Kylie P's Story

It all started with the headache from hell. I woke up Tuesday morning but couldn't get my head off the pillow. I took Panadol and after finally getting to sleep, I woke up Wednesday feeling just as bad and very nauseous but somehow I slept through Thursday. Friday I woke feeling a lot better but still had a slight headache. I knew I couldn't look after myself so I decided to drive home to Wangaratta so my Nan could look after me and help me get better. I was fine driving out of Melbourne but when I got out of Melbourne I had to stop at every truck stop to rest, it took me two hours just to reach Seymour so I called my grandparents who picked me up and drove me home to Wangaratta.

All I did was sleep or lay on the couch in the dark without noise I was still nauseous and couldn't keep solids or liquids down so I went to see a doctor and he gave me an injection of anti-nausea medication. By Sunday night I still had the headache, nausea, had developed photophobia (sensitivity to light) and felt very fatigued and weak. I went to the hospital and was sent home with painkillers and anti-nausea medication, I was diagnosed with severe migraines.

It got worse, a couple of days later I still had all my symptoms but now I couldn't move my head, all I could do was look straight ahead. While I slept I was having nightmares that were so bad that I'd wake up crying. A few days later my right eye wouldn't look to the right so I went back to the hospital and spent a few days there having various tests and eventually was sent home. I was diagnosed with a viral infection caused by a cold sore that I previously had. During the time I spent in the Wangaratta hospital I had various tests including a lumbar puncture, which is a test where they insert a needle into your lower back to withdraw fluid from the spinal cord. My lumbar puncture was a failure as they could not get any fluid from my spine, they called it a ‘dry tap'. I found out later that I have a pre-existing condition in which my brain is pushed against my skull, which is what caused the ‘dry tap'. The doctor then told me that having a lumbar puncture with this condition could change the pressure between the top and bottom of the spinal cord and cause aneurisms or haemorrhaging in the brain so I was lucky this did not happen.

After a few days of walking around with my right side weak and my foot dragging I went to my local GP who said I had a viral infection and foot drop, but to be safe wanted to send me to a neurologist. I went to Albury to see him and after he did tests he told me I had a lot of nerve damage in my right leg and looked like I had a stroke. I went to the Albury hospital for more tests but a day later I was told I needed to go to St Vincent's Hospital in Melbourne for an intracranial pressure operation.

I remember the four-hour drive from Albury to Melbourne as the longest four hours ever. I was hot and sweaty and very much in pain. I don't remember a lot other than when I got to the hospital all I could see was the really bright lights on the ceiling, which were hurting my eyes. I stayed in emergency that night and went off for my operation the next day. After the operation I was taken to the neurology ward where I discovered that the pressure released in my brain and the fluid around my brain, as well as in my spinal cord was so infected and the diagnosis was viral meningitis - finally the diagnosis was backed up. The infection was so bad my body couldn't drain fluid off my brain, and a machine had to do it for me.

As well as the fluid drainage I had the pressure in my head monitored because it was at 58 when is should have been between one and 10 (the normal pressure in your brain should be between one and 10; closer to 10 if you have a headache). The night after the operation I had a lot of bleeding problems, to the point that it wasn't going to stop. A doctor came to see me and ordered blood tests. The next day I was told my blood tests showed abnormalities and they wanted to do a bone marrow test, the first of many, but one I will never forget. As the severity of my diagnosis was unconfirmed I couldn't have a lot of drugs so I remember a lot of what happened during the procedure.

On 6 April 2007 (Good Friday), I remember my family being at my bedside when the specialist came by that night to give me the results. Everyone was silent as the doctor told me that I had Acute Lymphoblastic Leukaemia. As soon as the word leukaemia was said both Mum and Dad gripped onto my hands so tight that it was as if they would never let go. I looked at them, my mum, my stepdad, Nan and Pa, all crying and for the first time ever I saw my dad crying.

All I remember is the word leukaemia and then I thought cancer. Then I started thinking I'm only 20, I have cancer, I'm going to die! I looked at my family and all I could do was cry seeing the looks on their faces, imagining what was going through their minds. Everyone was crying, asking questions and all I could think was, oh my god, I'm going to die. I don't think my Pa will ever forget that birthday. Now that they knew what was really wrong with me, proper treatment could begin. The doctors told me about my type of leukaemia and how they planned to treat it and what would happen during and after the diagnosis.

Being 20 was a big advantage as I was young and healthy and had a higher chance of getting through the treatment. I remember the doctors telling me that chemo can make you infertile, I was in shock, I wasn't thinking about having children but now I had to. I thought to myself ‘I want to make the choice if I want children or not, cancer isn't going to take that away from me', so my option was to freeze some eggs for later on. I ended up not being able to see the fertility doctor as treatment needed to start as soon as possible, but I had Zoladex implants every four weeks to protect my ovaries.

