“We have found something not very nice in Amber’s head” were the words that introduced us to the world of childhood cancer. From then our lives were irreversibly changed. Time for us can be divided into two periods; pre-diagnosis and post-diagnosis.
For myself and Amber’s Dad, Mark, the future we had foreseen with our first baby, only eight months old at the time, would instead be dominated by appointments, brain surgery and chemotherapy. My sanity would be eaten away at by the constant worry for my daughter’s heath and ultimately, her life.
Amber needs regular scans to monitor the progress of the tumour and the success of the treatment. As soon as the letter lands on my doormat with the date for her next MRI, it begins – ‘scanxiety’. It’s a stomach-churning, heart-stopping feeling that swirls with every possibility of what the doctor could say. So many scans have brought us the news that chemotherapy isn’t working, that despite the sickness, the hair loss, the tumour is still growing. It’s not the unknown I fear - it’s the known. I’ve had my world fall down and I’ve tentatively built it up again. But I am so aware of how rocky the foundations are.
I try to be the biggest support to Amber I can. We don’t hide the situation from her, but we don’t wave it all in her face either. She is wise for her eight years, she has grown up strong in the face of so many difficulties. Hospital appointments for her are a rollercoaster. She feels the love from the nurses and her fellow patients but she fears the hands on administration of the chemo and its debilitating side effects. Her anxiety got so bad at one point I was having to medicate her to get her into the hospital. She would shut down, not speak, not play, just lay eyes closed wishing she was anywhere else.
Fundamental to coping with these eight years of life post-diagnosis has been the support we have received from those around us. February 4 is World Cancer Day, and this year, CLIC Sargent – a charity that has supported us throughout our cancer journey – is calling for people to band together when cancer strikes. I am so thankful for these acts of support from those around us. The meals we have had cooked for us, the play dates Amber is offered and the people who have helped with our son Seth, who was born into the middle of this wild life.
One of the biggest sources of support is found in the other parents who face their own battles with their children, the other cancer parents. When you receive bad news, they understand because they have been there. They live the daily fears and grieve for their own lives and the plans that diagnosis snatches away. They are your company during days on the wards while your child has treatment, and they stop you from feeling so alone. It’s easy to lose your mind when you look at your child with poison coursing through their veins, but other families pull me out of those dark times. You have to keep it together for your health, but mainly for your child.
One day on the wards at Sheffield Children’s Hospital, I was introduced to a lady from CLIC Sargent. She was to be our social worker from this incredible charity that supports families like ours who have received a cancer diagnosis in a child or young person. When it feels like all the puzzle pieces of your life are scattered on the floor, they help you get them back into order. That emotional support has been a lifeline. Through the team we have also been able to access short breaks, and grants which help pay for the additional costs of things like daily hospital meals or parking. They helped us fill in forms for benefits as we were entitled to financial support I never even knew about. The application forms for Disability Living Allowance are soul destroying. To sit and dwell on just how many things your child cannot do compared to a child of their age without that cancer diagnosis is heartbreaking. It is like getting the diagnosis all over again. But CLIC Sargent recognise that and step in to do the leg work. It meant I could concentrate on the important things, like Amber’s health.
Every small gesture is important to me, to us. I can sleep better at night knowing the little things are taken care of so I can get my strength to fight the big thing in my daughter’s head. When cancer happens, love, kindness and friendship wraps round you and holds everything together. I know those people can’t change the outcome of what will happen they certainly help shape the journey we are on.
CLIC Sargent World Cancer Day bands are available from all Morrisons stores. On World Cancer Day itself, Morrisons branches across the country will be fundraising for CLIC Sargent, their charity partner until 2020. To join CLIC Sargent’s fight for young lives against cancer, visit clicsargent.org.uk/morrisonsdonate