What does ‘awareness’ really mean?

On the last day of blood cancer awareness month and the eve of breast cancer awareness month, I am wondering what awareness looks and feels like?

Less than two years ago I didn’t know what Acute Myeloid Leukaemia was, never mind its symptoms. I first became aware of it when our good friend Gemma Thomas was diagnosed with it. I received the call out of the blue to say she’d been diagnosed and was going to have chemotherapy.  For those of you following the story in the media you will know that 3 days later we received the tragic news that she had died. We were still in shock about the diagnosis, we couldn’t catch up with ourselves at the news of her passing.  She was a happy, healthy and compassionate women with a rye sense of humour. We still miss her massive smile and rolling eyes.

Simon, Gemma’s husband has just finished a whole month of challenges to raise blood cancer awareness for @Bloodwise. Judging by social media and the rise in google searches on the subject he’s done a great job. 

A few months after Gemma’s death, I found out my cousin Trudi has AML.  My heart was in my mouth, I could not comprehend that a disease I was not really aware of had taken someone in my life and could take another. I am pleased to say despite being put well and truly through the wringer on chemo, isolation units and stem cell transplants she is doing brilliantly.  Like me Trudi is passionate about raising awareness of her form of cancer and what it is like to endure the treatment for cancer.  I’m super proud that she made a film for Leukaemia Care to bring to life both the difficulty in spotting the signs (and she is a nurse with bags of medical knowledge and understanding of the system) and the mental and physical harshness of cancer treatment. 

Trudi Archer – Acute Myeloid Leukaemia (AML) – Spot Leukaemia

https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/inspirational-stories/trudi-archer/

It is only in becoming aware of the symptoms of different cancers and their impact on individuals living through treatment, that we can begin to catch cancer earlier, and help people feel part of their community and society when they endure treatment or live with their disease. 

“Awareness, for me, is about ‘not fearing cancer’, but being alert for its signs and empathetic and authentic with people who are in treatment or living with cancer.” 

Two months after Trudi’s diagnosis I found my lump.  As you know I was diagnosed with Grade 3, Stage 3, Triple Negative Breast Cancer. This has now metastasised to other parts of my body as well as a local reoccurrence. So I am now stage 4 and have an incurable and inoperable cancer. There are no known targeted therapies or treatments for Mtnbc.  I’m trying to experiment with immunotherapy, but every three weeks someone keeps giving me the placebo. I’m hoping to get onto another immunotherapy trial soon. This and/or chemo hopes to extend my life expectancy. Sounds grim, right? 

But I feel and look really well.  Honestly.

Not at all like I thought someone with stage 4 cancer would look like. Even last year, with stage 3 cancer, I didn’t think stage 4 would be like this. I was pretty ignorant. So don’t feel bad if you are.

This is another reason why I write this blog, to raise awareness of living with cancer.  To help us all work out how we accommodate cancer into our everyday lives, because like it or not, cancer is here to stay. Much better to be aware and face into it rather than to ignore it or the people who have it. 

I think listening to these stories, and those of the millions of other cancer patients out there, are what cancer awareness is all about.  Not the pink ribbons and decorated bras which will no doubt be marching out from tomorrow and the start of breast cancer awareness month. 

Don’t feel you need to wear a pink ribbon or buy something for breast cancer awareness, but do go home and give your boobs or moobs (because boys aren’t exempt) a good check over!

I’m serious. 

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