Cancer is the biggest 'thing' that has altered my life. I first noticed myself feeling vaguely ill and tired on a holiday at Bribie Island after I finished high school at the end of 2006. Initially I didn't think much of it, figuring I was just overwhelmed from school coming to an end. Several months passed and I could feel myself getting sicker and weaker. I'd had constant nausea, vomiting, weight loss of approximately 12kg, very poor appetite, and found I couldn't stay standing for more than a few seconds. I felt completely weak, needing to sleep a lot throughout the day and feeling just plain sick overall. I gradually found myself too weak to do barely anything. At that stage, I didn't know what was wrong and wasn't enjoying life at all. It was dreadful. Every time I'd eat, even a small bite of food, it wouldn't stay down, none of it made sense to me. I had quickly gone from seemingly completely healthy and full of energy to very sick and exhausted. It became extremely depressing. It was also hard for people around me to understand, some thought I must have had an eating disorder, but I knew it wasn't that. I hadn't dieted or cut back on food deliberately, it was something physical stopping me from functioning normally. I couldn't make others understand because I didn't know what was wrong with me at the time; it was impossible to explain what was happening to me to anyone.

In the meantime, I'd done orientation at uni and found that completely draining. Every few metres I'd walk I had to sit down. One of my brothers who went with me was very worried. Nonetheless, I kept going and started uni in late February 2007 - going and getting there was so difficult, close to impossible. I'd been working casually at Target since high school and that also became a problem, even if I only had to work a 3 hour shift. It may sound strange, but I'd dread it, because what started as general fatigue quickly turned into rushes to the bathroom to be sick, and I became too weak to do the job properly. I got to the point where I couldn't complete the simplest of tasks I used to be able to so easily. Taking a bag into uni with heavy textbooks exhausted me. Walking up the overpass of the train stations felt like the biggest challenge. Looking back, I don't know how I lasted through even 3 weeks of that. I was very underweight and weak. I'd wake up with these symptoms daily, no matter which way I turned the feeling wouldn't pass. When I'd wake up in the middle of the night with excruciating abdominal pain and couldn't breathe I had the honest fear I would die. I pushed myself through lectures and trying to get to my classes on time. But enough was enough. I'd put it off for long enough thinking it was 'just one of those things' and it would eventually pass. Clearly it wasn't going to do that on its own. By the time I first saw a GP about my symptoms, I was only a mere shadow of my former self.

The GP first diagnosed me with severe depression and put me on anti-depressants. But because of the huge weight loss, she sent me for some blood tests - to check my kidneys, liver, thyroid function and iron. I knew something would be abnormal, but I never could have been prepared for what I was to be told. I only took half an anti-depressant the day after that appointment, and even though I was already feeling nauseous it made me feel even more sick. I knew within myself that depression was not what had made me so ill - so I didn't take any more pills. She called me in that Friday saying she needed to discuss the test results with me. When we walked in she had a look on her face that something was seriously wrong. She said the problem was with my liver, it was inflamed. The liver function tests came back elevated. That was the biggest shock in all of this - I was only 17 and being told that something was wrong with my liver, it didn't make sense. She listed some of the things that it could be, but a tumour was never mentioned or expected. I was very grateful with how promptly she took action. She ordered further tests specifically relating to my liver but also put me in for an ultrasound of the abdomen. I had blood tests the following day to test for any infections of the liver. I didn't hear back about those tests so I knew the problem wasn't an infection - although I didn't have any idea what else it could be.

