Please don't ask me how I am

Newborn Rory 2002

Please don’t ask me how I am.  How would you be if one of your precious babies was diagnosed with cancer, again?  I know you ask because you care but how am I supposed to answer this question …... I am fine?  I haven’t been fine since Rory was diagnosed.  When you ask me this question you don’t want the long-winded explanation of how I really am.  It is too tragic, too raw and it makes you uncomfortable.  I know it is difficult to know what to say. 

Today’s blog is dedicated to how I really am, to how all the mothers of cancer kids are.  I am not alone.  I see the mothers on Ward 27B every day.  They have my utmost respect and my deepest sympathy.  If mothers of cancer kids are dressed and moving about in the world it means we are functioning.  We often cannot do more than this.  We function because our children can’t endure treatment without us, and without treatment cancer is a death sentence.  We love our children unconditionally so we do whatever it takes.  For mothers, who are usually the primary care givers, it is particularly tough.  Studies reveal mothers of cancer kids have PTSD, are on medication, have failed relationships and struggle to make ends meet. 

Rory’s diagnosis plays havoc with my mental health.  On bad days I feel like giving up.  It is overwhelming and I feel like I am at the edge of my sanity.  I have had to give up everything which makes me whole; my job, tramping in the wild, volunteering for conservation and all my social connections.  I sometimes feel like I no longer exist.  My life revolves around Rory.  I am required to give to one person more than I ever thought I would have to in my life.  Rory needs help with everything, mobilising, feeding, personal care.  Everything takes a long time.  It is like having a newborn only it is harder to manage because he is bigger in age, size and weight.  It is a struggle to push the wheelchair, to get him into the bath, to help him down the stairs.  I am tired from lack of sleep and the continuous demands. 

I have to be strong all the time.  I force down fear, despair and pain.  To be this strong you become numb to emotion.  You don’t let yourself feel anything else.  I must put my child through treatment he does not want to have and which I don’t want for him.  I keep things moving forward.  There is no alternative.  I have to be positive and provide comfort and encouragement when Rory is suffering.  There is no room for weakness. 

I am constantly on edge, looking for anything which could threatened Rory’s life which I need to respond to.  Time always matters.  This often makes me irritable and intolerant.  I know I am tougher on Colt than I should be when he is only being an inquisitive exuberant 9 year-old boy.  My mind whirls with medication, medical appointments and doing everything I can to ensure Rory survives.  His needs are now very complex.  I struggle to think about anything else.  Everything else is no longer important.  I can’t settle.  We live half our time at RM House and half our time at home.  When we are at home the days are on count down until we return.  I rush around trying to cram management of the household and what remains of our lives into a short space in time. 

Sean and I struggle to maintain a relationship.  We are like ships in the night.  Sean is trying to bring in an income and take a turn helping with Rory.  We are rarely in the same place.  Dads also suffer in their own way.  When we are together we are two people trying to exist in the same location.  It is difficult knowing there is no end to this journey.  Once treatment is complete I will remain in absolute fear cancer will return.  Rory will also be left with additional significant disabilities which affect his functioning and quality of life.  He, and I, will have to find a new normal and revisit what we had hoped for Rory’s future.  I am devastated for him.  Being a mum of a cancer kid is tough, but not as tough as it is being a cancer kid.  Every day I am proud of Rory, of his courage, of his tolerance and of the way he can still find joy in little things.  He is my inspiration.  For him I stay strong, focus on moving forward and appreciate being alive.  So next time you ask …. I am fine.

Rory enjoyed spending a couple of hours at Inglewood High School on Tuesday and Wednesday morning.  It is important to encourage him to continue to be part of the life he would have had, attending school as a Year 13.  He cannot manage any more than a couple of hours as he is quickly fatigued.  He still has little appetite and some nausea.  Yesterday afternoon we had a visit from the Occupational Therapist from the hospital.  We need to put rails in the toilets and bathrooms so Rory can access these areas safely and to support him to manage his personal care.  We also need rails for the steps outside and a ramp is likely to be required in future.  The Ministry of Health does not fund rails but can lend us some of the equipment we need.  Any modifications at home will be a step by step process.  We do not know what Rory’s physical condition will be in either the short or medium term.  We may have difficulty accessing funding for ramps as he is on active treatment i.e. there is no ‘guarantee’ of long-term need.  Today I took Rory to the Hospital for a blood test and to have the wound in his neck checked.  It is clean and healing very slowly.  It is quite deep and open as when Rory turns his neck it stretches the skin.  The wound was dressed by Nurse Jane.  Rory is not neutropenic yet but his blood counts are below normal range and trending downward.  Poppa Honnor (our semi-retired builder) called in this afternoon to measure up the house for the rails and step we need for Rory.  We are lucky we have him to assist us. 

Thank you to Auntie Mary for the biscuits.