Nikki's Story

The first 28 years of my life

I was born in Albury, NSW in 1973. I am the only girl in our family of 4 children. Having three brothers has helped me to grow into the active, determined and independent young person I am today. From age 12 onwards, my mum raised us 4 kids as a single parent and gave us children freedom, inspiration and direction to do what we chose in our lives, which I'm sure has led to our success and given us the strength to manage lifes ups and downs

I left my hometown of Albury at age 20 with my best friend, to explore the other side of Australia and then the world. I have backpacked through Europe and have been on surf safaris in Indonesia. I've enjoyed a lifestyle that many would envy, living in such beautiful places as Rottnest Island in WA and the hinterland of Byron Bay. While living on Rottnest Island, I worked in a surf shop and learnt to surf. Also there, I developed a deep passion for landscape photography. While living in Byron Bay for 3 years, I co-owned a digital surf photography business and was also working in a surf shop the day when I was diagnosed with leukaemia, which was Australia Day 2002.

Being diagnosed with leukaemia

I was at work this day when I noticed lots of small dots on my legs that I'd had for a few days were getting worse. Apart from these funny looking dots I was feeling completely normal. Thinking that I had some strange rash, I went to the doctor in my lunch break only to be told in a 10-minute consultation without a blood test that he thought I might have leukaemia! Within these ten minutes, this doctor had felt my stomach and asked if I had been feeling full? I replied‚ 'yes, when I was lying down on my surf board I'd had a funny bloated feeling in my stomach.' He then looked at my legs and also asked how long the pimples I had on my face not healed? I replied‚ 'couple of weeks.' After this brief examination and questioning, on my way out of his room he handed me a slip and asked if I could go and have a blood test taken at the local pathology. So with tears streaming down my face, I went to the reception and paid my $60 bill.

I walked slowly back to work to tell my boss in a state of shock and disbelief. He recommended I go to his doctor get a second opinion straight away. As I was walking to this next appointment, I was staring at the people in the street eating lunch and enjoying themselves. In my head all I could think was‚ 'why is this happening to me and not any of these people?' The second doctor examined the dots on my legs and then told me he thought it would be highly unlikely for me to have leukaemia, however he did organise a series of blood tests. I had these done and went back to work for the afternoon. I finished work around 6pm and went straight home and told my flat mate what a strange day I had. Nothing else was said of it and life went on normal again until the phone rang at 9pm that night. It was the second doctor saying, 'sorry but the first doctor was right in his diagnosis.' He proceeded to tell me I had leukaemia and asked if I had any family members living with me. I said‚ 'they live in Albury.'

At this point I went into shock and then started to feel weak. My flatmate came running to my side as she could hear the conversation and my cries for help. The doctor calmly asked if there was someone with me at my home and I replied‚ 'Yes.'. He then went on to tell me that I needed to pack my bags to go to the Lismore Base Hospital early the next day. My flatmate helped me contact my family in Albury and give them the shocking news. I rang my boss and told him I would not be coming to work for a while. One of my work colleagues said she would come and pick me up in the morning to drive me to the hospital.

I woke up in a bad state at 6am the next day after a feverish night's sleep. When I got up went to go the bathroom to brush my teeth, I noticed I that I had blood in my mouth. Trying to take in what was happening I went for a walk to the beach with my dog. As I was walking along, my hips began to feel disjointed and uncomfortable, but I persevered as I really wanted to see the ocean, so I could feel its soothing calmness.

By 10am that morning, the trip had been made to Lismore Hospital. I was directed to the plastering room (of all places!) and examine briefly by a doctor. This doc told me that it looked like I had an acute form of leukaemia and I would need further tests done at a bigger hospital. He walked out and I was left alone for over an hour. It was the Australia Day public holiday and there was not a lot of staff or people around. I was feeling alone and scared, so I took myself outside and sat down on a bench seat to get some fresh air. My friend was in her car driving to the Ballina airport to pick up my mother and youngest brother who flew in from Albury to be with me. It was around 12 noon when they had arrived and saw me sitting on the bench seat outside the hospital. After many tears my mum went in to see what was happening. She was given the run around and told that the doctor I was seeing was taking the rest of the day off and going home. Mum demanded to see him, so he came outside and told her that I would need to get myself to a major city hospital for treatment. Mum was handed a phone book and told to ring the hospitals in Brisbane or Sydney and then drive or book a flight and get myself there. He then said goodbye and left.

My mum rang Brisbane Hospital only to be told they did not have a place to take an interstate person, as I lived in NSW. We decided that Sydney was too far away from mums' home town of Albury and Melbourne would be better. So she rang the Royal Melbourne Hospital and we were welcomed immediately, with a report that a 17 year old male had been diagnosed with the same type of acute leukaemia as me three days ago. Mum set about and got some flights booked with Qantas. By now it was around 3pm and I was tired and aching all over. I was getting massive red bruises appearing all over my body. My mum went into the hospital and asked that a doctor come and see me. Another hour went by and no doctor came. The pain was getting extreme and so mum rang the RMH and spoke to a doctor there. The doctor was horrified at the suggestion that I fly on a commercial flight and said that my brain would hemorrhage flying at such high altitudes. He demanded I not get on that flight and said he would sort things out for us. Within 10 minutes a new doctor came out to see me and I was taken finally into the Lismore Hospital and admitted as a patient. I had to receive a blood transfusion straight away and platelets were also flown in from Sydney over night.

