At some point childhood cancer is going to have an impact on the mental health of the patient and their family. It won’t affect everyone the same or for as long, and there could be any symptom ranging from brief moments of sadness to full blown post traumatic stress syndrome.
On both occasions when my son was diagnosed we were given a folder of information and told not to look things up on the Internet. The folder contained lots of contact numbers and details of the planned treatment; names and dates of chemotherapy and if applicable proposed dates of radiotherapy and surgery.
However organised it seems at the beginning, every child is different. Treatment can be delayed due to infection, low blood counts and sadly in some hospitals even lack of beds.
Feelings of being “out of control” start to creep in. It is virtually impossible to plan anything. There is fear and anxiety not only for your child’s long term future but for the short term too. How will the chemo affect them? What will their blood counts be? They’re not eating enough, or eating too much… You watch your child in pain, suffer terrible fatigue, see the colour drain from them, feel their dread at the thought of another needle.
As if seeing your child go under anaesthetic isn’t bad enough, waiting for hours next to an empty hospital bed while your child is having surgery causes enormous stress. Your heart leaps when you are eventually called to the recovery room. I’ve cried buckets of relieved tears beside a theatre trolley and in ICU.
Being an oncology parent can be very isolating too. We were very grateful to be given a room at Paul’s House, a CLIC Sargent Home from Home, so that we could be near my son and stay together as a family when he had his major surgery. On most other occasions though, a hospital stay means being apart from loved ones and friends.
I have new friends now. People I have met on the ward and friends from an online community of oncology parents. Friends who understand only too well… I have some very good and supportive family and friends from other walks of life too, but you can only truly understand any experience if you have experienced it too. Even then, you cannot assume to know everything.
While the ordinary world continues to turn, the world of an oncology parent has stopped for a heartbeat or two. Just enough to throw it out of sync with the rest of humankind. The old life has gone. Some can embrace this new life with great positive energy and others have overwhelming grief. I think I’m somewhere inbetween.
Since writing this I have read a brilliant post by another oncology parent, Mrs Brown, about being happy. Her idea that happiness is based partly on how secure you feel in life explains it all perfectly. When someone you love suffers a serious illness it puts your security into question – or rather, your view of how secure your life is.
Follow the link to read it for yourself:
Be happy ~ is it that easy?
Whilst pottering around the other morning, I heard a snippet of a TV programme discussing the idea that schools should be teaching children how to be happy. I nearly spat my coffee out, I was speechless. Really, it’s that easy, kids if you’re not happy, no fear, teachers are here. The definition of ‘happy’ in […]