I later found out that the leukaemia was heavily present in my central nervous system and that had caused the meningitis. After starting antibiotics my vision came back and the meningitis went away. I was young so I was given a paediatric protocol so that my body could more efficiently take higher dose of chemotherapy. I started chemotherapy orally, intravenously, muscularly and also intrathecally (via an injection directly into my brain through a reservoir in my head). I had an operation to insert a Central Venous Catheter (CVC) so I didn't need to have needles every day and I could receive blood transfusions and products. I spent five weeks in hospital and went home for a few days, then back for more treatment. This happened for about four weeks but when I went back for more treatment I was sick. I was admitted for further tests to find whether I had an infection. My CVC was removed but there was no trace of infection. They then did an MRI and found I had an infection in the reservoir. So the reservoir was removed and antibiotics treatment began but I wasn't getting better. Another MRI revealed an abscess where the reservoir was, a biopsy was done and I needed stronger antibiotics till the abscess cleared away.

During the time I spent out of hospital I tried to be as normal as I possibly could. In doing this I was careful as I didn't want to get any sicker than I was. Trying to be normal was hard but I went out with some friends and met a guy. We started talking over MSN and by phone but he had no idea I was sick. I had lost a lot of self esteem and didn't feel very good about myself as I'd cut my long hair short since it was falling out. I thought ‘this guy will run away so fast' so I didn't tell him. But then he asked to hang out and I couldn't as I was in hospital having treatment. He was shocked but didn't mind, he just wanted to make sure I was ok. So the next time I was discharged from hospital we met up and he treated me as if I was a normal person, without cancer. A few weeks later he was my boyfriend. Darren spent the first months of our relationship coming to visit me in hospital. It was very hard to keep the relationship going but somehow he didn't mind and understood. He always had a positive outlook even when I was on the phone in pain and crying or I'd had a bad day and took it out on him!

I spent the next four months in hospital on four different antibiotics, four times a day, as well as chemo. I was not allowed to go home, but as the amounts and durations between medications got less, I was allowed to leave and go out for lunch with my friends or go shopping. I had three more bone marrow tests - the first at 33 days after starting my protocol - to see if the treatment was working. I got my results back and I was in remission, so I started another protocol of treatment and after that finished, I had the second bone marrow test. Just like the first one, I remember a lot of it. Now that I had begun another protocol and medications were only twice a day, I was allowed to go home on a Saturday night as long as I was back Sunday morning. This was under the condition that my boyfriend picked me up, spent that time with me, brought me back, and I took medication - only then was I allowed to leave with him on a Sunday for the day. After a while I was allowed go home but continued my treatment as an outpatient. I had one more bone marrow test which was great, I didn't remember anything, not even how I got home or why my friend who took me home was at my house. I also started radiotherapy for 16 days at Peter MacCallum as part of my treatment.

During chemotherapy I had a lot of problems with my liver and kidneys. I was having large amounts of chemo drugs pumped into my system all at once, and my body didn't know how to cope and get rid of the drugs, so my liver or kidneys were deteriorating and causing further problems. Therefore chemo had to stop and I had to have other medication to fix my liver and kidneys, and let them rest so treatment could go back to normal.

I found it very hard being in hospital. I was the youngest on the ward and everyone else was older or dying. Knowing that your treatment was working and theirs wasn't was very difficult. I found it hard going through treatment let alone being the baby of the ward. I felt very lonely and like a prisoner. I wasn't allowed to go home. I felt that I was being punished for something I did wrong. I was lucky enough that my nanna bought me a laptop after I got sick to keep me entertained, and I ended up getting wireless internet hooked up. I found time passed by quicker, and it was easier now that I had a DVD player and the internet. I could still talk to my friends over MSN and email, and I had some kind of contact with the outside world.

Before my illness I was halfway through a Business Administration Traineeship and had to stop when I got sick. I now had no income and applied to Centrelink straight away for some kind of sickness payment as I was still paying rent. I was rejected and told I was well enough to work 15 hours a week. I applied again and was then told that I could receive payment as a jobseeker, which means that I had to attend job interviews and go to Centrelink to hand in forms even though I was having chemotherapy. Eventually my nurses saw the stress this was causing me and told the doctors, and they somehow got through to Centrelink and after two months of being rejected, I was given a disability sickness pension to which I was entitled!

My time at St Vincent's Hospital was long and the thought of being there for an unknown period of time was something I dreaded. I was 20 years old and I wanted to go to work and go out with my friends as they were all turning 21. A lot of the time I didn't want to talk to new people because I didn't want pity or people to feel sorry for me, but I also didn't want to talk to the other patients in the hospital because it made me more upset knowing they were worse off than me. I think people realised this and it was suggested that I look into a support program at Peter MacCallum called OnTrac@PeterMac, so I went to there to talk about how I was coping and feeling once every few weeks.

I made my stay in hospital a little more exciting and positive, all the nurses were young so I made friends with them. We joked and played around and I made them my friends and still remain friends with most of them.

I shared a room for four months with three of the most amazing and inspirational ladies I will ever meet and I will never forget the short time we spent together. They were a lot older than me, had a diagnosis worse than mine but still remained positive. They used to tell me stories from when they were young, in love, getting married, having children or when they came to Australia from other countries. Sadly the three of them passed away but I will never forget them.

I may have lost my hair, had needles jabbed everywhere and never want bone marrow taken ever again. Getting leukaemia was the worst thing that happened to me but also the best, I found out who my true friends are, and I met some amazing people and especially my boyfriend!