While skipping through social media I caught sight of Russell Howard’s interview with Rob Delaney, reflecting on his son’s brain tumour and the first anniversary of his death.
My daughter was first diagnosed with cancer at 20 months old, over the years she went on to experience two more relapses of the disease but miraculously survived and is now 28. I never anticipated her surviving into adulthood but equally I could never give much headspace to the possibility of her dying. That’s not strictly true, I had given thought to every detail of her funeral, but not what life might look like without her.
My husband was not in my life when she was ill and my youngest daughter was too young to recall how surreal life was back then. While it is difficult to fully explain the feelings and thoughts attached to such an unnatural state of events, I am immensely grateful that they were spared.
Cancer and child are two words that do not belong in the same sentence and understandably strike fear into people. What people don’t often realise is that it becomes your misshapen life. My daughter’s treatment episodes began in the early Nineties and continued into the Noughties. At that time lengthy spells in hospital were standard. I can vividly recall the white holdall which was solely used for the hospital, as I somehow felt it was tainted. The sight of the holdall used to prompt even our dog to slope off with a look of complete despair.
Arriving on ‘the ward’ was mixed, although there was resistance to returning there were also feelings of safety and relief. In my mind’s eye I can still see the tapestry on the wall of a teddy bear and underneath was written, “grin and bear it.” There was a room on the ward where the consultants spoke privately to parents, which was labelled by parents as “the bad news room.”
Early on, one of the mums said, “If you need to cry, we tend to go into the bathroom and turn on the taps, then the kids can’t hear.”
I used to look out of the window over Leeds and watch the cars moving and feel pure rage that they didn’t all stop in the realisation that my sweet little girl was laid in a bed suffering from this hideous disease and treatment.
The informal support network that formed amongst mums was incredibly powerful. Women of different ages from varied backgrounds forged unlikely friendships where we were unaware of preferences in music, food, hobbies but had intimate knowledge of deepest fears and relationships. We coexisted in a medicalised cancer bubble that felt safe. Over such an expanse of time I saw children recover, I also witnessed many dying. There existed a survivor’s guilt when a child was lost and a difficulty in speaking to parents that we all experienced from others “outside.”
I could cope with distress, outrage and anger, from friends, strangers and family, in all honesty I wanted it. I objected to being given statistics or told what “wonders” could be achieved by the medical profession. Well-meaning people talked about “staying positive,” which used to light a fire of fury in my belly. Life is consumed with leaping onto uneven stepping stones of treatment cycles, illness and basic care. Life doesn’t stop, I had my eldest daughter to care for and manage her anxieties, work commitments to juggle, bills to pay and loved ones to keep updated. During the third treatment episode I was pregnant with my third daughter. There was little space for positivity or negativity, it was just about putting one foot in front of the other.
Even now people say, “I don’t know how you coped?” My general response is, “It was just our life.” Which is true, it became the norm, in some way. People presume you are in a permanently altered state of anxiety and stress but this was not the case. There were celebrations, laughter and love. Looking back, it was an intense existence but not always in a negative way.
We are fortunate, and Rob Delaney’s interview was a glaring reminder of this.