We are nine months into our journey with acute lymphoblastic leukaemia. So far, our 3-year old son Ru, has done really well and we have thankfully had a relatively smooth path to date. Whilst the chemotherapy and steroids have some horrible physical side effects, it is the emotional impact of having leukaemia that has hit us all the hardest. For Ru, who was once a confident social boy, intense treatment regimes and the unpredictability of being held down repeatedly for procedures to be undertaken has resulted in him becoming understandably, insecure and anxious. He needs to be next to someone 24 hours a day.
During the early days of treatment I spent a lot of time wondering if I had missed Ru’s symptoms of illness. As well as being a mother to four other children, I am a midwife and work clinically and as a university lecturer. Had I made my life too busy or spent too much time building my career to notice how unwell my son was? My clinical health knowledge didn’t assist me at all in the early days. How was Ru still able to run virtually everywhere and attend nursery with only a third of the haemoglobin his body needed and virtually no platelets at all? Questions such as these set the seeds of doubt in myself regarding my capabilities as both mother and midwife. As such I made it my mission to ensure I would not miss anything of significance with Ru again.
So since diagnosis, Ru and I have virtually never been apart. To start with, both him and I found this comforting. However as the weeks went on and we spent the days avoiding public spaces to try to reduce chances of infection, being together non-stop has become increasingly challenging. Whilst I have tried to play with toy cars for days on end, I have found I am not as creative with play as I’d like to be and do not engage the way a three-year old desires. I have battled with craving to go to the bathroom by myself to get some space and then guilt when I acknowledge that I’ve been reading Facebook whilst simultaneously trying to play with Lightening McQueen. There are constant emotional dichotomies when I recognize that I am so very grateful Ru is still alive to be able to play with, yet at times, I am stifled and saddened at the loss of Ru’s normal childhood and my old life and identity beyond a cancer mother.
This awareness alongside a reduction in the intensity of treatment plans has seen Ru return to pre-school nursery on days when he is feeling well. We have seen him flourish since returning to play with children his own age and stimulated with creative play far beyond my capabilities. I have had to accept that I cannot make his treatment side effects better through just being next to his side everyday. That he would have had leukaemia whether I was a working mum or not, and that me being at home full-time will sadly, not be enough to prevent a future relapse. Whilst these sound like obvious statements, having a child with cancer can be so emotionally consuming that it makes you question every thought process you have. How will others view the fact that I have chosen to put my three-year old with cancer into a pre-school nursery? More importantly how much guilt will I feel if, in the future, Ru relapses and I have to face the fact that I choose not to spend every waking minute with him before he starts school this time next year.
These are questions I cannot answer. Whilst our pace of life has certainly slowed down and we have a greater awareness for each other, life and the simple everyday things, I am seeing that both Ru and I are now craving and ready for some of our old life. As such I am due to return to part-time work shortly.
I’m certainly nervous about some conversations I know will be held by kind enquiring colleagues, as cancer etiquette is incredibly challenging in itself. I am sadly still along-way off from thinking that all will be well in the future, or feeling completely at ease that I am choosing to be at work rather than with my son, even though I can clearly see both him and I need this. Simple questions such as “How are you / Ru?” are therefore not easy to answer honestly and have the potential to destabilize. For now, a general “today is ok” is likely to be a typical response. So whilst Ru’s needs and health will always come first, I am hopeful that a return to work will provide me with some welcome relief from non-stop thinking about cancer and will enable me to being less critical of every thought process and activity that I undertake with Ru regarding whether I have provided him with a good enough life if his life is suddenly cut short? I have to accept I cannot take on this responsibility myself and that Ru’s life is enriched with normal childhood activities and knowledge that he is surrounded with an army of love both in and beyond his home environment.