GUEST BLOG: My beautiful Son

Author: Nina Praske

My beautiful son

Over homemade soup in a little independent vegetarian café (not a greasy spoon) my son said to me ‘I bloody love this place’. Conversation flowed as always. He explained Foucault to his confused mother (again) and told me that ‘postmodernism means never having to say you are sorry’. On that bright autumn afternoon contentment enveloped us. Leaves were turning red and gold and my beloved boy was glowing. As we walked across a cobbled courtyard past a world-famous historic library, he said ‘you don’t go to work for me to camp it up in this Brideshead Revisited fantasy’. James was wrong about that. My darling was bright-eyed, delighted and relishing the rarity of being a product of a northern state school among so many Etonians. Worries that a course at such a prestigious place would be too stressful for my serious, perfectionist stress-head son were melting away in the face of his relaxed, confident and joyous demeanour. If on that day in 2011 James had walked out into the autumn sunshine, admired his splendid surroundings, felt good about himself and been hit by a bus and killed outright, I think that might have been better for him than what happened.

I had not really encouraged James to apply for a doctorate, because I thought a bit of a break might do him good. I thought maybe he’d like to get his nose out of his books for a little while, perhaps work in a bookshop, or travel, or indeed enjoy a little spell as a circus performer. University was not an idea we particularly pushed, but we would have been surprised if none of our children had gone. They were all in a happy place when the nightmare began. My concern now about being a bit neutral about his aspiration to a doctorate is that James might have got the impression that I thought he couldn’t manage academia at such a high level in such a prestigious place. Of course, I didn’t think that.

Dyslexia is the default setting in our family, so school was not an unmitigated success and bruises to self-esteem left their marks. James did feel the need to prove himself and was hugely self-conscious because, despite being extremely articulate, he learned to read late and struggled to master spelling. He didn’t realise that no one else equated his dyslexia with limited ability. Being dyslexic myself gave me a lot of empathy with my children. I did not pass the Eleven Plus, but I am quite well balanced. Chips on both shoulders. As well as understanding how dyslexia can impact on self-esteem, my mature years enable me to see the funny side. At Christmas, I found a book called ‘The Secret Life of Cows’ for my partner, my Leo. He would have been interested if it had been about crows as I thought. Once I read in a letter from my mother-in-law that ‘the tortoise has died’. It said ‘rotisserie’. Tortoise makes more sense.

My daughter Nicola and I were in Hong Kong when the monster revealed its disgusting self. James, Leo and his identical twin Michael held onto the horrible news until they could tell us face to face. The circus folk knew because Leo had called Michael at work. Immediately he walked out of his life as a contortionists, without hesitation, to be with his brother.

My last truly happy memory is of the flight back from Hong Kong, over Switzerland at dawn an hour before landing. Nicola was asleep and the misty morning sky was turning a radiant rosy streaky pink. Leo had said he was picking us up. This had aroused a vague suspicion in me that my dad had had a stroke or something. There is a bus from Heathrow practically to our front door and Leo hates driving.

In the arrivals lounge Leo said, ‘I’ve got something to tell you, James has been in hospital’. Appendicitis I thought. When Leo said, ‘He’s got cancer’ I screamed ‘that’s not true’. My closed fists bashed him in the chest repeatedly. Leo just stood there. Then I ran. Nicola sank down to the floor and retreated into her own head. (On the day before James died she told me that my reaction then was the most frightening thing she had ever seen, and made me promise not to behave like that when the end came). Even while I was screaming I was already plotting. Obviously, James must have the typical young man testicular cancer, which would have already been fixed surgically. It was just a matter of recovery and rehabilitation.

Friends who had a bit of an uneasy feeling could not possibly guess what was wrong. A malevolent creature had invaded James’ body and was systematically destroying the foundations of everything we imagined to be real in the world. Implausible. Impossible. The stuff of nightmares. But real. Only when Nicola and I had been told was the horrible truth allowed out via phone calls and emails. Leo had been drafting and redrafting the shattering message for a week. When we called our family members and close friends, we carefully made sure that nobody was on their own before dropping the bomb. Although we tried not to alarm anyone, spoken in a quiet and controlled way, the words ‘are you by yourself’ and ‘are you sitting down’ are pretty scary. Everyone reacted calmly with the almost inaudible response ‘oh no’. Nobody screamed. Despite their utter devastation the message our closest people transmitted to us, as one, was ‘we are with you’. We were and are bloody lucky in that respect.

James was alone when he was told that he had cancer, and this should not have happened. Somebody took their eye off the ball and handed a young man a death sentence when nobody familiar was with him. Medics, please learn from this. I can only assume that everyone involved thought that someone else was taking responsibility for looking after him at that crucial point. I am critical of the way he was told.

I wrote ‘Love in the Present Tense’ as a learning resource for anyone involved in cancer care or palliative care, especially those working with young adults and their families. James’ medical team did their absolute best and I am a huge fan of the NHS. He could not be saved. I know resources are tight but I do wish someone had been there to look after the emotional health of my terminally ill son and his family. Denial is a very powerful defence mechanism and I certainly failed completely to translate ‘we are going to have to have a difficult conversation’ into ‘your son is going to die’. Nobody spoke to Nicola or Michael who considered themselves to be full of useful organs they would have gladly shared in order to keep their brother alive. Leo carried the can and I refused to believe what he was telling me about James’ prognosis. As well as not having time, I think the medics had no idea how to relate to us. Thankfully a loss like ours is rare but I think reading one short book from an insider perspective during training might help to develop those essential empathy muscles all medics need in the face of absolute tragedy.

I love James in the present tense. We all do. I still can hardly believe he is not going to walk through the door one day soon and time passing makes no difference. We are positive people, lucky to be surrounded with love and leading decent and productive lives. We have not lost our compassion but we have lost James and therefore everything comes with a side order of grief which we have to follow up with an extra portion of strawberries and cream and maybe a cheeky cocktail in order to keep going.

Please read my book especially if you are in a position to help a family like mine. Thankyou so much to Critical Publishing for giving me the opportunity to share my story with a view to providing a useful learning resource for people who really need to understand what it is like to lose someone so precious and so young.

With many thanks to Nina for sharing her blog and story with us.