When I started writing this blog it was to write about how we as a family and parents are dealing with cancer arriving in our lives. I didn’t want to detail every step of what Eleri is going through, there are lots of blogs, websites, leaflets and books about the journey of the individual with cancer. There didn’t seem to be much about how the people around that loved one cope with, what I felt, was the utter madness is the first few months of treatment. There certainly wasn’t a blog that talked about the despair and hopelessness I felt. Those first few months were, quite simply, the worst few months of my life. I couldn’t find anyone talking about how terrible it was. Yes there were parents talking about the bravery of their child and their inspiring story, but it didn’t match our experience. There were lots of blogs that talked about the practicalities and the day to day logistics of childhood cancer, but not necessarily the impact on the family or the parents. I wanted to share, what I felt, was really going on.
I now know that we had a particularly rough start exacerbated by Rob becoming ill and the dog being hit by a car (I still haven’t shared this calamity, but I will). I remember the nurses, doctors and other parents telling me it would get better, that it would get easier. I couldn’t imagine how it could get better. Every time we went into hospital, things got worse; Eleri became more and more poorly and we were powerless to help. We just signed consent form after consent form and watched our baby being taken away by well meaning adults. We had no choice. No control. It’s unnatural to let strangers take your child away and hurt them – even though you know it will make them better and that you don’t have any other option. That’s when the wandering began.
It’s a strange feeling wandering through your own life. I see new parents on the ward wandering, dazed by rounds one and two of a fight they haven’t trained for. I try and offer words of comfort. I always end up saying ‘it will get easier’, those immortal words that were uttered to me that seemed so unbelievable. But it’s true, it does get easier. You get used to the wandering. You get used to the fear. You get used to life being thrown into the air and not knowing where the pieces will land or if any will shatter. It’s awful and no one wants cancer to enter their lives, but it really does get easier to deal with. Things do get better. I mean it never feels easy, but you come to accept and cope with it all.
We no longer trudge through our days not knowing what we were to face. We have an idea of what our current purpose in life is. We are still wandering, but we understand which direction we are wandering in. What helps is the return of some normality. Eleri has been so well that she was able to go back to school. She is tolerating her chemotherapy better and recovering quicker, which means she feels able to do more. As soon as Eleri felt well, the only thing she wanted to do was go back to school. She wanted to see and play with her friends. She wanted to feel the joy of the playground and the wonder that is learning. She managed two full days before neutropenia kicked in and transfusions were needed. Being back for those two days has revitalised her. I, however, felt like I was dropping her off at school for the first time. Although she was returning to the same class with the same staff, I had that alien feeling of leaving your child with adults that you don’t really know and who are now charged with taking care of her – just like at the hospital.
I had planned on staying with her but she didn’t want me to, so I left and my anxiety peeked! With Rob back in work and Owen at nursery I found myself all on my own for the first time in months. Is wasn’t a wondrous window of time to myself, I found it unsettling. I didn’t like not being with her. I wandered even more. I managed to see a some friends and get a bit of packing done, but was continually distracted by thoughts of her having to fend for herself. Images in my head of her crying hysterically, asking for me and no one listening. Obviously these were all my insecurities and the reality was that she didn’t give me a second thought. As a mother, you always want your children to become independent and able to go forward in life without you, but it stings a bit when they do. No mother wants to feel dispensable. That said, I am able to rationalising things. I know it’s really important that she gets time with other people without me and I get used to other people taking care of her. When she recovers, and she will recover, I can’t always be there. My mother always said that you never stop worrying about your children, no matter how old they get. I didn’t believe her until I had my own children. You never switch off from the worry, you just learn to function with it in the background.
Our wander has taken us to a place where Eleri has gone back to school. As is becoming usual for our life, there was no clear plan, rational or goal. She just wanted to go, so off she went. Currently, this is how we roll. We will continue to wander from one milestone to the next trying to make it to some sort of absolution, whatever that may be.