Over the last few years the cancer community has grown and developed into many things. Mostly positive. I can’t help but feel like I am being pushed out. I don’t fit the marketing mould. I am not news worthy or picture perfect. I swear and I’m honest which isn’t pink or fluffy enough for certain brands who use my illness for their own benefit. I am not here to feed the god complex of PR firms. I am not here to warm the cockles of board room men and their super duper hens.
I am here trying to live. Trying to spread real hope with gut wrenching honesty. I want to raise awareness. Whether you choose to wear a ball gown or your pyjamas to the hospital I applaud you. I am not here to be superior. I am not the pied Piper I have no answers and I have no clue what I am doing. I have no ego or arrogance when it comes to living with cancer. I don’t push myself into an inspirational narrative. I don’t take life by the horns everyday. I take time for myself without giving a reason. I don’t feel I owe anyone anything. I see and feel the pain that surrounds me. I see everyone’s children in the eyes of my own.
Sometimes I drown in the sadness. Sometimes I bask in the silly. I’m beginning to understand that best for me can change in any given minute. I find it easier to write in the dark place because when I’m in the light nothing else matters.
I smile and say thank you. I mean it with all my heart.
My gratitude list is long and ever growing.
But…fuck me i’m fed up of needles.
I’m pricked, prodded and kept alive yet I have this voice deep inside saying leave me alone.
It was barely a whisper, it’s getting louder.
From the day I was diagnosed my body and mind have been pushed to the brink. My body is still healing my mind never will.
I don’t want to stop treatment, far from it.
I love my life and everything in it.
I am just having a hard time getting my head around it all.
I actively try not compare.
In every aspect of my life.
It’s hard and will be something I have to work on.
When you are in your worst pain you think your worst thoughts.
When you get caught up in that and why me? It starts to eat at you.
Everyone is the enemy and no one understands what you’ve been through.
Anger is like the jaws of a crocodile.
The closing jaw muscles are so strong and it can bite you in two.
But the muscles to open the jaw are small and weak.
Making them easy to subdue.
Maybe I have watched too many films but I am constantly narrating my own life. Going through every possible scenario, some I wish I could change and some I wish I could have. My mind is non stop. I over think everything to my own detriment. I don’t give anyone a chance to react or feel because I have already been through every single outcome in my head
Covid-19 & Cancer.
I remember watching the news and nothing was sinking in. A killer virus was heading our way. There was so much talking, the same questions being asked a million different ways and never once getting an answer. Just more questions.
The world of constant fear I lived in was now merging with the real world. The rules I live by are now applicable to everyone. No one is safe. Covid-19 was coming and no one or thing can stop it. We had to come together.
I thought I had felt the full extent of my fear. I was blissfully unaware of how much was still left to feel. After everything I have endured to stay alive it could be all for nothing. A virus of unknown origin was ravaging the earth, whole countries were shutting down. World leaders were visibly shook. Fear and hysteria was as rife as Covid-19. I saw the panic and uncertainty I felt every second of everyday everywhere I looked.
I took my children out of school a few days before the Government announced lockdown. I had to take control and do what I felt was best to save my sanity as well as our lives. No amount of positive thinking or attitude was going to protect us.
Lockdown is lonely, those of us who have been through chemo lockdown is our normal. Whilst we had to shut our lives down the world carried on without us. I had to watch my family & friends lives as a bystander. Now everyone is in lockdown selfishly I’m not as lonely. We are all in the same boat, I find that comforting. Community spirit is at an all time high. For the first time in a very long time I am excited to get back to life. We are not out of woods yet but this strange horrible time is something we share. It happened to all of us.
Together like a Phoenix we will rise from ashes stronger.
Because I will never feel look or behave like I did BC (before cancer) it’s easy to get caught up in who I am now.
Fundamentally my core is the same just evolved.
I live in an increasing more common limbo.
Dependant on science and luck.
The constant I can rely on is death.
For this I am at an advantage.
All the things society says I shouldn’t love and treasure I do.
We are being tricked into thinking we will live for ever.
Eat Blueberries have Botox be nipped and tucked and you will trick the grim reaper.
We are sold an idea that appearing young and healthy is the secret to the universe.
That by living by someone else’s ideals we will be happier our lives will be fuller.
We put value in man made things but no value in the man.
We ridicule a woman for just being a woman.
It takes people who have been poisoned, diced and mutilated to make you feel comfortable in your own skin.
Why is the front line filled with the mentally maimed and damaged? Why does it fall to the underdog to become the hero?
Enter the death eaters.
They don’t stand with the front line they want to be the front line, now all eyes are on them.
It’s a never-ending story.
It’s conversations and questions and answers that will never be answered because no one is actually listening.
We are too busy trying to be noticed.
Industry makes us not good enough.
We turn on each other.
We are taught to have no responsibility for ourselves.
We are taught that free thinkers are dippy hippies and are not to taken seriously.
Creatives are dreamers whose opinions do not matter.
We are shown that no one can genuinely be happy in their selves.
We have to surround ourselves with things.
Wealth equals health.
Is it any wonder our mental health is crumbling.
Is it any wonder healthy bodies are choosing to die?
No matter how many things they have or how they look they can’t choose to live anymore.
We need to take it back, we need to take back what it means to alive and start to value the man over what the man makes.
Nothing is more important.
It shouldn’t take a lunch date with the angel of death to see the world for what it is.
Take down the filter.
