Lois' Story

I was diagnosed at 17, just as it was time to knuckle down in year 12. From the start of the year I was feeling tired and had constant headaches, but it just go to a point where I was spending every spare moment I had in bed. All of a sudden my neck flared up and was tender, lumpy and inflamed; I had to wear a scarf because it was sticking out so much! My mum insisted that I go to the 24hr clinic and see a doctor straight away. I was given a whole lot of painkillers, a thyroid test and an ultrasound. The thyroid test was normal and the ultrasound was a bit iffy so my GP decided to refer me to a surgeon who could investigate further. As the lumpiness didn't go down, I had a biopsy done. Luckily for me there was much local anaesthetic and a rather cute and young doctor who was only happy to oblige when my mum asked him to hold my hand throughout the procedure. I do have to say though that it took two months of investigation to get to this point

I remember getting the results very vividly, well the entire day really. The surgeon accidentally rang my mobile while I was in class, thinking it was my mum's number, but refused to tell me anything. For some reason at this point I knew that it must be cancer, I don't know how, it had never been discussed as a possibility - but I did. My mum rang to tell me that she was coming to school to take me to the surgeon's clinic because he wanted to see me immediately to discuss the results. I noticed as soon as I walked into his office a box of tissues on his desk that hadn't been there for any of my previous appointments. He proceeded to inform me that I had papillary carcinoma of the thyroid. Cancer, I was right. He explained that in young people it had a 97% survival rate as it was easily treated and that if he had to have any kind of cancer he would choose papillary thyroid (because skin cancer is such a 'cop out' cancer). He took pains to convince me that I would still be able to finish year 12 and go on my long awaited gap year. He referred me to a colleague of his who was more familiar with the kind of surgery I would need.

This man was the definition of bastard. Here I was a 17 year old girl diagnosed only weeks ago with cancer and as he was explaining something I butted in to ask a question. His reply was 'DO NOT INTERRUPT ME WHILE I AM SPEAKING!' He also decided that he needed some more samples, just to make sure. So then and there in his grotty brown 70s office he lay me down and shoved a few needles in my neck - what had previously been a full blown medical procedure under surgical conditions. Luckily for me, my mother works around the health sphere so she asked around about navigating the system. I went back to my GP and got a referral to the Peter MacCallum Cancer Centre, the only one of its kind in the country. So I went from some old crusty bloke who had done the same kind of surgery a couple of times to a professor of head and neck surgery. I was so much more comfortable with it this way. The funny thing was though, that the list of possible risks of damage associated with the surgery that the Professor gave was completely different from that which the first sadist gave.

The surgery was scheduled a week before my year 12 formal. My friends got wind of this and threw me a surprise formal. I was queen of course and the food, company and music was way better than a real formal. I felt so loved!

I had a total thyroidectomy and bilateral neck dissection. The surgery was supposed to take 2 hours, but took 6. When he cut me open the Professor was presented with something he didn't see in the scans. The cancer had grown in a way that made it very hard to see in any image and was bigger and more complicated than was first thought. He did a great job and only two of the many possible risks affected me. Half of my vocal chords were paralysed because that nerve had to be cut in cutting out the cancer. So I had to learn to speak and swallow again. Also a nerve in my eye was affected resulting in one of my pupils being constricted and now I have one eye slightly smaller than the other. It's only noticeable when I tell someone or if I'm really tired. I was out of hospital after 5 days and the real healing started when I got home. I could sleep in my own bed and not be woken every three hours for blood tests. I was up and about so when the formal came around Mum and I decided that I could probably go. We scrambled to get an outfit together and I floored my friends. I still had many bandages and couldn't speak, but man was I glad to be there!

I think about a month after that I went in for my follow up treatment. Luckily for me thyroid cancer isn't treated with chemo. There's a special radioactive iodine which doesn't have the awful side-effects of other treatments. I just became radioactive girl for a weekend! On the 9th floor of Peter Mac in my lovely lime green hospital issue pyjamas I took a tiny capsule which came in lead casing so heavy it was on wheels. This capsule had a radioactive symbol stamped on it and was produced at Lucas Heights. I was in a lead lined room for a weekend to catch up on some of The West Wing and The Sopranos. I didn't feel anything out of the ordinary and just had to keep sucking on lemon drops to keep my saliva going, therefore stopping the radioactivity getting stuck in the glands.

I got back to school about a month before exams and crammed my little heart out. My best friend and I had a huge combined 18th birthday party, where I got a round the world ticket from my parents. After exams I worked and partied like a crazy woman. When results came out I was ecstatic. I managed to get a 94! It was a great result after such a crap year. I jumped on a plane (two days after getting a clear scan) and jetted off to Europe. When I was on a whirlwind tour I was given the even better news that with my well deserved special consideration I was offered (and deferred) a place in Arts/Law at ANU, the best uni in the country, ranked no. 15 in the world. So I found myself little jobs here and there in hostels and doing babysitting; made easier by the fact I speak French and Italian. I was working two jobs and 60 hours a week in Barcelona, living with my best friend in a house not unlike “The Spanish Apartment” when things went wrong.

I found some unfamiliar lumps in my neck and within a week of presenting at emergency I was on a plane home to Melbourne. It was hard in so many ways. I was physically not 100% then having to come home after I was enjoying myself so much and having to live at home again with all my independence stripped. We knew it was the cancer but it wasn't until I had more tests and scans that things became clearer. It's not very common for thyroid cancer to come back, but for me something quite rare happened. The cancer stopped responding to the radioactive iodine. The only viable option for treatment then, was surgery. So I had two, one for each side of my neck. I spent the rest of the summer chilling out at home and with friends and after getting the go ahead from my medical team left to start my degree in Canberra. I'm living on campus which is loads of fun. I'm enjoying the degree a lot more than I had anticipated and I don't find Canberra to be the hole everyone makes it out to be. I go home every 8 weeks for consultations and am ever observant of the state of my neck.