I’m 36 and I walk around with a serial killer inside of me. One day soon, almost certainly before my 40th birthday, that serial killer is going to break free and end my life in a slow and painful way. To delay this from happening I’ve had to fill my body with poison (some of the drug boxes actually have skull and crossbones warning signs on!). I’ve been fried by the sunbed from hell known as a radiotherapy machine. All to keep my killer caged up for as long as possible so I can live and love my life.
But no matter what I do my killer is always there. It’s there when I feel my breast cancer tumours as I do push ups. It’s there when I wince from bone mets pain as I sit down at a desk to do the job I love. My killer is the quietly taunting snigger in my head when I get excited about a book or movie coming out next year. As I think excitedly about finding out how a saga ends, my killer is laughingly reminding me I might not be alive then. My killer is the one making me want to cry every time I look at my body as I see the needle marks, the radiotherapy burns and tattoos, the drugs rash that won’t go away. It never fully goes away. Even when I’m having a wonderful time, the thought is always there in the back of my mind – what if this is the last time I get to do this. But as people keep telling me I need to stay positive – obviously their mental health is a lot more resilient than mine.
I’ve been knowingly living with my killer for 3 years and 5 months. Yet I still struggle to say out loud that I am dying of secondary breast cancer. Deep down I know that I haven’t processed that yet. I was diagnosed straight away (aka de novo) with SBC. I never had time to dream of being cured. I knew from the moment I was diagnosed in A&E that I was screwed. Ever since my mental health has been a rollercoaster.
When I wake up I immediately feel tired as I put my brave face on. I try to be strong. After all most people don’t really want the truth when they ask how you are. The cancer muggles want inspiring tales of strength and courage. If I told them how my mental health has basically collapsed they’d run screaming. When I tell the truth I see the awkwardness, the pain and the denial of my truth on the faces of my loved ones. Which just breaks me a little more inside. When I go to bed the fears and stresses of the day have left me exhausted. What breaks me is knowing that I’ll have to do it all over again tomorrow.
I don’t want to die in my 30s. I want to grow old with my husband. I want to collect the pension I’ve been paying into. I want to keep having fun. I want to work full time for another 30 years. Instead I get to learn about end of life care and horrors like cancer cachexia. I get to watch my husband try to hide his grief for his living wife. I get to see secondary breast cancer patients be ignored and brushed aside by those who are meant to protect and fight for us. Is it any surprise my mental health is a mess?
I’m doing everything I can to stay alive. I work hard on my mental health. I have weekly counselling sessions. I try to be strong and mindful. I meditate. I build up that mental health wall every day. But my killer is inside my wall anyway. Like so many of us who are dying for a cure, I need help to maintain my mental and physical health walls.
Every time we are told to be patient and that change takes time, my mental wall rocks from how hard it’s being kicked. When I have nightmares about whether the hospital would even be bothered to treat me if I was in an accident, it’s like a bomb has been dropped on my mental health wall. As for NICE refusing to approve drugs that could keep me alive, that feels like an earthquake and tsunami going off under my mental health wall. Every time I hear that a treatment isn’t cost effective, my childhood insecurities rise up and translate it to “you’re not worth it”.
I’ll keep working on my mental health, but I’m also waiting for my saviour to come riding in to throw out my unwanted lodger. I’d even be happy if someone could spare a few bricks for my mental health wall. Hopefully my saviour will ride up before I die. Until then my fight will be to stop people and policies kicking my wall. That’s why I’m a member of MET UP UK – because we want to kick the real enemy – secondary breast cancer. Now that kick will definitely be a mental health boost!
By MetUpUK Member, Kit D.