This was the scenario my husband and I faced in 2013 when our eldest daughter was diagnosed with lymphoma.
So that most pressing of questions - what now? Well in truth the critical nature of our daughter’s condition meant she required immediate attention, so in many ways, there was no time to think let alone panic because everything was moving very quickly. What became abundantly clear however was that Bibi was now in the hands of the professionals and they got to decide what would happen next.
I think it was being faced with this overwhelming feeling of helplessness, with no way of controlling the outcome, that determined our response really. Both her dad and I strongly felt that if we couldn't protect Bibi from all the procedures she was going to face, then at least we could protect her from the environment, the language, the protocols - basically the grown-up medical world she had just been catapulted into. We knew instinctively that Bibi’s ability to cope with her illness would depend on how she saw us coping, so it was to that end we decided not to focus our attention on her medication and surgery, side-effects and blood counts - we would leave that to the doctors, instead we set about creating our own disease-free world, channeling all our energy into lifting her spirits, keeping her distracted and reminding her she was a 15-year-old girl and not just a patient. That was our only plan - to normalize the abnormal and take the fear out of it.
We never spoke about it, referred to it, or even said its name. Our only objective throughout this whole period was to ensure that Bibi never ever thought of herself as someone who was ill and would never ever think that she would not get better. This was not about being in denial; this was very much a conscious decision we made to focus our attention outwards. So in our case, this took the form of simple routines and rituals that give us a sense of purpose and a much-needed focus and that not only helped temper our anxieties but also gave us a modicum of control when really we didn't have much.
I would love to tell you we are an exceptional family, with extraordinary levels of courage and strength, but we aren’t. Go into any hospital ward up and down the country and you will find similar scenes. During our time at the Marsden, we shared our ward with a host of families all going through similar experiences and dealing with it in much the same way. I remember the beautiful mum of two who always bought her slow cooker in with her and busied herself in the communal kitchen, cooking up fragrant stews while her youngest son scootered up and down the corridors, closely followed by his older brother wheeling the line he was attached to. Or the young parents who bought their shivering son into the TV room one afternoon laughing and joking whilst tenderly wrapping him up in blankets, all the while diverting his attention with their talk of football and friends and what they were going to eat for dinner that night and even though you could see they were under a huge amount of strain and their son was gravely ill, their focus was on everything but his illness. Or the young parents whose daughter was coming to the end of her treatment and who kindly shared their knowledge and insight, recommending creams and supplements that had helped them and which they hoped might help us too.
So what happens when you hear the words, ‘your child has cancer?’ Well, the reality is life goes on. Parents go to work even though they may have slept on a hospital floor the night before. Packed lunches are made, children are taken to school, parent’s evening appointments are kept, carol concerts attended to, clothes are washed, food is bought and hands are held while tubes are inserted and more drugs administered. Don’t get me wrong, some days it would get the better of us. Days upon days of watching our daughter unable to keep down food, unable to get out of bed, covered in sores, in excruciating pain from a bout of shingles, a laboured stem cell procedure, countless blood transfusions and rehospitalisation, time after time. Bibi was gravely ill, but she was still Bibi, Bibi who liked to paint her nails and watch films. The same Bibi who still teased her dad laughed and joked with her sisters. charmed the doctors and nurses with her gentle grace and determination and was forever telling me off for embarrassing her when I made a fuss.
If I’ve learnt anything from the experience it is perhaps this. That life is random and chaotic and despite our best efforts to control our world we can’t and perhaps we shouldn’t try. We were lucky and I count my blessings every single day. I’ve lost family and friends to this dreadful disease and I know the outcome isn’t always positive. If I’ve taken anything from the experience it’s probably the thing I used to say to Bibi almost every day and that is this. ‘You might be stuck in a hospital right now, you might have a tube in your chest and a drip in your arm, you are certainly bald, in pain and are finding it difficult to eat. All these things are happening to you and you have no control over it, but what you can control is how you think about your situation. No one can control that.’
In the words of Robert Fulghum an American author and Unitarian Universalist minister who articulates what I am trying to say so much more eloquently,
“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.”