The following morning I underwent another blood transfusion before being airlifted by the Royal Flying Doctor Service to the Royal Melbourne Hospital. Within a couple of hours of arriving at the RMH, I was diagnosed with Pre B cell - acute lymphoblastic leukaemia. Over the next few days further tests were done, which determined the benchmark prognosis through identifying chromosomal translocations. These results showed that I was only 1 of 10 others in the world with this sub-type of leukaemia. Unfortunately as I also had an extremely high white cell count (more than 90% blasts cells) in my blood; my initial prognosis was very poor. The doctors said I would have a 5% chance of surviving this disease. I straightaway thought‚ 'five people out of one hundred do survive, and I will be one of them!' They put my onto a 54-week protocol of chemotherapy.

Life as a cancer patient

From my first day at RMH to the last, I remained positive. I am not sure why, I just seemed to have this automatic coping mechanism take control over me. There were times that I was extremely scared of losing a life that I once had, however I found the hardest part for me was seeing my family getting upset, because I was sick. I had to try and combat a huge fear of needles. I also attribute my inner strength to deal with my situation to my family support system. There was not a single day that I spent in hospital that my mum, along with my brothers, was not with me.

I was an active patient on ward, spending the days I was well enough visiting other patients and talking about our similar experiences. Some days I would get on the exercise bike out in the corridor and ride 20km. I would go up and down the flights of stairs in the hospital to try and pump up my veins so that my needle would go in the first time for the doctors. I would give my doctors such a hard time when they told me I would never be able to see my chocolate brown Kelpie - Jackie Brown again! Actually I gave my doctors a hard time, joking about lots of stuff, especially when they would give me my results and I would ask them silly questions like... "why can't you make the hair on my legs and under my arms fall out and leave the hair on my head instead"?

By December 2003 I became extremely ill from the side effects of the chemo. I contracted a rare fungus in my blood system and all treatment was stopped. They reported to my family that if I did not respond to the anti-fungal medication I would die within a week (I did not know this). At this time I was experiencing excruciating headaches from fungal meningitis and was placed on massive doses of morphine. On Christmas day my family with the help of the nursing staff, brought my dog - Jackie Brown in to see me with a set of reindeer antlers on her head. Early in 2003, I had a lumbar shunt inserted to relieve the swelling in my head, which unfortunately lead to nerve damage in my legs and an infection in my spinal column, which then also gave me bacterial meningitis. In May 2003, the shunt was removed and I was fortunate that my headaches disappeared and I was discharged for the final time as an inpatient at RMH. My family and I packed up our belongings in Melbourne and moved back to my old hometown of Albury.

Living a life after a cancer diagnosis

The time that I spent in the hospital was life-changing. I came from a family who had no history of illness. Before I became ill, I was very naive to the fact that so many people had to live a life with debilitating illness or injury. All of a sudden I was thrown into this world not knowing if I would ever have a normal life again. One of the hardest adjustments I had to make was actually learning to do nothing after leading such an active and young life. It was extremely hard for me to lie in a hospital bed and think of how my friends are just continuing with their lives on the outside.

Unfortunately I saw that some patients in hospital had no one to care for them, and they simply did not survive. I was lucky; I had someone from my family at my bedside every single day I was in hospital. I truly believe my family's support and love helped me to remain strong and gave me the will to live. Probably one of the hardest parts of living in hospital was meeting the patients who became my dear friends and did not survive. I now live life with a level of guilt of why did I survive and they did not? Another great difficulty was feeling alone because often I was surrounded by older patients who I just could not relate too. Many were way, way old, nearing the end of a long and productive life, and willing to die. Me on the other hand, I very much wanted to live my life and felt so ripped off and that it was unfair that I may not have the chance to do so. Even if I did, it appeared to me at the time that I was not going to be living the exciting life I once had. These are driving forces behind me wanting advocate and to do something with a relatively normal life I am fortunate to have after cancer.

Because my treatment was 1 and a half years in RMH and another 1 and a half years recovering from the treatment, I was absent from mainstream society for nearly 3 years. Slowly I learnt to take negatives situations in life and produce or turn them into positives. I came out of my illness with a new view to life. During my illness I questioned things like: we all work way too much - life is not about work; life is about family, relationships, love; we all need to slow down and enjoy what's around us as it doesn't last; life is limited so why not make the most of it. But my newfound views on life, I was soon to discover, were in opposition to the world outside. It was hard to fit back into the outside world, as society just seemed so fast-paced and on a different wave-length to me. Everything in those 3 years in the outside world just seemed to speed up. Real-estate prices went skyrocketing. 50km and 40km driving zones were introduced in this time. Men started dressing better than women, doing their hair and wearing pink! It was all a bit of a culture shock to begin.

I soon realised that as I physically recovered my emotions were catching up with me. I came crashing down in a heap, I became angry and I often lashed out at those I loved. I was worried that my emotional stability, or lack of it, was going to cause my cancer to come back. I knew I needed professional help to deal with these emotions, but I searched and searched and could not find anything. Yes there were support groups, but once again I got the feeling of being alone by going to them, as the majority of participants in those groups were either way too old or had breast cancer and I just felt left out.

Ever since my diagnosis, I have been on a constant and perpetual hunt for support services for someone of my age who has had cancer. I keep finding all these services out there for younger people (kids, teens) and older adults. I can see great cancer support organisations specifically for young adults up the age of 40 years operating overseas. I have been continually questioning myself as to why we can't have similar organisations here in Australia. I have now taken some actions in answering this question. And this is why I have provided my story for The Warwick Foundation, as this organisation, like me, is trying to do something positive for young adults. Thank you Sam.