On Wednesday 21 March 2007, I had an ultrasound of my abdomen. As I wasn't familiar with the process, after the ultrasound was over, I wasn't concerned when the sonographer left the room telling me she'd bring the radiologist in. I assumed that it must have been routine. The radiologist came in and said something quietly that I didn't quite catch. Before I knew it, she was telling me I needed a CT scan of the abdomen immediately and she was calling my GP to get approval. I had a nice lady in the room with me before and during some parts during the CT. I have never forgotten what she said to me "Just remember there's always someone worse off than you" - those very words have kept me going. It felt like a long time lying down still in that room, very drawn out. I wanted nothing more than to get out of there and see my mum who was waiting outside. The look on her face said it all. We were to wait for the scans to take them to my GP that afternoon. After the scan Mum told me that the radiologist said that I had a very large lesion on the left side of my liver. I didn't realise that by 'lesion' she meant 'tumour'. I wasn't very clued up with medical terminology! Obviously we were both very worried. I called my oldest brother to tell him what was going on, it confused him also because at that point we didn't know it was cancer. But it was good to have people to talk to about it. The radiologist told Mum that luckily I had a very good right lobe of my liver, that was a positive. I was to be urgently referred to a liver specialist. Once my scans were ready, we took them to my GP, who seemed just as shocked as us. She put the scans up on a screen and showed me this huge mass which had replaced the left side of my liver. I could also see how good my right side looked, certainly in comparison to my left lobe. It astounded me. It was horrifying to come to the realisation that this thing had been growing in my body and had not become a problem until recently and that it had a good blood supply. It made me sick. I tried to look at the brighter side of the situation - at least my right lobe was really good - that had to help. At which point my GP told me I needed to be prepared for what was coming up - whatever treatment the liver specialist would recommend. She wasn't sure what the treatment would be, she just said I needed to do what the doctors told me. I asked if it was all going to be okay but nothing was promised - there are never any guarantees in life.

She rang the hospital and spoke to someone who worked closely with the liver specialist, it was strange having all these things said about you and your health when you didn't completely understand it yourself. When she read out the measurements of the tumour, I was shocked. How long had this horrid thing been growing in me and what had caused it? Why on earth did this happen - and of all places - in my liver? There was just so much uncertainty. I was yet to realise that sometimes there is no known reason as to why some things happen to certain people; they just do. I'd been referred onto an excellent liver specialist and would be called within the next few days with an appointment. They called me first thing the next day with an appointment for the following Monday.

My 18th birthday celebration with family and relatives was coming up in just over a week so I was rather worried that I wouldn't get to go to it, as I didn't know what would happen next. I was more worried about getting to that than anything else as it had been planned for some time. The Monday morning it all hit me, I've never felt so nervous. I just wanted to get in and see the liver specialist and find out what was going on. I was sick all morning before heading off to the hospital but I eased up once I met him. He was honest and direct about what was going to happen - straight away he told me I'd need surgery, he rearranged his schedule for surgery on 3 April: the day before my 18th birthday. I'd be admitted into hospital on the afternoon of Monday, 2 April. So that meant I could still have my 18th party before I went into hospital. I was shocked but relieved that they'd be getting this thing out of me as soon as possible, because it was considered urgent. All I wanted was to have the tumour out of me so I could feel better again, I couldn't remember what it was like to actually feel healthy. The liver specialist told me I had a rare form of liver cancer called Fibrolamellar Hepatocellular Carcinoma - he'd seen only 2 other cases of this before mine and they were both in young women around my age. It usually occurs in younger people without underlying liver disease and are otherwise healthy. There is no known medical reason for this type of liver cancer, he said I was just very unlucky. I was informed I had calcification in and around my liver, indicating it had been there for a long time. He put one of the scans up to show me the tumour squashing my stomach - that explained why I'd been so sick for all those months. I kept searching for reasons as to why this happened to me but he assured me it wasn't my fault, that I didn't cause it somehow. The entire left lobe of my liver was going to be removed in the operation and I learnt that the liver can regenerate itself. In a way, I felt lucky that this had happened in my liver and not somewhere else, as my liver could grow back to its normal size in the months following surgery. He was the first person to tell me everything would be okay. I rang my oldest brother and told him what the liver specialist had said to me. It was a sad phonecall but in the end we found a way to lighten the mood. We always pay out on each other, it may sound strange to do that after such awful news but it was just what I needed to cope with the shock.

I decided that this was just another hiccup in life that I would have to deal with. I enjoyed my 18th party with relatives and although I couldn't eat much it was a great night, which I was thankful for being able to have. It was good to have something to keep my mind off the upcoming surgery. It was also good to assure people that despite the cancer, I was doing okay and I had great doctors who would take really good care of me. I got into contact with some friends from school and let them know what was going on.

I went into hospital on the Monday, talking to several different doctors both then and the next day before surgery. The staff were really nice, lying on a bed in the waiting room was the hardest part. I just wanted to go into surgery and get it all over with! It seemed like such a long time waiting for the doctors to actually move me closer to surgery, I had a lot of doctors come talk to me before then though, so it wasn't so bad. The last thing I remember was breathing into a mask.

