It's Not a Competition...

Legacy projects are something that keeps a bereaved parent focused. The energy that should be spent caring for our lost child is in need of a place to go. As for any cause, advocacy is all about passion for a cause and can result in funding, awareness, politic change, etc.  Any cause related to my son, is something I am passionate about.

In the past I have signed on to physical challenges (and I hate exercise) to raise money for charities that supported me and my family through our cancer battle. Building a team, climbing 5000 stairs and asking friends and family to sponsor me in the challenge was a goal that kept me busy in the lead up to winter. Important that we raised thousands of dollars but really, that was all about dedicating my efforts and time to my son, Tom. 

In 2020, Covid-19 interrupted my usual legacy plans and I was a little stuck on what to do.  I am a member of a Bereaved Parents Facebook group which showcases some wonderful ideas for community advocacy and I started to become inspired.  

September is Childhood Cancer Awareness month and I found my challenge. I committed myself to carrying out a daily task in recognition of this month. Advocating, educating, raising funds and awareness.  Wearing a gold ribbon every day and doing it all in the name of my hero, Thomas. It wasn’t a competitive run or putting myself through physically harsh training but it was a meaningful goal and I wanted to do as good a job. As good as if it were a high stakes comp. It’s not a competition … but it was for me.

So in terms of ‘raising awareness’ I was involved in radio, internet media and social media interviews. Every few days I would post about paediatric cancer statistics and other topics such as finding perspective and asking people to consider what really goes on for a child fighting cancer. I shared information with people at my workplace and in the community. I know there are some that are constantly corresponding with their politicians calling for increased funding and hospital beds and other programs to be put in place. I will join that fight down the track perhaps but for the moment, social awareness was my main goal in advocacy.

Fellow bereaved parents shared pictures of their cars covered in the names and ages of children who had died from cancer. Others wrote these names on painted gold rocks and left them along the paths of their favourite park for people to see. My Tom’s name was amongst them and I adored the idea of strangers saying his name and remembering him in foreign places.

In terms of ‘action’ I started a fundraiser for ‘Cure Brain Cancer Foundation’ on Facebook and also called for the people of my world to donate blood. 30-40% of all donated blood is dedicated to cancer patients and Tom needed so many transfusions. This one was particularly meaningful. All of this was fine and I felt good about these acts but my favourite ‘act’ was to send gifts from Tom.

Wrapped in gold ribbon, I sent presents, flowers, books, chocolates, wine and other nice stuff to the boys’ teachers at school.  In the card, I included his picture, an explanation of his fight and stats about Childhood Cancer Awareness month. I was clear that this ‘random act of kindness’ was in memory of Tom’s kind soul.

I dropped off gifts to the nurses in Oncology and Emergency, with the same note. This week I will send a hospital pack for a mum living on the oncology ward with her child which contains toiletries, vouchers, a notebook and a card. I have left gifts of Lego and the sorts of toys that Tom loved for young children on the ward to open.  I prepared care packages for homeless people - with food, juice, a little cash and a note about Tom.

I do not want anything in return for these gifts. Just for them to know Tom, to know about the importance of the cause and to create some joy for someone on that day. Some who knew us, wrote to me and thanked me. Some followed the idea and donated to charity because I had reminded them of the month. The strangers who received a gift just gave me the most grateful smiles and it felt so good. I felt that Tom was with me in our little visits of kindness.

I recently watched a brief talk from Simon Sinek outlining the power of kindness. He asserts that human beings get a release of oxytocin when giving, receiving and witnessing acts of kindness. He goes on to explain that this chemical oxytocin is responsible for the warm feelings and connectedness we have with each other. It binds human beings.

My favourite part though was when he said that the more oxytocin we have in our body, the more generous we become and so with every act of kindness, more will follow. He closes with the final consideration – it has to be genuine.  Is it still genuine if I link each act of kindness to Childhood Cancer? Is it still genuine if, in a way I do get something out of it because I love sharing my Tom? Oh well, it is what it is. I’ll take my oxytocin hit whatever way it comes.

As I look back on this month though I realise that this level of daily advocacy is unsustainable.  I am exhausted. I don’t know why, these are small things to do. Gifts and posts. Cards and photos. Perhaps because I am constantly thinking and writing and acting in the name of Tom he is even more on mind. My grief is productive but it is at the forefront of each day so much more. And grief can be draining. 

So there are rewards and challenges with that level of advocacy but I am so glad that I did it and I am determined to continue the challenge for the rest of the month. I also learned a lot from this month of awareness. Finding information to share with the world about childhood cancer brought up a lot of questions for me.

The first is that I notice that in terms of the public understanding of cancer – adult cancers are itemised in separate causes.  Breast cancer, bowel cancer, skin cancer, etc. There are numerous types of childhood cancers such as medulloblastoma, osteosarcoma, neuroblastoma, etc but these are out in the world only under the catch cry of ‘childhood cancer’.

This then leads me to question, is the very act of clustering childhood cancer types into one cause resulting in less funding? Across 2016-2018 there was $252 million spent on cancer research in Australia with 74% ($187m) of that coming from the federal government. (source: www.canceraustralia.gov.au).

