I’m 36 years old and I’m dying of secondary breast cancer. As a result I’m petrified 24/7. I’m currently waiting for scan results that will tell me if my current treatment is still working. I’m scared. But I know that if I post my feelings on Twitter and Facebook that my feelings will be invalidated. Not by mean people, but by people trying to be kind and encouraging me to be positive. Oh how I fu*king hate that word!
Fears and tears seem to be the enemy in this cancer world that I’m an unwilling prisoner in. I’ve seen countless posts on forums where people reaching out in fear and anger are reassured and comforted.
They are told to be hopeful, positive and even when the end is nigh to be at peace. It’s all just so bloody passive and perky. My husband’s name starts with P and that is the only good thing about that sodding letter. So many words I’ve come to hate and despise start with it. Pink, perky, positive and progression. It makes me want to scream.
What the fu*k is positive about cancer? Seriously what the fu*k? Why are we so passive as patients? I’m yet to see a forum post where someone stressed out of their head is advised to scream, cry, shout and get hammered. Instead we are advised to be positive, stay busy and research options. To basically do anything but show our true feelings. I remember reading a page about end of life care where it stated that feeding tubes can be inserted into the stomach and hidden by blankets. Not for the benefit of the patients but to protect the feelings of relatives and friends who might be distressed. That’s what the whole thing seems to be about, cancer patients being positive and strong so we don’t upset others. Well fu*k that bullsh*t – I’m not going quietly into any night. If death wants me it is going to have to take me kicking, sobbing and screaming. I’m going to die in my 30s. How can that be a good or peaceful death? It’s a sodding disgraceful indictment of how we are being left to die by a system that doesn’t care.
But I’m making a cardinal sin here – I’m being angry and critical. Oops! Try finding someone who gives a damn. I’m fed up to the teeth of being told to be patient and that change takes time. Heaven forbid we upset the feelings of policy makers, charities and cancer researchers. They are failing and they get honoured and rewarded for that failure with massive salaries, promotions and publicity. Meanwhile my friends and I are expected to die peacefully so they can use our deaths to raise even more money for fancy conferences and seminars where they celebrate giving some patients an extra 3 months of life.
Some of us don’t have time to wait for glacial pace change. We need a revolution. My best friend died of cancer aged 30. My personal trainer Vicky who is incredible has stage 4. There are so many of us dying young. If we let our feelings out and all screamed at once, I challenge policy makers to not hear us. The whole country clapped for carers recently. How about as a country we scream into the wind about a disease that on average slaughters 450 people a day in the UK alone? I plan to rage against the dying of the light for as long as I can.
Anyone want to join me?
Support METUP UK, support the new stage 4 initiative #PatientsTogether and #BusyLivingWithMets – Scream, shout, cry, get drunk and get angry. Or you could always be positive, pretty and wear pink the ONE day a year to show you care! After all so much change in history has been caused by people wearing pink and having a coffee and cake morning 🙄
Kit @METUPUK patient advocate