By Alex Ramsden at the Oxford Lymphoedema Practice To explain lymphoedema it is really necessary to start with the lymphatic system and what it does, which will help to explain why cancer treatment can upset this system and cause lymphoedema. Everyone has a lymphatic system. …
Month: August 2020
In this week’s guest blog, the very lovely Emma talks about the importance of raising breast cancer awareness, supporting younger breast cancer patients and those who are part of the BAME and LGBTQ+ communities…
When you’re diagnosed with cancer there’s a starter pack. No, I’m not taking about the Macmillan ones listing treatment options and explaining the medical jargon. I’m referring to the one for when you get the ‘I must raise awareness and save humanity’ feeling. It involves some kind of fundraiser either held by your friends and family or yourself in the future, and comes with a social media blog. It’s a declaration to share it all so everyone becomes more aware of their body and symptoms.
As much as I sound like Judge Judy, honestly I’m not! I did it too.
I’m Emma and when I was 24, I was diagnosed with breast cancer. Everyone was stunned and terrified due to my age. If had a pound for every time someone told me that I was too young or for every message I received from one of my peers panicking because they didn’t know our cohort could get breast cancer, the signs or how to check their boobs…I’d be living in a luxury ocean villa on an island in the Maldives.
But my diagnosis was a shock for me. I’d owned a Coppafeel shower symptom sticker by the bath and had been checking my boobs for years so knew them better than the back of my hand. It meant I knew immediately that my normal had changed and to act as soon as possible. Because of that, I was diagnosed early and curable.
My peer’s reaction to my diagnosis showed me that I had to make use of that aforementioned pack, I possessed knowledge that greatly increased my survival chances, other’s needed that too. I contacted my life savers, Coppafeel, explaining their role and asked for a few shower stickers to send to my friends. They posted 100.
At this point, awareness was about arming other young people with information to potentially save them. Along with sending shower stickers out to friends across the country and handing them out to strangers (even at the bar), I signed the book of the beast: I began a blog, over-shared on Instagram and declared to bare my soul.
I stuck out like a sore thumb in hospital waiting rooms – everyone else was posher, straighter and much older than me. It was incredibly isolating (even two years post diagnosis, at 26, I am still at least half the age of the average patient, still not posh and certainly not straight) but quickly I discovered a community of other young adults dealing with cancer online and it helped ease the loneliness. We all wanted the same thing: to raise awareness while the lab coats looked for cures. Finding more members of our exclusive club give me friends taught me a few things about awareness, that it goes beyond symptoms and needs to be more than posting a picture of a ribbon with hashtag or those incredibly annoyed Facebook messenger chains.
Finding GIRLvsCANCER, founded by Lauren Mahon, showed me that I needed to do more than post online about my experience online if we wanted to combat the common feelings of isolation that many young people report. Us young ones needed to be the information packs and other materials around cancer. If I wanted change, I had to be it offline too and use my voice to gift someone the realisation that they aren’t alone like Lauren gave me. So I opened myself up to another layer of baring my soul for public judgement in allowing charities and the media publish my story, and being involved in national awareness campaigns. Showing a younger face with cancer shocks the general public into paying attention and sticks in their mind with the potential to not only help others like yourself feel seen but remind the non-diagnosed to check their boobs or visit the GP about that bit of blood in their poo. Two birds, one stone!
Listening to Saima Thompson and Leanne Pero, my fellow cancer club members, taught me about the racial inequalities within out health system and lack of diversity in cancer-related material. Knowing that the BAME community are more likely to diagnosed late because lack of representation is sending them a message that cancer is a white disease and other cultural factors, forced me to confront my own privilege as a white woman. I might not see many young and/or queer people like me in material but I definitely see a lot of white women. Awareness is more than signs and symptoms, it is about revealing the truth to all that cancer doesn’t discriminate; if those cells want to grow, they will grow. It is about shedding light on the unique needs of minorities to meet them and tackle the isolation they cause.
The work of Saima, Leanne and Lauren has empowered me in my practice of awareness and motivated me to continue blogging about cancer-related issues, particularly highlighting the experience of those who intersect both the cancer and LGBTQ+ communities (like myself) that are being for-gotten and ignored. It has made me more mindful about awareness…well actually whether some-thing really is awareness. Every Breast Cancer Awareness Month we are inundated with products dyed pink, pink ribbons and percentages to charities, but unless they come with at least the basic information about checking your boobs are they actually making anyone more aware about breast cancer beyond they fact that it exists? The imbalance of types of cancer types being given the spotlight in the name of awareness is also something we need to tackle.
For awareness to be truly impactful, it needs to grab people by the scruff of the neck and educate them about something that people wouldn’t even say aloud 50 years ago. Cancer survival rates have doubled in the last 40 years (Cancer Research UK) making the need to include the issues that come with a cancer diagnosis and treatment in cancer awareness all the more important for our quality of life. It is empowering people with information about symptoms, correct vocabulary, the need to be aware of their bodies and what to do if they’re concerned about something. It means we must force people to face the reality that it could be them next. They are not immune.
With it predicted that 1 in 2 of us will be diagnosed with cancer in our lifetime (British Journal of Cancer) it is increasingly important that we show them a reflection of themselves and accurate in-formation. Because awareness, at its root, isn’t about partnerships, products and ribbons. It’s about lives, lives like mine and maybe your’s.
The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.