When I got sick, I got numerous offers for advice. I do not think I had ever known anyone who had ovarian cancer before. But now, countless friends suddenly had a sister-in-law, a cousin, a daughter-in-law, a neighbor or mother’s sister who had been sick.
They all very much wanted to talk to me and give good advice. But I did not want to talk to any of them. A colleague who recently had ovarian cancer herself gave me some wise advice:
“Stay away from the Facebook-groups. At least my experience is that there is too much Greek tragedy lamenting women in those forums,” she said.
It sounded sensible. I had no room for stories of illness. Neither the good nor the miserable. Instead, I was serious about learning how to play my piano, Piana.
I had found Itai, a young musician who teaches, and he has faithfully come to me once a week. Together we started with the simple scales and moved through the theme of The Pink Panther – only in the right hand – quickly on to Bach’s Prelude in C in both.
There have been weeks where the only thing I could do was lie flat on the couch, get up, practice a little, and lay down again. I even had piano lessons where I could not play a note, but could enjoy being a one-person audience for a solo concert.
We have stuck together Piana, Itai and I. And now there is already a nice stack of music sheets next to the piano: some blues, Bach’s Minuet in G and not least the wonderful Love Ballade by my teacher’s big idol Oscar Peterson. A piece I love to play.
I have also stuck to the kayak club. Not that during the winter season I dared approach the sea, spraying waves and wet clothes with a suppressed immune system. Not at all.
But every Friday morning I went down to the sea, just as my paddling friends were coming ashore. I could feel the gusts and occasionally the rain. I watched the sparkling flat sea, the wavy swell, foaming waves and I even saw several rainbows.
Every Friday I received the most generous rounds of big saltwater-spiced hugs and kisses and encouraging remarks that comforted and snugged me like a golden energy-sheath.
Week after week.
It turned out I could not stay away from the Facebook-groups. As I began to feel at home in my cancer patient status and confident in my own course of treatment, I joined an ovarian cancer support group on Facebook.
I chose to keep some distance. I found an Englishlanguage group with thousands of members worldwide. From the UK across the US to Malaysia and Australia.
It has not always been easy. I often had to scroll quickly past a post that began with the the harsh and sad words ‘Then we lost our beloved…’. I have been shaken from reading many posts from very young women with or without children, who have contracted ovarian cancer, despite the fact that on a statistic average those who get this cancer are the 61, 62 year-old year-old. We, the ones with worn out ovaries done doing their job.
Through the group, I learned a lot about the diversity of ovarian cancer, about differences in the treatment offered in different places of the world, and of how different our bodies react when treated with the same poisonous substances.
It has been haunting to read how long women in many places experience severe symptoms, without any physician or hospital taking their condition and concerns seriously. It has warmed my heart to read the many sensible answers and sound advice members of the group generously give each other.
I have also learned that there are many experimental schemes with new drugs in hospitals around the world. And that often women with multiple recurrences are the ones that participate in these trials wishing and gambling with their survival while hopefully paving the way for themselves and all the rest of us.
It has been both daunting and encouraging to read dozens of women’s answers to simple questions such as: For how long/short have you each been cancerfree after the end of your first round of treatment? Reading answers going from a few months to half and whole decades.
An endless diversity.
In this way, when we give each other insight into the individual experience, there is both cause for reverent concern – and for cautious optimism.
This blog is the fourteeth chapter of my book The Lights Within, read more about the book and buy it at http://www.hannefoighel.com
See more of photographer Budit’s works at: http://www./instagram.com/budit/?hl=en