“Please can you put her on my lap, I haven’t been able to hold her for two weeks”, he asked before he was hospitalized. The backpain was already there when she was born, our beautiful daughter. We were still getting used to being a family of four, finding new routines, the right balance. But we never made it that far, our pink cloud vanished overnight. Death was knocking on our front door.
After countless phone calls to the hospital begging to let him in, to listen to our worries, to take his pain seriously, we finally got the right scan showing everything that was wrong inside his body. He was diagnosed with metastatic cancer stage 4 and a beginning paraplegia. We were in shock. Those first nights in the hospital I woke up in the complete dark wishing so hard that our own bedroom would appear when the first rays of sun entered the room. Sleeping next to him, our little girl between us. She was so tiny, fully breastfeeding. I cried when I realized we were still in the hospital, the terrifying nightmare being real. It felt like we were punished because our life was simply too beautiful.
We were transferred to another hospital to get surgery. Right after he woke up the doctor told us he was going to die. It was a mistake; it wasn’t his turn to speak. But the impact of those words was too big to handle. They still reverberate. Immunotherapy turned out to be the only option left, giving us some hope in a season full of darkness.
We were just trying to hold on, we still are. It’s extremely hard work. To stay connected, to not lose each other in the anger and sadness. To not let the uncertainty and worries get the better of us. Sometimes I am grieving. Sometimes I am overwhelmed with guilt. Looking at our baby girl, feeling like I have missed so much of her first year. I was there and yet I really wasn’t. Our amazing son, only 4 years old, always happy, no idea of the darkness of the dark cloud above us, the weight on our shoulders. Most of the time I am afraid. Afraid of losing him, us. Afraid of seeing the tears on our children’s faces. Afraid of the devastating heartbreak.
The kids kept us sane. We couldn’t drown in sadness and grief; we couldn’t hide under a blanket. We had to stay strong for them. I had to be strong for all of them. I had to get up, every day. Carrying the worries of our family.
The first scans came back positive. And so we try to carry on with our lives, live our life the fullest, the hardest we can. There is still so much uncertainty, the big C chasing us everywhere we go, haunting us, reminding us of the fragility of life. It’s always in the room, to a greater or lesser extent. Unpredictable and making it impossible to plan ahead. Our life will never be the same again. We will never be able to fantasize about our future without any worries ever again. It’s one big mindfuck. Sad days and less sad days alternate. Between life and death, hope is all we got.
There was a moment we thought we had to say goodbye. I asked him if he was afraid to die. “No”, he answered. “I’m not afraid of dying. I’m afraid of saying goodbye.”