations and promote learning on a variety of social issues. Please do contact us via info@speakerscollective.org or call 020 8123 8250 with any enquiries.