Mik's story

The luck of the Irish: My journey with neuroblastoma

Mik Scarlet, broadcaster, actor, journalist, musician and disability rights expert, shares his story to give hope to children and families affected by neuroblastoma. Read his heart warming story about his life with and after this childhood cancer.

Mik’s early years

Mik with his parents in 1966

On August 18th 1965, after three years of trying for a child, my mum and dad celebrated the birth of a much loved bouncing baby boy, me.

They were overjoyed, but it slowly dawned on them that something was wrong. I started to constantly cry, or scream as my mum described it, yet she kept being told she was a panicking mother and that I was picking up on her worries.

It was only when I stopped crying, became limp and started finding breathing hard that anyone took notice.

My mum took me to she an old friend who was an ex-district nurse. She immediately said we need to get Michael to a hospital NOW! Off they went and within a day I was in Great Ormond Street Hospital (GOSH) under the care of a leading oncologist, Mr LG Capra. He informed my parents I was hours from death and I was rushed into surgery.

“This was my first experience with something that has flowed throughout my life, luck.”

If my mum hadn’t had a friend who believed her when she said I was ill, who had the medical knowledge to get others to listen I would have died. If I hadn’t found myself under the care of such a leading expert in cancer I also doubt I’d have made it. Lady luck was on my side.

After the surgery, it was discovered I had Adrenal Neuroblastoma. While it was the size of a tennis ball inside my young body, it had grown into a bell shape, missing my organs and spine. The surgery had removed most of it but I would need radiotherapy and chemotherapy too. Remember this is back in 1965 when treatments were few and far between, but everyone insisted I should be given every chance to make it.

Trialling a new chemotherapy drug

“The truly luckiest thing about my life was that my mum was my mum. She raised me to know that I had been lucky to beat cancer, but that this should show me that life is precious. ”

Again, luck stepped in. Mr Capra had just read the latest issue of The Lancet, the medical profession’s magazine, which featured a call for patients of childhood neuralgic cancers to join a test for a new chemo drug, Vincristine Sulphate. He applied for me to join this group, and had to ask the Home Office for approval.

Along with six other children at GOSH, I was given the chemotherapy, along with some aggressive radiotherapy, and everyone hoped for a positive outcome. Even if it was positive, my parents were told to expect no more than five years with me. This year I celebrate my 55th birthday.

If I tried to list every time luck played a part in my life, this would be a book (any publishers reading, this is a huge HINT!). The truly luckiest thing about my life was that my mum was my mum. She was by my side through every battle of my childhood, and until I met my wife, every adult battle too. She raised me to know that I had been lucky to beat cancer, but that this should show me that life is precious.

Waking up paralysed

Mik is now a broadcaster, actor, journalist, musician and disability rights expert!

At the age of 15, a side effect of my chemotherapy caused my spine to collapse in my sleep. I went to sleep walking and woke up paralysed, but luck still played it’s hand as I was sent to the RNOH Stanmore, under the care of a specialist who saved my life.

I left hospital a wheelchair user, but with support of my mum and brother, I rebuilt my life. I used the time it took to recover from this period to learn to play music, leading to a career in music.

One night a TV producer on a stag night was at a gig I was playing. My computer blew a fuse and while I repaired it on stage, I waffled. He was well impressed at how funny I was and offered me a TV screen test.

The role of Luck

“I am the sum of the parts that came together to mean I am still here, aged 55 and still going strong. I feel those things all coming together was luck. I also know that not every child is as lucky, and that makes me truly thankful. ”

It sounds silly I know, to lay so much at the feet of luck when so many other factors played a role in my life. While I know I owe so much to so many, I think it’s vital to know that I was just lucky to survive.

Cancer is a pig of a disease. At this difficult time, with Coronavirus spreading all over the globe, we hear the language of cancer survival becoming widespread.

I didn’t beat cancer. I didn’t fight it. I was given the best treatment available, for a cancer that had developed in a way that made it easier to treat and I made it through. I had an amazing mum who supported me through, an amazing brother who was at my side when I was ill in my teens. I am the sum of the parts that came together to mean I am still here, aged 55 and still going strong.

I feel those things all coming together was luck. I also know that not every child is as lucky, and that makes me truly thankful.

The thing is about luck is, you can help others get some of their own. I have been supporting Neuroblastoma UK for many years. When my mum wrote her Will, she asked rather than flowers than a donation was made to further the research funded by Neuroblastoma UK. Sadly she died at the end of 2019, and she raised £500 at her funeral. While my brother and I will miss her so much, it’s so like her to leave a legacy for the future, so hopefully other children will have the luck I did.

I’ve just finished giving up chocolate for March as part of the Great Give It Up, which was no mean feat for a chocoholic like me! The money I saved was donated to this brilliant charity. If we all do our bit, hopefully more luck will touch more children living with neuroblastoma, and more families will get to grow up together just as mine did.

Best of luck to you all, Mik

PS. Just occurred to me I totally missed off my dad was Irish. Title makes more sense now maybe?