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Saturday, January 2, 2010

Where is the beginning?

It seems appropriate to begin writing around midnight. My wife Jelena died of ovarian cancer last May 12 at around fifteen minutes past midnight. She had fought the disease for 11 years having been initially diagnosed two weeks or so after our wedding in June 1998.

I am not sure what I aim to achieve with this blog. I acquired the address almost 18 months ago and this is my first post. My initial thought was to blog about my wife's illness while she was fighting it. Partly as therapeutic reflection for myself but also to put something 'out there' for the spouses and primary carers of other cancer patients. There seems to be no shortage of literature for cancer sufferers but an absolute dearth of information for those that support them.

I procrastinated or decided not to start because it felt somehow disloyal to Jelena for me to blog about her illness while she was alive. It was "her" illness after all. Although to me it very much felt like "our" illness. And this feeling of disloyalty is at the heart of being the supporter of someone with cancer. It is an asymmetric relationship and this takes its toll over the years.

I remember very early on in her fight, probably after her third cycle of Carbo-Taxol in the winter of 1998, she said something to me which introduced the idea which was to eat away at me over the years.

'You know the one thing that keeps me going... It is your absolute conviction that I'm going to be OK'

I pulled her to me and hugged her because I didn't want her to see my face. Inside my head I was thinking,

'Sh*t! But those are just words. You're going to die'

I had, of course, done my research. Jelena had been diagnosed with a stage 1c left ovarian adenocarcinoma (she also had a rare genetic disorder called Lynch syndrome type II which essentially meant that she had lost her father and all of his brothers to cancer). She had had only a left salpingo oopherectomy (they only took out the ovary with the tumour) and adjuvant chemotherpahy because she desperately wanted to have children and had ignored the advice to have a radical hysterectomy and bilateral oopherectomy. With this diagnosis at the time Jelena had a five year survival expectation of around 90%. But somehow I got it into my head that she had a 5% chance. Like most reasonable, educated, balanced 29 year-olds.... I had completely panicked and failed to take in the most important bit of information.

My ignorance is not really the issue here although it contributed. The problem was that now Jelena had cancer I could no longer tell her everything. She could cry in the night about how scared she was and wail about the injustice of it all. I could not.

What she said to me was,

'...the one that keeps me going... is your absolute conviction that I'm going to be OK'

What I heard was

'I want you to lie to me. I need you to lie to me. You can't tell me how scared you are. I'm not strong enough to carry your fears...'

Neither was I but that is for another day.

If you are the primary carer of someone with cancer, please find someone you can talk to about your fears. It will make your life much much more bearable. I laboured under some kind of demented superman complex that I could carry my wife, her family and my own on my back for almost three years before I got any real help. I have been seeing a therapist on and off for about 8 years and this blog may become an extension of that process.

I set myself no targets with this blog. I will simply reflect upon the time I spent walking with Jelena and cancer and see what I learn along the way. I hope to unwind some of it in order to be as good a father as I can to our four year old daughter. If that is in some way helpful to others then that will make me happy.

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