Every year in the UK, 4000 children and young adults develop cancer. Every day 11 families receive this devastating news. Though generally speaking 70% of these children now survive, the fight for their survival tests families to their limits – physically, emotionally, socially and financially.
As a parent of a child with cancer (in remission but nevertheless still "with some tumour in") my journey is somewhat unique as is every parents journey when their child has cancer. You really do ride the gamut of emotions, highs and lows can be far apart or come thick and fast. One minute your child is doing well, next minute comes a temperature, hospital then ITU. This can occur in the blink of an eye. During and after treatment you can feel as high as a kite sometimes or at rock bottom. I have often attempted to describe the emotions you go through when your child has a life threatening illness hanging over their head. Fear, helplessness, nausea, sadness, resentment, depression, panic, listlessness, lost, exhausted, despair, alone, angry, guilty and confused are just a few of the negative adjectives I'd use to describe a small amount of the feelings parents may feel on a daily basis. It's tough, hard to describe and we often feel isolated because the journey is classed as rare and therefore others can't relate unless they have walked the path themselves. Obviously I now know many people who've walked that path so it's not rare to me, but to others they will likely never meet anyone who's child has had cancer.
A while back I started up a Facebook page - just for parents (and close relatives) of cancer patients (kids really). The main reason was because I wanted the chance to meet up (albeit virtually) with people who had been through what I had been through and for there to be a platform for us to talk, cry, vent frustrations or just laugh. Whatever we wanted to do - I wanted us to be able to do it in private. It had been implied in another group I was in that a person can't know how it feels to have cancer without actually having cancer themselves. Therefore a parent couldnt really understand fully what its like to fight it. To a person watching their child battle this monster, this was astounding to me - verging on ridiculous. When your kid has cancer (or indeed any life threatening illness) you might as well have it - you absolutely breathe it, feel the pain in your very soul as if it was you and would swap places in a second if you thought you could. The heartache and pain is all consuming at times and takes over your entire being and life. So, I created the group "My Kid Has Cancer" and since then it's gone from strength to strength. We have 150 members now (which is sad to think really) and we regularly post and chat. I have found this group absolutely, without a doubt, the thing that's kept me sane during my own journey (which still continues). There is always someone there who understands where you're coming from with any vent or question. We have members who have kids who are at the start of their journey, in the middle, finished treatment, relapsed or (sadly) passed away. We are all in it together, supporting each other through thick and thin. We vet everyone who requests to join to ascertain their connection to childhood cancer because the very nature of the group is private. This group has been a godsend to many of us.
Last week I was interviewed as part of our local radio station's Cash For Kids day - this is on April 26th and is a fundraiser for the wonderful Clic Sargent charity who helped us so much when Niamh was on treatment. They provide a home from home (Clic Villa) in Edinburgh (next to the hospital oncology ward) where a parent can sleep and go for a break enabling you to be there for your child whenever they need you. Paul virtually lived there when Niamh was first diagnosed. This wonderful place was invaluable to me as I needed him with me, I could barely function at times. Clic Sargent are there when you need them most, supportive and dependable.They also provide a social worker and outreach nurse amongst other things. All so needed when your child is undergoing cancer treatment and you don't know your arse from your elbow. Which I often didn't!
Our story is featured on the website for Forth One radio and snippets of my interview (and other families interviews) will be aired throughout the fundraising day (April 26th) to generate donations. Please have a listen if you can - sorry if I sound like Jimmy Nail, hate my voice when it's recorded. Itll not be hard to work out which one i am. Geordie voice on a Scottish radio Station.
Here's the link.
Recent pic from our holiday - brave kids