I always thought the hardest part for me would be getting through the surgery okay. Surprisingly, I coped really well in the lead up to it. The surgery went well but recovery was so much harder than I could ever imagine - physio day one post-op was hard, but once I started getting out of bed and walking around the wards it gradually became easier. That and different nurses recognising me as I'd walk past and think - "I know their faces from somewhere, I just don't know when or where!!". I think the pain medications made my memory a little hazy. I was soon volunteering to do extra walking so my mum and brother would help me. I was lucky to have family around to help. I found the doctors and nurses to be very helpful and some could even relate a little to my situation. One thing about hospitals is you never feel alone! There are always doctors or nurses coming into your room to either talk to you or other patients. And I had family and friends visiting a lot, which made the time pass. I even got to eat cake on the night of my birthday when I was only meant to be having clear fluids! There was no better birthday present than to have an enormous tumour removed from my body and to finally be free of it!!

I was discharged from hospital the following Monday as I'd recovered well. I was told there were lymph nodes removed in the operation and they were found to have cancer in them. The tumour measured 15cm. The doctors told me I may need chemotherapy to kill any cancer cells that were possibly left in me. That was another surprise to me, I didn't realise that chemo was even a possibility, by then all I'd been told I'd need was surgery. The surgeons believed that they removed all the cancer and I had a clear resection margin. It didn't take my body long to recover, and soon my appetite and health came back and I felt so good. I felt like a new person.

From there, I updated family and friends on what had gone on. I had a lot of support which I was and still am grateful for. Some people weren't so supportive and backed off completely. I guess some people just don't know what to say so they say nothing and keep clear. While it can be hurtful, I've come to understand that certain people don't know how to react any other way. Some could be really patronising and because of the rarity of this cancer they just wouldn't understand and didn't seem to listen. I've lost count how many people have told me to just 'stay positive', 'you won't relapse', etc when they hadn't been through anything like it. I find that I cope well without the pressure of people who couldn't understand.

Before hearing back from the hospital again, I made the decision to defer uni, as treatment itself and the length of treatment were not clear. I also thought that chemo was on the cards for me. It would have been too much stress for me to continue studying and I wanted to study when I could completely concentrate on it. I'm happy to wait for the right time to commence study again - health comes first. I had my follow-up with the liver specialist in May. He told me I needed to be assessed by an oncologist to see if there is an effective, suitable form of chemo available for this type of liver cancer. He referred me on. I didn't hear back from the hospital until early July (it seems like such a long time while you're waiting) and my appointment was scheduled for 1 August. The appointment with the oncologist confirmed my fear of there not being an effective chemo out there that we could try. He told me there is no effective type of chemo because this cancer is so rare, he looked at worldwide cases where chemo had been used but it hadn't helped any FHC patients. I was told that this type of cancer was not normally treated with chemo because of the very low response rates, it is apparently not drug-responsive. He reinstated that this has no known cause and is therefore hard to treat and that there will never be a cure for FHC. Any chemo drugs used overseas for FHC were not approved for use in Australia and are very expensive. Apparently I had bile duct obstruction seen in the operation which posed another problem. I was told that as this is a 'surgical' disease, not a 'medical' one, surgery would be virtually my only option in the future should I relapse. I did enquire about a liver transplant, he said I could bring it up with the liver specialist should I need to in future, however due to a shortage of donors and the issue of the body rejecting the liver, it was not likely to be a feasible option. If the cancer were to come back outside the liver, a liver transplant wouldn't help anyway. I asked about getting a referral to a dietician but he didn't seem to think changing my diet would help. My GP later referred me onto one as I decided it was something I wanted to pursue anyway. The oncologist also talked to me about the calcification - which indicated to them that the tumour had been growing there for quite a long time. I assumed he meant several months but he told me it would have been there for several years. To hear those words, it almost felt like we weren't talking about me. I didn't get upset at the time, it just felt numb. He explained that at first these tumours grow slowly and then when they'd grow larger and larger, they'd start bumping into other organs, in effect causing pain. That is when you first notice that something is wrong.

In September (07) I had my first follow up scans since the operation, and unfortunately they found that I had relapsed in several places - one tumour in the right side of my liver, there were now two tumours in my right lung and it had also spread to several lymph nodes around the abdomen. That was the worst part in all of this, the time that my spirit and determination was tested more than ever. The cancer appeared to be aggressive having spread that much in the mere 5 months since my first operation. I was told how grim things were looking by several doctors, it made me realise just how swiftly things can change in a person's life. I discussed with my liver specialist about whether or not it was worth having another operation. We decided that because I was so young it probably was. But due to too much scar tissue in my abdomen from the operations that may be the last time I could have surgery there. I had my second liver operation in November 2007 which went very well. My liver specialist wanted to see if chemo would shrink the tumours in my lung, thankfully I was offered treatment at another hospital.

