Hi my name is Kit and apparently I’m a stubborn cow! Now the person who told me that didn’t think it was a good thing. But for a secondary breast cancer patient it is a vital and life extending skill.
I hate conflict. I hate challenging “grown ups and professionals”. Even though I’m a grown up and a professional. I cringe at criticising others or questioning them. But over the last 3 years I’ve come to realise that I need to nurture my inner stubborn cow and use it as a battering ram against our cold and inflexible NHS.
It is far too difficult for us to challenge poor oncologists in the UK. I’m terrified of mine. But if I hadn’t challenged her repeatedly and dug my heels in I wouldn’t be about to start my 4th line of treatment. I would have quit work, got my pension, got a PICC line and accepted my fate with IV chemo. Because that’s what she has pushed me to do. I’ve been told I have no options but the ones she offers me. When I push back then miraculously options appear on the table. Those options have helped to keep me going. But I am so tired of fighting the system 24/7. As I have to fight cancer as well I’m considering forming a queuing system for everything that wants to make my life difficult. I’m struggling to fight all of them at the same time, but I know that I can’t stop. If I do I’ll die.
I’m privileged. I’m educated, white and as much as I hate to say it I’m middle class. When I need to I can fight for access to treatments in a strong and coherent way. At least until my oncologist glares at me and I feel like I’m 5 years old again! I can afford to travel for trials or pay for a few things privately (just a few). What upsets me is thinking about women with secondary breast cancer who don’t have my advantages. They might have a learning disability or not be confident at discussing medical information in English. They might be working class and feel nervous dealing with professionals. They might be surviving on benefits and not have spare cash. They might not have a laptop at home for research. I’m hopefully going on a clinical trial because I got stubborn and refused to let my oncologist moove (see what I did there) me on to the next treatment line.
But why should survival rely on us being stubborn cows? We have a National Health Service, not a Negotiated Help Service. We should all be given the best and equal treatment. I’ll admit that unlike our American friends we don’t have a constitution that says we are all created equal, but the NHS is meant to have that equality at its core. However, some are left chewing cud while others are dining out every night. These disparities infuriate me. It stuns me that Breast Cancer Now has failed to produce a guide for Stage 4 patients about what we are entitled to. Instead we have to study, research, find money and time and then beg for what we are meant to get. Seriously how hard would it be to produce a guide for patients outlining our treatment options? Maybe they are worried about how we’d react if we see written in black and white just how shortchanged we are. Maybe we might even be able to ask why a charity allegedly there to fight for us are letting the NHS get away with murder by restricting access to treatments. Maybe we’d be able to challenge them and NICE about what counts as “value for money”? But what do I know? After all I’m just a stubborn cow.
But to those wishing to silence me and the voices of groups like METUP UK I have only one thing to say – Moo off and let us fix your mess. We could hardly do a worse job of it after all!
So summon up your inner stubborn cow and join us in our #IAmThe31 campaign to fight for change. 31 of us don’t need to die every single day of breast cancer. But we do and that has to change. I might be a stubborn cow who is #BusyLivingWithMets, but sadly I can also say #IAmThe31 or I will be one day soon.
Thank you so much for reading.
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For donations our Go Fund Me page is >>> http://metupuk.org.uk/help-us/