The other day I was enjoying a coffee date with two girlfriends at our local cafe. Both girls were quite distressed over the daughter of a friend of theirs, who was recently diagnosed with a malignant (cancerous) brain tumour. Julia* is 3yrs old, and although the tumour may have been there since birth (undetectably until now), it was now so big that it had covered more than half of her left brain and wrapped itself around Julia’s brain stem. It has been operated on, had three rounds of chemo, operated on again (and again, and again) and then had three more rounds of chemo. 3yrs old! Are you crying yet? It gets worse. Little Julia’s mother Heather*, also had cancer. She discovered a lump in her breast when Julia was just 1.5yrs old. Heather herself has received operations, chemotherapy and radiation treatment. She initially had a mastectomy of her cancerous breast when Julia was 2yrs and in the midst of Julia’s own chemo treatment, had a mastectomy for her second breast. And you think your life sucks! Think again and be grateful for what you have.
Heather was diagnosed with a rare triple negative tumour which equates to only 3% of breast cancers. This differs from the aggressive BRAC1 gene, which was made ‘famous’ by Angelina Jolie who herself received a double mastectomy and had her ovaries and fallopian tubes removed.
If you are the carrier of this BRAC1 gene, you have an 80%+ chance of getting breast cancer and a 55% chance of getting ovarian cancer. Although cancer is treatable, ovarian cancer is rarely detected until the advanced stages. A carrier of this BRAC1 gene does not have to consider ‘what if I get cancer’ but ‘when will I get cancer’.
One of the girls I was having coffee with, Mel*, has a similar situation. Her husband was diagnosed with testicular cancer at the age of 35yrs. Cancer is also prevalent in his family with both his brother and his nephew being diagnosed. His nephew has been through the cancer/ remission cycle 6 times in his short 25yrs. Every time, the doctor determines it terminal, he pulls through. Hundreds of thousands of dollars have been spent on his treatment, his parents have had to mortgage there house twice and the pain and suffering of everyone involved is immeasurable.
Of course money is no object when it comes to caring for a loved one diagnosed with a terminal illness. But imagine when the money runs out. Imagine having to tell your child “I’m sorry, we can no longer afford your treatment. We have exhausted all of the treatment options within our budget”
But it doesn’t stop with cancer. Congenital Heart Disease is also one of the biggest childhood killers and the cause (along with cancer) is widely unknown. Current research suggests that both cancer and CHD in early childhood is rarely inherited (<5%). It is believed that for the most part the cause of childhood cancer and CHD is multifactorial inheritance which implies a combination of genetic and environmental factors out of everyone’s control and unpreventable. But genetic mapping and finding hereditary links to these diseases is still in its infancy.
The girl I often consider more a sister than a friend had to face this journey when her first child was diagnosed with not one, but two, heart defects in the womb at the twenty week scan. Little Miss G had her first heart surgery within minutes of being born, and her second open heart surgery at six weeks old. Little Miss G will be in and out of hospitals for the rest of her life and is guaranteed more open heart surgeries in the future. When I posed the question of the proposition of love marriage and babies to Little Miss G’s mother, she came back with the perfect response.
“I have to believe that there are people out there who will have no problems falling in love and marrying my daughter. I have to believe this because I have to believe that my daughter is going to have the same rights and opportunities as every other 5yrs old out there”
Everyone has been touched by cancer and CHD in one way or another. We know how bad it is and how much pain and suffering it can cause family, friends and loved ones. Not to mention the trauma inflicted on the victim.
So this begs the question, “should we be asking our partner for a full Medical History before settling down and having children?”
Is a full Medical Check Up the new Pre-Nuptial Agreement?
I have always been a little bit anti pre-nup. It just seems to take all the love out of things – planning the divorce before planning the marriage.
So are pre-nuptial agreements and providing full medical histories loveless barbaric acts? Or practical measures to a worry free life together?
If you ask for a pre-nuptial agreement and a full medical brief, are you being selfish or smart? Practical or pessimistic?
Of course there is pro’s and con’s for both arguments. Love is meant to be unconditional “to have and to hold, in sickness and in health till death do us part”
So should you at least attempt to get to know someone with the possibility of falling in love before making the decision to leave them because of their potential future health problems?
Or would it be easier for everyone involved if you just ended it before it started. Does this make you heartless? Or gutless? Or does it make you sensible and reasonable?
I think we can all agree that when it comes to love – logic goes out the window. Therefore, if it is logical to get a full medical check, does that show a lack of love?
Should you always consider the percentages before making any life changing decisions?
Would you marry someone who had an 85% chance of getting an aggressive cancer? Would you have children with someone knowing there was a 50% chance that your child would inherit the same gene? What if it was 60% chance? 70%?
These are all huge life changing, strong moral questions, and questions I’m not sure I can answer myself.
And when it comes to your own knowable medical history, at what point do you disclose this to your potential life partner? Is date 1 too soon? Or do you wait till you’re both head over heels for each other before presenting them with the grim future of your shitty inherited cancer gene? Should we all be getting full medical checks? Adding them to our RSVP profiles, presenting the paper work over the fillet mignon you ordered on your first date? Carrying a card sized summary sheet in your wallet to the pub on a Saturday night?
After speaking to my fellow work colleagues, they all assured me that they love their husbands/wives so much that being hit with the cancer card now would never ever be a determinate of them leaving. But when asked if their current husbands/wives had told them date one that they had inherited a very aggressive cancer gene, would they stay – the majority said no. That’s a problematic statistic for anyone who was unfortunate enough to be born with an undesirable health concern. Are they unmarriable? Doomed for a life of loneliness?
Fortunately I think not. I have two friends who have recently been married. He is 33 and living with Cystic Fibrosis. An (as of yet) incurable genetic disease, that historically has a high mortality rate. But he has surpasses all expectations, diagnoses and prognoses and not only survived, but thrived.
His beautiful wife (who works for the Hunter Medical Research Institute) met her husband over 5yrs ago. She knew from day one what his condition was and what his prognosis would be and it didn’t change her wanting to be with the person she loved. To her, she was in love, and a chronic illness wasn’t going prevent her from marrying the man of her dreams. She has said to me
“Our life may not be ordinary and sometimes that sucks. But it is extraordinary and I would prefer one extraordinary day with my husband than a lifetime of ordinary days with anyone else”
At the end of the day, you would not wish a terminal, aggressive incurable disease on anyone. You just have to cross your fingers and toes that all of your loved ones remain disease free for the duration of their lives. But if not, that you all have the strength to get through whatever you are faced with. The people in this article have faced life hurdles that none of us dare even contemplate, and I wish them nothing but health and happiness in the years to come.
If you wish to donate to the any other the causes mentioned in this article, please click on the links below.
*Names in this article have been changed for privacy reasons.