Of that $187 million only $5.8 million was dedicated to childhood cancer. That is approximately 3% of funding. If each childhood cancer got its own spot on the graph perhaps it would appear more of a problem. Maybe a few more buckets would get a few more pennies? Don’t get me wrong, cancer sucks how, where and whenever it comes. It’s not a competition but …. maybe it is?

Does the call need to be for more funding across the board or is it about how the pot is split?  Should more funds be allocated to specific types of cancer that have seen no improved outcomes for decades, like medulloblastoma? Should it come down to the population size of sufferers? Should it come down to celebrity endorsement and the independent charities that can afford and influence a greater space in the world of donations and philanthropy?

My next question came when I considered how ‘causes’ are marketed in society. What gets the attention of people? What makes the most impact?

If we look at how other awareness campaigns are run, there are some clear trends. The tobacco industry must now ensure the public are aware for the health impacts of smoking.  There are ghastly images on every packet of cigarettes, clearly illustrating the possible outcomes. This is confronting but effective. The public can’t help but be aware.

In the fight against the road toll and the call for safer driving practices, the advertising campaigns have shown us twisted cars, crash victims strapped to wheelchairs and parents opening the door to devastating news. A nightmare is carefully captured and advertised to the community in the hope that it will have an impact on behaviour. It’s confronting but effective and people are aware.

If you think of how children with cancer are portrayed in the media, predominantly you will see beautiful, happy children surrounded with sunshine, colour and smiling faces. The only way the audience knows these kids have cancer is why? They have no hair.

I don’t deny there were times when Tom was happily smiling in the sunshine but there were a lot of times when he wasn’t.  He was sick, feverish, sapped of strength, unable to move, too tired to even cry.  Thomas endured pain, nausea, fatigue and boredom. Constantly hooked up to fluids and antibiotics and fighting infections – there was far more time in his hospital bed than at the park.

So, why do we show the sunshine days in the park but not the horror of the intensive care unit? We show our preferred outcome instead of the reality. How does that make sense? Perhaps the market research suggests that people will too easily turn away from seeing children suffer. But they are suffering. Perhaps the focus groups prefer the idea that the worst thing that cancer does to kids is take their hair. But that is not the truth. There are far worse things that cancer can take.

Marketing these issues are important and a lot of work goes into them. It’s important we as a society have an understanding all of the terrible things in the world that need fixing. Road fatalities, lifestyle choices and health, cancer…. It’s not a competition…. but why is it that the rules surrounding publicity appear to change according to the issue? Do people take childhood cancer seriously when the kids looking back from the screen seem to be doing just fine.

My final question came surrounding the idea of comparison and guilt. I posted one night asking for people to consider their perspective, particularly in the life and times of Covid. It went like this:

It's exam time. Students are stressed. People worry it's too much for them, all the pressure. It's coming up to formals and graduation ceremonies that will look so very different to the traditions we are used to. People say it's not fair. 

I think if kids are stressed about exams, at least we know they value their outcomes. They care how well they go. They are getting an education. I know celebrations will be different but at least there is something to celebrate. A fancy dress, a piece of paper, a future for each young person growing up into
the adult they are meant to be.

I wish that people could change their perspective. To know how lucky they are. There are no exams in a war-torn country in a bombed schoolhouse. There is no formal or graduation for a child who died of cancer at the age of 7. 

There is no greater gift than our life and so please find a way to enjoy it whenever you can. #perspective #childhoodcancerawareness

I also added a poster image that included statements like: Cancer doesn’t care if it’s Christmas. Cancer doesn’t care if it’s exam time, etc…

I had a conversation about this with someone and they suggested I may have taken my perspective too far. Was it fair to compare the disappointment of a stripped back graduation ceremony to cancer and death? Was I insisting everyone feel some level of guilt for having healthy, living children? Or was I asking people to step back and find the positives in a difficult and uncertain time. Does it end up being both?

War and death are big ticket issues compared with a history exam or a formal with no dancing allowed. Is it comparing apples to oranges?  Maybe it is. In the end, my intention was not to make a competition about what is worse. Cancer beats exams any day on the scale of horrible things. My intention was to remind people that there is good in our lives even when it seems like the end of the world.

Tom and I became so skilled in finding the good in each day – even when some days were atrocious. And that is a good thing to practice. A skill to teach our kids when their teenage lives feel overwhelming and unfair. So, I stand by my perspective. My perspective has been through more than some others. If I can find the positive than is it unreasonable for others to do the same. It’s not a competition…

So, as I conclude my month of active advocacy and kindness next week, I reflect on how it all went and here are my ‘takeaways’:

- I have learned a lot and know I have much more to learn going forward.

- I have adored spreading joy.

- It is not sustainable in a daily pursuit but still something I will engage with in the future,  

- Cancer research should not be a competition but when you’re invested and grieving your child, you wish more could be done to save these innocent kids.

- I love sharing Tom.

I leave you with this …. each year I invite you to join me: Go Gold in September for Childhood Cancer Awareness!