health

"The day I wished my child had cancer."

Walking through the halls of the hospital on my way to visit my son, I walked past the child oncology units. It was a brightly coloured area with signs telling families about the “Ronald McDonald Family Room, a place where families can relax; take a quiet moment and a deep breath in a warm and comfortable environment that the medical world does not enter” and “The Starlight Express Room – a place where kids can just be kids and escape the loneliness, boredom and stress of hospitalised life”.

Here the children can choose to participate in whatever activity they like: watch the latest kid’s videos, play computer games, do arts and crafts, or watch a performance by Captain Starlight. These rooms are located in the heart of the hospital. But this wasn’t where I was going.

I went past these rooms and turned left.

Down a cold and draughty corridor where some attempt has been made to inject some distraction through the provision of a cartoonish mural telling a story of a young boy and his dog.

No matter how many times I walked this corridor I could not interpret the story of the mural and instead found it somewhat depressing with its monotone colours and cartoonish quality.

At the end of this corridor was an intercom which I was to use to announce my arrival. Sometimes staff were able to let me in quickly, other times I had to wait. Once through this area I then had to wait in the waiting area for a staff to speak to me.

Image via iStock.
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The staff were located in a glassed office area and there were locked doors separating me from my son.

Again, at the mercy of staffing availability, I was forced to wait and watch my son through the locked glass doors.

This was me visiting my son at the child and adolescent mental health unit.

I remember vividly the day I wished my son had the 'fortune' to be born with cancer as opposed to being born with 'schizoaffective disorder'.

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My son had been sectioned, an involuntary admission, due to a negative response during a major medication change. He had been admitted voluntarily to a private hospital to wean him off one medication to be able to start a different medication.

This had been his sixth voluntary admission in a year in an effort to treat his debilitating symptoms. Symptoms that were largely ignored or misdiagnosed due to his age.

He was 16. This was his second “sectioning’ since he was 14.

As I stood there waiting helplessly for a staff member to let me in to see him, I watched him pacing at the glass doors and my heart broke a little.

Remembering his expression of "why am I here?" can still bring me to tears nearly a year later. Eventually a nurse came to see me and obtained permission from his doctor for me to go in and see him, but he wasn’t allowed to leave the unit.

First I had to lock my bag away and make sure I had nothing in my pockets. I had brought his iPod for him to be able to listen to his music, his lifeline, but was not allowed to give it to him as it has a glass cover that may be broken and used as either a weapon or for self harm.

The nurse went through the clothes I had brought from home and removed any laces from his shoes and draw strings from his jumpers. A band t-shirt, one of his favourites, was not allowed as the slogan “We are the walking dead” was seen as being detrimental.

"I had brought his iPod for him to be able to listen to his music, his lifeline, but was not allowed to give it to him." Image via iStock.
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Once given the all clear the nurses unlocked the doors from their station and I was allowed in.

The nurse suggested that we sit in the outdoor recreational area as it was quieter. This area, in direct view of the nurses, had a picnic table, a basketball hoop and a flat basketball. Unfortunately it was surrounded by walls which didn’t allow the winter sunlight to break through which left it feeling cold and damp.

Unsurprisingly we opted to stay inside. There was a common area that had lounges and a TV but as it was “school hours” the TV wasn’t allowed to be turned on. There was no “family room” or “fun room” for these kids and their families.

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For safety reasons we weren’t allowed to be in his room despite the fact that it couldn’t be locked.  Yes he had a private room, but there was no TV and no extra seating even if we were allowed to remain in there.

Due to safety reasons the door to the bathroom ensuite couldn’t be locked. My son was forced to shower in his underwear as he felt that anyone could enter at any time. By his bed, written on the wall was “Fuck this place. I want to die”.

This is what he saw every night he went to bed.

My visit was short as there was nowhere we could sit comfortably and he wasn’t allowed to leave the unit. Walking back through the cold corridor, I struggled to not cry. Walking past the child oncology unit with its bright colours, smiling nurses and sense of “openness” the tears emerged and with it a burning anger.

It wasn’t fair that my son was locked away in the dungeons of the hospital, not allowed to have the items that he was comforted by.

A unit where there was nowhere comfortable for the families to visit their children and if the child was able to leave would be subjected to a pat down search upon their return.

It wasn’t fair that when my son was admitted he had to be escorted by two big security guards even though there was no risk he would harm others, only himself.

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"For safety reasons we weren’t allowed to be in his room despite the fact that it couldn’t be locked." Image via iStock.

Just like the children with cancer, my son did not do anything to cause himself to be sick, he was born with it.

Just like the children with cancer he faces the possibility of an early death, but unlike cancer his death will probably be by his own hand.

Just like the children with cancer, my son was unable to accurately tell his doctors all his symptoms. The voices had been there most of his life and he thought they were normal.

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Just like the children with cancer, my son is vulnerable to a relapse at any stage of his life and will require life-long treatment.

Just like children with cancer, his treatment and medication has caused further damage to his body; a side effect of his treatment.

But unlike the children with cancer, his hospital experience resembles a prison sentence and unless the public perception of mental health changes will continue to do so.

At that point in time I wished my son had cancer so that he too could have “a fun room” where he could escape the boredom, stress and loneliness of hospital life.

That we could have a family room where I could visit him in some comfort. Where he had murals of animals and balloons on his wall instead of "Fuck this place. I want to die".

A year later my son has responded well to the medication change and due to the efforts of his treating psychiatrist and my family, his stay in the public mental health system was short. After his discharge he was readmitted to the private mental health system for a further 5 weeks to continue treatment.

My son was lucky that due to the financial support of my family I am able to afford private health treatment, an option not available to everyone. Over the last two years the cost of hospitalisation and medication has exceeded $30,000. This does not include ongoing medical appointments, counselling and other treatments. This was all done using private treatments and practitioners and I honestly feel that if he wasn’t able to access this he would not be alive today.

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Today I no longer wish he had cancer. I never really wished that at all. Childhood illness due to cancer, mental health or any other cause is truly horrific.

However I do wish that the approach to child and adolescent mental health was the same as the approach to childhood cancer.

I wish that these children, because that is what they are children even though they might drink, smoke, swear, have multiple piercings, wear shirts with skulls on them, be covered in scars from where they cut themselves, were treated the same way and not like prisoners, juvenile delinquents or somebody to be scared of.

These children and young adults, just like the children and young adults in the oncology wards, are sick and hospital should be a place where they can go to get treatment and hopefully get better, not to be locked away out of sight from others no matter how scary they may look.

I wish that parents could get the right type of help from the public system, that they aren’t turned away or dismissed by public professionals in the mental health area. 

I wish that they public system was designed to prevent serious episodes not only to respond to crisis.

I wish that mental health services warranted the same response from the public as childhood diseases such as cancer does. I wish that McDonald's would hold a fund raising day to raise awareness and funds for treatment as they do for cancer. Perhaps instead of donating money from sales of Big Macs they could donate from sales of Happy Meals.

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I wish that my son and I had never had to go through this experience, that he never became ill at all.

However this is unrealistic as it has happened and he will continue to require treatment for the rest of his life as will one in five Australians aged 16-85 (according to the Black Dog Institute) who will experience a major mood disorder, psychosis or depression.

I wish that for these people and their families/carers going through what is a horrible experience did not have to feel like they are a criminal who needs to be locked away for their own safety.

I wish that future parents do not have to walk down cold and draughty corridors to visit their sick child behind locked doors.

I wish that no parent had to look longingly at the care and consideration that goes into the treatment and support of children with cancer and their families and think from the darkest part of their mind: "I wish my child had cancer".

Watch: A parents' guide to youth mental health.