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Surprise - a brain tumour at 26!

From Caroline Matthews

How it began

My name is Caroline Matthews and I’m a 26 year old registered nurse. I work at one of the busy hospitals here in Brisbane in the radiology ward. My life completely changed in 2006 after an already big year. 2006 for me was supposed to be the best year of my life - I got married to the love of my life in February and we had just decided to try and start a family. I had just moved wards within the hospital to try something new and I wanted to try out the MRI machine to see what it felt like so that I could explain it to patients that asked.

One afternoon, on a public holiday, I jumped into the machine and tried having a MRI of my head (just to see what it was like). Well, one thing led to another and I was told that there was something 'not quite normal in my scan'. I was asked what felt like a hundred questions all the while wondering what the heck was going on. The doctor who was on duty was only in training and told me she would have to have it reviewed the next morning by her superior. So I went home for the longest night of my life.

The diagnosis

The next morning I was taken into the head radiographer’s room and spoken to by one of the doctors who I was good friends with. She began asking a lot of questions and then showed me a picture of my scan. At first I thought it was some practical joke they were trying to play on me; after all, I hadn't even had so much as a headache that Panadol couldn't fix! Within 4 hours my husband and mum were called into hospital and we had been referred onto a neurosurgeon who told us what to expect and had booked me in for surgery the next week. I was in so much shock, I just couldn't believe that I could be so healthy and fit and feeling fine, and then being told that I had a tumour the size of my fist in my brain. I went home and my sisters came over. It was an afternoon I will never forget.

The surgery

I had been preparing myself all week. I had filled out a will (which I couldn't believe that I had to do at 26 years old!), and packed my bags. The thing that scared me the most was that there was no guarantees that I would even survive the surgery, let alone know what I would wake up like. I was warned that I may not be able to move my left side or speak, I was told that I may have long term memory loss and not remember who I was or my family. They ended up postponing the surgery for a week to present my case to the brain tumour clinic for a second opinion and I was rescheduled for surgery the week later. That was the longest week of my life! I went in to hospital the day before surgery for all the usual tests and paperwork and presented to the hospital at 6am the next morning. I remember mum and my husband staying with me until I was wheeled down the corridor into the operating theatre.

Waking up was a blur, I could hear doctor around me asking me to move this, what’s my name, etc to find out how much, if any damage had occurred after surgery. Thank god there was no deficits. I spent the first 24 hours in the high dependency unit back in the neuro ward and was then moved to another room where I meet another lady waiting to have her surgery. While I was in hospital I was bombarded with doctors and specialists all wanting to ask me questions and tell me the next steps in my treatment. I was so scared and I don't think what had happened had really sunk in at that point. Much of that time was a blur - a painful blur. In total I spent 6 days in hospital before being let out.

Radiotherapy

Two weeks after surgery I was booked in to start radiotherapy. I had no idea what to expect. I was scared stiff. To make things worse my husband had left me cause he had trouble coping and so I had moved back to mums temporarily. At this point in time, due to my allergies from the pain relief, I could barely walk to the toilet or get myself a drink and spent most of my time in my own little world sitting on the couch. I had 6 weeks of radiotherapy for 5 days a week, it felt like a full time job even though it was only half an hour in the mornings. I wasn't so bad at the start of therapy. I was the youngest patient having treatment by about 30 years and, to tell the truth, I actually felt bad going into hospital some days because I felt reasonably well. But looking around the waiting room there were a lot of people far worse off than I was.

The treatment wasn't so bad, I had a mask made and everyday it was a matter of lying on a table underneath a laser machine, strapped onto the table and then lying still. I had virtually no side effects like some people describe. I mean, my hair did fall out (just the front where the radiation beams hit), and I did have days where I felt really tired, but I didn't get radiation sickness or sore red welts on my skin, or bad headaches. I did however get very depressed when my eyebrows started falling out 4 weeks after my treatment stopped, and I could barely get out of bed without feeling absolutely exhausted...but I’m hoping that goes away fairly soon. I’m back at work and have been for about 4 weeks. And even though its only 2 days a week for 4 hours a day that’s definitely enough for me at the moment.

Waiting

I think the hardest thing about what I’ve been through is knowing that there are other people out there just like me and worse. The whole process feels like one big waiting game where no one has any definite answers. I’m the only one in my family and extended family who has gone through anything like this and its hard when you research to find answers and everything you read is doom and gloom. I just wanted to be a tiny voice out there who can say...it’s not all bad and you're not alone. People are amazed everyday at how well I am looking and how much of a recovery I’ve made and how quickly I’ve done it! I know this is just a stepping stone in life and I know it is for you too! You just have to believe that there is a bigger plan out there. We need more success stories so that people can have something to focus on. Please share your successes with someone, it can mean a world of difference.

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Updated: 28 September 2009