Before 2005 I was an independent, fit and good looking young man. I was rarely sick and had the whole world at my feet. Until one day in August 2005 when my whole world fell apart and I found out I had leukaemia.
This is my story – there is some good stuff and some bad stuff – but it is all pretty honest!
I was on antibiotics for about a fortnight from a standard cold/infection and felt well enough to go back to work (as a cook). That night I was really fatigued and when offered food I was not interested – not the Chris we all knew! I was sent home and I barely made it home alive after falling asleep a few times whilst driving.
“At home I was really weak”
I had stabbing pains in my stomach but I thought I would just sleep it off. The next morning I awoke to a feeling like having wind with sharp pains in my midsection and a low energy level. I spent the morning home alone in the bathroom throwing up, clutching my stomach and having diarrhoea at the same time. I rang my mum and she arranged for my step-dad to come home after lunch and take me to the doctors. I waited in a ball on the floor of my lounge room hoping that the pain and discomfort would go away while I tried to put my mind on other things.
Eventually my step-dad came home and drove me to the doctors.
Upon arrival the pain was so bad I was lying in agony rolling around at the front desk (which was totally out of character for me). When I was asked to stand and then lie flat on the doctors bench it took all my strength and commitment to lay flat while the doctor ‘assessed’ me by pressing into my abdomen and diagnosing my symptoms as appendicitis.
I was taken to hospital with my head in a bucket vomiting my way to emergency. Upon arrival at the hospital I was in the waiting room sprawled out across the chairs in a lot of distress.
The pain was unbearable and eventually (it felt like forever), I was taken in a wheelchair to another room. Now I’m not entirely sure what happened next but as memory serves me I woke up in ICU much more swollen with drips hanging off me and my family in front of me.
“People were frantic and I was still unsure of what was happening.”
While I was in the ED, my family were told I had leukaemia, and had no ability to fight infection. I also had necrotising fasciitis and had to have an operation the next day. They needed to operate and reduce the swelling by making deep cuts in my legs and inner groin. I was told I had a 50% chance to survive the operation and to say goodbye to my family and friends now, because in ten minutes I was going in to theatre.
“Looking back, this stage was a blur”
but I faintly remember telling my 7 year old sister to ‘stay strong’ and that ‘Chrissy is not going anywhere’. Then I asked to call my best mate of over five years and thanked him for being my good friend and all the good times we had had, then spending only seconds with my mum, who was my primary source of strength and encouragement throughout my ordeal, before wheeling down white halls into bright lights.
My heart stopped beating twice on the operating table from a cardiac arrest and I also went into septic shock. I was then transferred to ICU and for 2 weeks was in an induced coma, on life support.
When I woke up, my body was black and I couldn’t move. I was on dialysis because my kidneys failed and was on lots of antibiotics. During this time I was being seen by the physiotherapists and occupational therapists who were making splints and casts for my limbs. The physiotherapists were providing active therapy for my legs – this hurt especially as I had fasciotomies which are ‘big cuts’, for pressure in my legs.
I found it really difficult when the psychologist or psychiatrist came in to speak to me – I didn’t want them there, I didn’t want to talk or listen to them, I got angry with them and said I didn’t want them there, but they just kept coming in – they wouldn’t listen.
“In ICU I was always given something to help the pain.”
I was given sleeping pills too, which was good, and there was always someone there to help me, and be there for me. I had my own room in ICU because I had an infection, I had the use of a telephone and my family had somewhere to stay. They also used a hoist to help me move around in the bed and into a chair.
In ICU I had a ‘special nurse’, some were really good because they would spend time in the room with me – talking, listening and assisting with comfort like a ‘washer on the forehead’, some just spent their time outside the door, assisting when asked.
Sometimes I had to speak up and ask for what I wanted.
I was transferred to a different ward after my time in ICU. When this happened I knew I was going to live. I got more intensive physiotherapy and continued to have dressings, transfusions, medicines and antibiotics.
My next ward was very different from ICU. In ICU the nurses could meet all my needs, and because I had my own nurse they did things quickly. Things were different and the nurses were slower because I didn’t have my own nurse.
“I used my family to help lots of times.”
When I was on this ward I was standing up with the physiotherapist and it gave me hope of not losing my legs, but they were black. Soon after this, a Doctor came and told me that I was going to lose both my legs. One of the vascular surgeons said “its alright, you will be walking again in 3 years.” I thought “bull**, it’s going to be 3 years” – I ended up walking much sooner that that.
