‘Giving others the help I wish I’d had’
As we approach Childhood Cancer Awareness Month, Pat Hayes tells how her own experience inspired her to help other grans of children with cancer
Every day Pat Hayes speaks to grandparents around the world whose stories transport her back to a lifechanging moment.
It was 2010 and Pat’s three-year-old grandson Thomas was full of life but over a few months, he began losing weight and having regular nosebleeds. The doctors put it down to a virus or problem tonsils and put him on the waiting list to see an ear, nose and throat specialist.
In the meantime, Thomas had a sudden coughing fit one night and coughed up something that was taken to A&e and tested. The doctors revealed it was part of a tumour that had broken off and found its way into his windpipe. He was diagnosed with rhabdomyosarcoma, a rare soft tissue cancer that affects fewer than 20 children in the UK annually.
“As a family it felt like our world came crashing down,” says Pat, 57. Thomas was immediately admitted to hospital and began chemotherapy the following day. However, his tumour was so aggressive the oncologist advised he have proton beam therapy, a pioneering cancer treatment not currently available in the UK. So the family made the decision to travel to Florida where Thomas had proton treatment five days a week with chemotherapy at weekends for eight weeks.
“It was so hard watching him go through it as sadly, the proton therapy burned his face. There was an awful moment when he was being sedated to go for treatment and he just looked at me and my daughter and said, ‘What’s happening to me?’ It was heartbreaking; what can you say to a child who doesn’t understand why you’re putting him through this?”
obviously, the whole family was rocked by the experience, but as a gran, Pat found it exceptionally hard to know where to turn to channel her own feelings as she was trying to be strong for her daughter. “Watching my daughter struggle was the worst. I did everything I could for her emotionally but I just couldn’t fix the problem. I knew if I let my feelings out it wouldn’t help her. I didn’t know what to say and I just wished I had someone I could talk to who would understand my situation.”
Hearing her daughter had found a really useful online support group for parents of children with cancer, she started looking around for something similar for grandparents but nothing came up. That’s when she decided to set up her own support group on Facebook called, Grandparents of Kids with Cancer, which has since become a registered charity.
“I initially thought if just a couple of people join I’ll at least have someone to talk to but it quickly gained interest and now there are more than 500 members from all around the world.”
The support group is a safe space exclusively for grandparents of children who have cancer, or have had cancer, to share their stories, air worries and give advice. There’s also a sub group for grans who have very sadly lost their grandchildren to cancer.
“Members can talk about anything and many of them have said the group has been a lifesaver. Because there are members from around the world there’s always someone around to lend a listening ear at any time of day or night. And it’s not just doom and gloom, we also try to lift people’s spirits by sharing photos and good news. It’s like a big family.”
While little Thomas did get better, it was impossible to get rid of the tumour completely because of its position in his skull and so the family face the agony of an MRI scan every year to check if the tumour has become active again.
Because of the cancer treatment, Thomas has also been left with a number of health complications including nerve damage and cataracts and will have to have hormone injections every day until he is 21 because of damage to his pituitary gland.
It’s hard, but throughout all this, Pat says managing the online support group has been a great way of focusing on something positive.
“It’s helped me to feel as though something good has come out of something so awful.”
Now Pat’s big dream is to reach even more grans who might need help by raising money to set up drop-in information sessions where grans can get together.
“The main message I just want to get out to other grans in the same situation is just don’t give up. You just have to get your head down and keep going and if it doesn’t get better, then there are people there who know what it’s like and can help you. I want people to know, you don’t have to do this on your own.”
■ Visit www.facebook.com/ groups/grandparentsofcancer kids to join the online support group. Find out more by visiting www.grandparentsupport.ninja
DID YOU KNOW September is Childhood Cancer Awareness Month raising awareness of the fact 12 children and young people every day get the news that they have cancer