I started an experimental oral chemo at the beginning of 2008, it landed me in hospital after being on it for just over a week, with all sorts of horrible side effects including a really severe all over body rash, among other things. I looked like a bright red monster!! I was in hospital for longer recovering from the side effects than the duration of the treatment! Once I'd properly recovered I tried it at half dose, but after taking just one tablet, I went really red with another rash and all the same side effects as the first time. Another hospital stay - woop woo!!! It was clear that I was too allergic to it so I couldn't take it anymore. I was then told that there was a sister drug I could try, another oral chemo, I have been waiting for that since February and should know soon what will be happening next.

I knew from the beginning that relapse is very likely with FHC through what doctors had told me and my own research, but I didn't and don't think about it much now. I want to focus on what is happening in the present - if it happens again, I will deal with it then - I don't see much good in pondering about it all the time. I'm willing to try anything to beat this - anything's possible. Even though I may not have a great deal of options, I believe I can beat this. Every so often we hear of miracles - not just with cancer but many different serious illnesses. I am glad to still be here today, something that has been doubted a lot since I was diagnosed, and at this very moment I feel stronger and better than ever. I'm incredibly lucky to have so much love and support from my wonderful family and friends.

Through cancer, I have met some other people with FHC (not in person) from overseas and people with other types of cancer. Having them to talk to is a great support. I am yet to find anyone in Australia with FHC. It doesn't take long to realise you're not alone - there is a lot of support and understanding out there. While cancer is a traumatic experience, it has shown me a different kind of life with new friends and support, and a completely fresh outlook on everything. I feel very lucky to go through such an experience that makes me stronger and more aware of what can happen to anyone. Some people won't ever have that realisation. This has altered my life for the better. Of course I've lost some friends through this, I suppose it's not something everyone can handle. But at the same time I've found it quite surprising how well some people have dealt with it and some others simply cannot. That's life. It's times like these that you learn who your true friends are and how well those around you deal with the most difficult experiences in your life.

In the oncology units there seemed to be a lot of older patients, and very few people close to my age. I also found that in all my stays in hospitals there have been a lot of elderly patients surrounding me, rather than young adults like myself. It would have been nice to have had people around me experiencing a similar thing at a similar age. But I had enough family and friends supporting me that kept me amused! The doctors focus on the medical side of things in your stay so perhaps visits from people who can offer emotional and psychological support would be great for younger cancer patients.

Uni will always be an option in the future and is definitely something I would like to pursue once I'm at my full health. However, I do realise you can never plan too far ahead as you don't know what could happen in between now and then, you just have to take each day as it comes! For now, I am enjoying the extra time I have with my family and friends - new and old, and doing things I enjoy - going to the beach, movies, shopping, reading, watching DVDs, relaxing and going out for dinner! My health needs to be looked after first - before other responsibilities can resume in my life. Before cancer, study and work seemed to be my life. I'd feel guilty if I'd take a break and I would get so exhausted from overdoing it. They took all my time and energy so I had little room left to do the things that I enjoyed. While cancer is not a nice thing, it's made me aware of what is really important in life - what matters. Though times can be hard and I've had some of my worst moments since I was diagnosed, I've also had some of my best. I wouldn't trade in this experience for anything. It might have been an easier road to live a healthy care-free life, but I'd rather go through a life-changing experience that teaches me more than anything else could. I know it has shown me, my family and my friends a lot. I am always up for a laugh, life would be boring without humour! The little annoyances in life don't get to me as much anymore! I have come to know others with cancer and they inspire me to keep fighting. You can never imagine what it does to you and those around you until you experience it yourself or someone close to you is diagnosed. It's indescribable, but there's always a way through it.

I like to take each day as it comes, every day is a blessing and each day is another I'm proving anyone who says I cannot beat this wrong. I can beat cancer - if it spreads, I will deal with it in the best way I can. Dealing with the hard times has become second nature. I will do whatever it takes to stop cancer from taking me. There would be no better feeling.

Read other personal experiences from young people with cancer:

Natalie's Story
Andrew's Story
Kylie's Story
Nikki's Story
Bec's Story
Darren's Story
Lily's Story
Georgia's Story
Kylie's Story