... Got me feeling like:
I'm still angry.
1/3 of people who get BC will die from secondary breast cancer (SBC), but you wouldn't know this from breast cancer awareness month (BCAM).
Secondary cancer (stage 4, metastasised, spread, incurable, fatal. All mean the same) is being engulfed by the bloody pink ribbon campaign...
Just look at #breastcancerawarenessmonth
... Out of 31 days. Just 1...
1 measly day is given towards the awareness of SBC.
Now don't get me wrong, optimism and positivity are a great way to live your life! Without them, there would be no hope, or no reason to get up in the mornings. I think it just says a-lot about the world we live in, when realism has become a pessimistic mindset.
The type of 'positivity' presented from BCAM however, is absolutely toxic and here is why:
Most people want to do the 'right thing' and will try to do things with this intent. The issue is, people don't realise the lens they use to look at this world, has been shaped from their own experiences in the past.
So... your a 'good person' right? what on earth can you do or say to someone who has cancer without upsetting them?
You are also frightened cancer will come and get you, or a loved one in future, so naturally, you would like to know a little more about it.
So you turn to the main charities for guidance. They will know right? That lady dressed in a pink tutu collecting donations in Tesco? Or how about the cute coffee morning/ bake sale you attended? (Now please don't get me wrong. These are kind, well-intentioned people who have taken up their own time to try and make a small bit of difference and put some good into this messed up world).
You now have a great idea of what you need to do to 'help'-
You start to pick up the language like: "You will fight this", "Just keep positive" and "wishing you a speedy recovery".
You do a sponsored activity
You wear pink
and you volunteer
So what's wrong with these things?
Well... nothing. On their own merit...
But inherently, all these actions can be very weighted if you're not cautious.
The under representation of SBC in general means to the average person, cancer is something that can be overcome. They don't realise that 1/3 of people they are talking to with BC, will be currently dying from it.
I will be one of the 31 who will die a day in the UK from BC and here is how I feel-
To the well wishers saying you can "fight this" don't you realise this statement paradoxically chips away to whatever 'fight' my spirit has left? Seriously, how does somebody 'fight' themselves?
When they type "speedy recovery" I wonder whether to leave it or have the unpleasant task of informing them I am in-fact, slowly dying. This is subsequently followed by a tremendous wave of guilt for just acknowledging and being honest with the well wisher.
But the worst one. Is "JUST BE POSITIVE". This statement is so unbelievable patronising, antagonising and downright Ignorant to me.
Ok... so I am positive this cancer will kill me?
No. I know that's not what you meant...
...Anyone who has met me in person would tell you I'm certainly a glass half full kinda gal, and I really bloody love life. But, there is no way I am about to be 'positive' while my treatment options dwindle away over time and I grieve for the life I once had. Especially when it could be helped!
Unfortunately, to argue against the 'pink positivity' as a SBC patient deems you "ungrateful", "hysterical" and downright "insensitive" to the plight of those dealing with Primary BC.
Your donations, sponsored activities and wearing pink... All your efforts are going into boosting a company's profile! You are free advertising and revenue; can you not see that? I, like many other SBC patients watch as your good intentions and money go into a triple figure salary wage packet, while a single figure % is given towards the only things that will actually save our lives. These charities are not putting the pressure where it matters, nor are they managing to obtain simple data (starting with the mortality rate for SBC), which makes it incredibly hard to actually build a case to change anything.
There is one. ONE SBC nurse in all of wales (and I am lucky enough to have Ann Bakers support!) - now tell me that we are not under-supported or under-represented.
There are genuinely better options of treatment out there, but it’s the red tape and apathy that's tightening that rope...Please stand by us and start by dropping some pressure on your MPs, particularly during this COVID crisis (MetUPUK will have an email template ready within the coming week, I'll share on social media and link it here) and please be mindful of where your efforts are going.
We need the data, we need support and we need more exposure. We have the framework, but little power.
WE. DEMAND CHANGE.
The truth is, we are being left to die, and no amount of fighting, positivity or pink is going to save us. How on earth could anyone be thrilled about that?
Charities do of course have their good points, but if you're looking to make a real difference to actually making cancer a chronic illness and not terminal - check out the patient advocacy and activist group MetUPUK. Or follow us on Instagram, Twitter or Facebook for ways you may be able to help us out.
A ' no holds' page about my personal fight with incurable advanced Breast Cancer, in the hope it will give a realistic, detailed account to other young women going through the unfortunate illness.