The playroom is not for us…

Comic Relief, Children In Need, Sport Relief, Text Santa – the list goes on. All these wonderful shows do an amazing job at raising money and awareness for people in heartbreaking situations. We have all seen the short films that they make documenting the charities and people they support; street children in Africa, mental heath services, children in foster care, people who are homeless and, of course, children with cancer. I, like everybody else, have watched these films, cried and thanked whomever is controlling the universe that isn’t us. Now I feel like I didn’t thank the powers that be quite loud enough!

These films and charity events, without realising it, have influenced some of my understanding of cancer. In the past I though that cancer is awful, but children and adults are treated and the families are supported. Not just that, the children who are facing adversity, do it with grace and humility. Yes they are in pain, yes they get upset, yes they struggle with what is happening to them, but through it all they are calm. They are surrounded by loving parents who are able to nurture and reassure them. They take part in activities that keep them stimulated and entertained. They may hate their treatment and all the things that go with it, but accept it because they know it will help them. In short, they are bravely dealing with the worst possible situation while still smiling. Needless to say, I may have misinterpreted these films…just a little.

The reality of our fight has been very different. I have a friend whose family have suffered the same trauma as us. When talking about her experience, she said that they were categorically not the family that went ‘skipping and jumping down the corridors to the play room.’ It was a lightbulb moment. Until speaking to her, I had been feeling the same and was really worried about it. I felt like we weren’t normal – that Eleri isn’t coping and we were already seeing detrimental psychological effects. Having now spoken to the nurses, support workers and doctors, we know that she is reacting in a perfectly normal, all be it very loud, way. It’s ok not to want to skip into the arms of a play worker that offers a wonderful craft project. Who wants to get sticky fingers and ink on their hands when have recently been told they are seriously ill? It’s ok not to like the people who are trying to cure you. In her little world, all doctors and nurses have done is give her bad news and make her have painful operations. They have taken her away from her friends and made her stop going to her clubs. Worst of all, they give her ‘medicine’ that not only makes her nauseous but will make her hair fall out. Let’s be honest, I think the resentment is completely understandable.

When we are in hospital Eleri is miserable and angry. Not just that, she has no interest in the playroom, play workers, storm troopers (yes an actual storm topper came to visit), spider-man (ditto) or a so called ‘magic man’. She absolutely hates that her happy life has been interrupted by this disease. She just wants her leg to stop hurting and go back to school. There is no grinning and bearing her pain, there are just screams and tears. Sometimes she is so angry and upset, all she can do is shout at us. Sometimes she can’t bare to be parted from me and we end up with a nuclear meltdown if I dare leave for a toilet break. All we can do is keep our composure and reassure her that all will be ok. Everyday is a challenge to keep her from slipping deeper into darkness. We have to be strong for her, but seeing her like this sometimes renders us incapable of helping her find the light.

It is during these bleak moments that we need support. The very people that Eleri detests are the people who help us the most. The medical staff are patient, kind and empathetic – basically absolutely wonderful humans. The TV got that bit right! They go out of their way to make sure Eleri is getting what she needs and are very attentive. They bolster our spirits and reassure us that we are doing our very best in a particularly arduous situation. This dichotomy Eleri can’t see and she remains largely ambivalent to them. It’s upsetting to see her react like this, but ultimately understandable.

In the face of this particularly difficult customer, the staff always remain positive and help us laugh away the tears. Laughing is so important and you have to find the funnies, even at a time like this. We couldn’t possibly go through it all without laughing – life would become too desperate. It’s the times that the laughter spreads to Eleri and we glimpse our gorgeously unique girl, we are reminded what we are fighting for. Failure is not an option – optimism, positivity and love are the roads we must take to give her normality once more.

I have no doubt that as we get deeper into treatment this will all become normal for her and she will become less anxious. She may even venture to the playroom happy to ‘have fun’ or smile at the nurses as they change the dressing on her Hickman line. We may yet become the family skipping down the corridor into the arms of the play specialists. Until then it’s reading, top trumps and TV.