Bennedikte is a stage 4 kidney cancer patient in Denmark. She shares her thoughts on ‘hope’ and survivorship.
Fourteen months ago I found a big bump on my neck, and was diagnosed with kidney cancer that had grown into the liver and spread to the lymph nodes and bones.
So instead of being a healthy 48 year old woman, I am now a stage 4 cancer patient doing life-prolonging treatment. I’m married, have 3 children and worked as a teaching nurse, specializing in psychiatry.
Physically, I don’t have major issues from the cancer yet. My treatment has been ipilimumab and nivolumab, and last week pain-relieving radiation on the metastases on the neck.
Now I’m preoccupied with “having a lovely life while I die,” and especially thoughts of hope and acceptance have filled my head. I’d like to share some reflections.
When I was diagnosed, some people around me said: “You must not lose hope,” “Think positively,” “If you do not want to die from this, then you must always stay hopeful.”
I read reports from other cancer sufferers, where it was often pointed out, how much of a difference hope made. Things like “I just knew I had to believe, let hope light me up, so I could succeed and look where I am today.”
But it didn’t happen to me. No hopeful glitter-light has hit me.
I feel wrong, when I can’t find hope. And scared, because everyone says it’s so important.
What am I doing wrong? Don’t I love my life enough? Maybe I’ll die early, because I can’t hope? As a nurse, I know how well documented the placebo effect is. So why can’t I believe and feel lighted with hope?
And what is hope? A feeling, a state or an attitude? Something you become or decide to have?
I try to accept my new terms. I am a person, who is very realistic, driven by facts and evidence, and perhaps, what you can call a “defensive pessimist.”
I always need to know the “worst case.” And normally it helps me a lot in dealing with things. To be prepared. And then I have thought about the worst and how I can handle that, I can let go.
This diagnosis is hard for me, because I know it will lead to my death (unless I have an accident or get a stroke or something like that). Of course I don’t know when and how.
I am scared, sometimes deadly scared. Most of the time I just live my life.
Maybe it’s because I handle things with that defensive pessimism, but I often feel lonely, when people say “stay positive and keep high hope.”
In a way I think they are right and in another way it makes me feel alone in the hardest thing I ever had to deal with. Me – dying from my kids and husband. Me – looking forward to a life with sickness. I know they are trying to encourage me, but instead it feels like my sorrow and sadness is wrong. Like it’s a forbidden place to go.
Luckily, I have a few friends, that dare to be with me “in the darkest hours”. And therefore, its only a place I visit on special occasions, like when I go to cancer-related appointments, blood tests, treatment, scans and all the extras. My reality is at least 4 appointments per month, and a “doomsday-scan” every 3 months.
I have accepted that “darkest hours” will be an ongoing part of my life. Its painful, but not dangerous. Luckily, I’m able to leave the dark afterwards.
I do sometimes still long for the hopeful glitter-light to hit me.