Cosmic creatures with no self-belief.
Like a dying star.
Kindness is imploding on itself.
Hate is lazy.
Hate is wasteful.
We are all miracles.
Christmas Cheer and Cancer
Christmas 2017. Oh Lord. I had not long finished chemo and was due to start Radiotherapy the day after boxing day. I was destroyed. I naively thought though the worst was behind me, that chemotherapy was the worth thing I would experience. I got through Christmas and started the new year with a smugness. I was invincible after all.
Christmas 2018. I was truly broken. I was a fraud. I wasn’t brave, I wasn’t strong enough to smash this and I wasn’t fighting. I was merely breathing with is completely involuntary by the way. I laughed and smiled and drank from the cup of Human Kindness. I was like Tiny Tim trying to fill everyone with joy but in reality everyone just felt immense sadness. To live is to live with cancer and that is scary.
Christmas 2019. I am healing. I would be lying if I said I have made my peace with this. I am not a liar. Life is no longer a game of Street Fighter 2 Turbo. I do not live in fight mode. Secondary Breast Cancer isn’t a fight I can win because it isn’t a fight. Cancer isn’t a fight. Cancer is a bespoke disease that learns and mutates accordingly. It perfectly corrupts and kills without rhyme or reason. It doesn’t care about gender or age. Its wild and savage and unfair. It was once unstoppable, incurable. You couldn’t live if you had cancer. Cancer is clever but we are cleverer. People can be cured, people ARE cured. Some people die but some of us live. Live with cancer. Live with strict medical routines of medicines, scans, side effects, fear, anxiety……
As they say in Star Trek ‘It’s life Jim but not as we know it’
Quagmire. Best word to describe how I feel about life right now. I have so much stuff to sort and fix but I’m swimming against the tide.
My reserve tanks are all out, I’m running on fumes. I know there are people in power people who could help but I am weak. I am not confident nor do I have the energy to front it. I’ve been fronting my whole life. I just need help. When I ask for it.
I got my independents back but was met with some issues. The summer months were ok but then winter hits and bam! I’m in the quicksand. I am not a victim and I do not like sounding victimised but when I re read my words I see that I am. I am being victimised, I am not being treated with care and dignity. My rights are not being met. Yes I understand that everyone is over worked and underpaid so I stay quite and take their feeble excuses. Who is understanding me and my struggle?
I live on an estate built by St James, my flat is owned by Thames Valley Housing Association.
I moved here in 2008, second floor 2 bedroom flat. My forever home. Even when my family grew, we made it work in my forever home. I never wanted to move.
I never wanted cancer either. I didn’t want my life torn apart, sliced and diced in more then metaphoric ways. I never asked to be disabled, I never asked to feel half alive. A failure as a mother and a wife. I never asked to be a burden on my family friends and neighbours but here we are.
Things I have asked for, a speed hump to be removed so I can exit my estate the quickest and simplest way.
No matter who I ask or what I ask its never simple.
If I don’t do what is asked of me I die. Thats how high my responsibilities are. I do what is required so I can do my job as a mother. I don’t get the luxury my housing officer gets. But he is overworked and underpaid.
Not my problem though is it. I am my own problem I need to do my best.
In September this year I watched a block of flat twice the size of mine burn down in 6 minutes. Thankfully everyone got out. This has lead to fire safety being checked on the rest of the estate. Its frightening to live here. At a residents meeting there was talk of a list of vulnerable residents. I put my hand up to ask how you got on that list. They said if you are disabled or seriously ill. I tick both boxes. A man named Howard Dawson (who has over 25 years experience in social housing) pulled me to one side and apologised he hadn’t been informed. My housing officer Colin Wilson knows my vulnerabilities, he has seen my doctors letters knows I am registered disabled and also knows I can not exit the estate the quickest and easiest way because I’ve been asking since January about a speed bump that restricts me. Able bodied people are fine. He has not thought to put me on the list.
I do not feel seen. I do not feel heard. I am scared.
The people I have encountered since being diagnosed at Thames Valley and Sutton Council are rude and unhelpful.
I want to be the best Mum I can be so I need to be the happiest Mum I can be but right now I’m trapped. I am trapped in a world of pain and restrictions. I am trapped in my depression and anxiety. I am trapped in this flat because no one will help me.
I am not ashamed to say I am scared.
Breast Cancer Awareness Month.
Knowing the difference between an awareness campaign and fund raising campaign is very important. Its something I wish I knew sooner.
The thing that shocked me the most was how lonely I felt. How empty I felt. Cancer was destroying so much more then my body. Just like the rouge cells turn and mutate the good cells it was doing the same to my soul. I was a roaring fire now I’m barely more then a spark. I didn’t understand how a pink ribbon could make any of that feel better.
I was ignorant.
I don’t live in a world that I have to hide my illness. I don’t feel shame. I am lucky.
With awareness comes solidarity.
When the body is under attack it starts shutting down. Some weird self preservation mode. The same thing happens to your mind. You shut down.
I ignored symptoms. I allowed fear to cloud my better judgment. I allowed fear to consume me.
Now when I see the Pink Ribbon I don’t feel as lonely. I feel all the people lost before me and all the people thriving and living cancer free lives. I finally see the intent and it feels good.
The Pink Ribbon was never meant to reflect how cancer feels, its a white dove, a remembrance flag, a salute, a hello. It’s everyone effected by Breast Cancer secured in a never ending loop.