I was then transferred to a different ward for my surgery for the amputation of my legs… The nurses were unsure of my reaction and not sure how to deal with me, being so young, but they all got to know me very well.
“I spent 3 months is this ward and made some good friends.”
The nurses were pretty good and explained and understood what I was going through. After the surgery I didn’t want to look at my legs and the nurses were very obliging.
Whilst I was there lots of things were happening. I had the vascular surgeon, oncologist, haematologist, physiotherapist and occupational therapist, plastics, dietician, psychologist and pain team all involved in my care. It all needed ‘co-ordination’ so I spoke to the Sister in Charge and a meeting was arranged and everyone came and my care was more co-ordinated.
I returned to surgery once a week for skin grafts and dressings / procedures. My pain was managed well on request. My privacy was respected and provided. I spoke to the Head Nurse about my lifestyle needs. I never got up at 7am at home when I had nowhere to go and this is what was happening every day. I would then spend the day getting bored and depressed. I learned to become ‘assertive and selfish’ while I was in hospital. We talked, and worked out a program of daily activities that suited all of us and I no longer got woken at 7am.
I didn’t like the hospital food – the look and smell of it made me feel sick. I was also used to eating with the family at night and I felt ‘left out’ being in hospital, so Mum would bring in a meal and the family would eat with me at night.
“Mum always did things for me when I needed her. “
3 weeks after having my legs amputated, I was in surgery again and had my left hand and some fingers on my right hand amputated.
Being in hospital meant little things made a difference. Having a TV or a fridge in my room would have been good. Mum ended up bringing in my laptop so I could use it. The staff were good as they let me do things that were normal and made me feel like a normal person – I could stay up at night and sleep through the day – I had posters and pictures stuck up on my wall, and was allowed to have visitors whenever – just like home.
On the ward my family had organised a surprise visit by the Canberra Raiders. The CNC had to coax me out of bed early and had to make up excuses for me to be up and ready for their visit. It turned out to be a great day. They lifted my spirits, and everyone else’s too. It was a good day.
“Eventually I was given an electric wheelchair”
and it was good to get around the hospital. I started going on leave – day leave, then overnight leave. It was good getting home. I could see light at the end and it felt ‘normal’. At home I had friends visiting, TV and Foxtel – it was really good to do that.
Then the time came when I could be discharged from hospital.
I went home with a line in which ended up getting infected, and I had to be re-admitted to hospital. I was cold and shivering, and I started to turn blue. I was lucky to be in hospital when it happened. I didn’t really know the situation, I didn’t know what was happening and Mum was sent out of the room when a code was called and medical staff rushed in to prevent me from dying. I worried about who was dealing with Mum and what was happening to me.
Then I was in ICU again and had a lot of lines in and antibiotics going. Later I was discharged home again, attending chemotherapy at the hospital during the day. The nurses explained things well, things I needed to hear, “no bulls**”, I had a bed to lie on, magazines to read – nothing wrong ever happened there. The staff were all good – they all knew what they were doing. I was then admitted as a day patient to have physiotherapy.
“I was learning to walk and I was getting better.”
The staff were friendly and I had 1 on 1 time with the therapist; it was a better atmosphere. Mondays there would be a BBQ – the little things helped. I was not sick whilst I was there. Mum would drop me off and pick me up 1 – 2 hours later. It was the first time I had come into contact with other amputees; it was good to see what can be done, seeing people ‘doing it’.
Whilst attending physio, I was still having chemo checks, biopsies 6 monthly, regular blood tests, regular medications and outpatient oncology reviews, but I was in remission, and I still am.
I went to the UK a couple of years ago as an Australian representative for CanTeen and saw the Teenage Cancer Trust (TCT) units. What they offered for teenage patients was fantastic and I think these things would be great for young people who are in hospital like I was.
“After my ordeal I was ready to take on the world”
and become a normal and social young person again. Mum signed me up for CanTeen and I never looked back. After a few programs and camps I enjoyed being around such inspirational people that I took on leadership roles and eventually rose through the ranks to become national vice president and a board member.
Also being a healthy fit young bloke at heart, sports had always been in my life. I was classed as a ‘sporto’ at school and I wanted to redeem myself as active and fit again.
I stuck with rehab for a few years then pushed myself into some harder training. Now I train at the AIS 3 days a week swimming and also play wheelchair rugby in the national league and have attended a few Australian training camps as a development player.
I have never let my health or disabilities define me, this has been tough mentally to achieve but the second I give in is the moment I lose control of my own life and who I am.