I had only been in the public service for about 5-6 months when I began to feel very tired and rundown. I wasn't enjoying my job and did not feel supported in my workplace, so I just assumed that was the reason behind my fatigue. I also began to experience extreme pain in my right elbow. I’d had a lump on my elbow for about 6 years and was always told that it was probably bursitis (tennis elbow), a simple inflammation of the joint, so I never really gave it the attention I should have.
After about 2 months of feeling like this, I finally decided to go and have an MRI and have the lump drained. When I attended the clinic, one of the doctors said that he saw something underneath the lump, a cloudy mass. He didn't seem too concerned though, so I just went about my business - I realise now that I was in denial. Shortly after the MRI, I had a CT scan. Again, none of the doctors seemed too concerned, so I stayed in my comfortable bubble of denial.
About a week later, I was away for work and my GP phoned me. This was the point at which my denial began to crumble. I have been with the same GP for 13 years and she is very laidback - she never gets worried about anything. When I heard the tone in her voice over the phone, I knew something was very, very wrong. She told me that she would be referring me to a Dr Paul Stalley at Sydney's RPA Hospital and that I would need to undergo a needle biopsy.
A week later, I travelled to Sydney for the biopsy. When I came out of the anaesthetic, I talked to Dr Stalley and he said he had looked at some of the cells and they all seemed to be clear. He told me that he would have to send them for further tests though. I felt quite positive at this point, and I returned to work a couple of days later. The day I got back to work, I received no sympathy from my boss or my colleagues and was made to feel that my time away had inconvenienced the office. I was also advised that my boss was terminating my employment, as, according to her, I had not sufficiently passed my probation period.
Well, as this point I was a nervous wreck. I spent the rest of the day crying with my Mum and my partner. But still, in the back of my mind, I was feeling positive that the biopsy results were going to be clear. Little did I know, that the next day, 2 April 2008, was about to become the worst day of my life.
On 2 April, I spent the day with my Mum and just after lunch, I decided to give Dr Stalley a call, on the off chance that my results were back. His first words to me were, "It's not good news. It’s a sarcoma". I felt myself float out of my body at this stage - everything around me seemed very surreal. My Mum heard the tone in my voice and came to phone. I wrote the word "sarcoma" on a notepad and I watched the colour drain from her face. Dr Stalley wanted to speak to my Mum, as I think he knew I was no longer taking any information in. When I gave her the phone, the floodgates opened - I screamed and cried and became unsteady on my feet. I fumbled through my handbag and called me partner, Elliott, at work. "Are you sitting down?" I said, not knowing how else to prepare him for the news. "Yes,” he replied, hesitantly. I could hear the fear in his voice, so I just blurted out "its cancer, I need you here now!" He practically dropped the phone and was with me in 15 minutes. At this point, I curled into the foetal position on the couch and wailed.
The rest of that day is a blur. I remember Elliott holding me and telling me that we were going to go to Europe and get married and have beautiful children, just as we had planned. I remember telling him that I wasn't ready to die. My best friend, Sally, and her Mum came over that night and we had a family pow wow. I remember feeling extremely guilty for burdening them, as Sal's father had passed away in 2007 after a long battle with a brain tumour.
The next day, I went to Sydney with my Mum to have a CT scan and and PET scan at RPA. It was a horrible, scary experience and just being in the hospital unnerved me to no end. A week later (the longest week of my life), I got the all clear from the PET scan, meaning that the tumour hadn't metastasised in my torso/lungs, which is where this cancer usually advances to. I cannot even describe how grateful I felt after hearing that!
Three weeks later, on 23 April, I was at RPA again, this time for my surgery. I had been fairly calm until I got to the hospital at 6.00am that day, but as soon I as I realised that I was going to have to say goodbye to my Mum and Elliott, I just lost it in front of about 20 other patients, which was a bit embarrassing! I went under the anaesthetic at about 7.45am and was wheeled back to my ward about 5.00pm. I can't even imagine the stress that my family had to go through during those hours.
In a nutshell, my surgery involved cutting half of my elbow bone out of my right arm, taking a flap of skin from my right forearm to cover my elbow, taking nerve strands from my left leg to enable a nerve graft on my right arm and taking a skin graft from my left leg to repair the wound on my right forearm. I endured a lot of pain during my hospital stay (as I know you can all relate to) and I had to learn to walk again, as the nerve graft from my left leg left it partially paralysed. I also had to learn to use my right hand and arm again (and I was very right handed), something that I am still struggling with every day. I still have no feeling in about a third of my right hand, but I have been very stubborn about getting back to ‘normal’, so can now write and type and use utensils.
I didn't have to have radiation, as the surgeons were worried that it would compromise the nerve graft and possibly paralyse my right arm permanently. I was offered chemotherapy, even though the oncologist felt it was probably not necessary, but was warned that it could greatly affect my fertility, so I opted against it. I am so grateful that I didn't have to go through either of these treatments, and I really commend those of you who have struggled through that side of the cancer battle.
The thing that struck me the most about this whole experience was the emotional rollercoaster that you are taken on, from the minute you are diagnosed. I've been told that it's like the journey recovering alcoholics go on - there's anger and denial and grief and acceptance (I still don't believe that I have truly reached that point, but I'm close). I became very withdrawn after I got home from hospital, it felt like a form of agoraphobia. I was blessed with a huge network of friends and family who guided me through it.
However, at times, I felt so alone that I couldn't even stand it. I could be in a room full of well-wishers, but still I felt as though I was the only person in the world. And I guess that's what cancer does - it isolates you. Being in my 20s, there weren't any support groups for people my age, which made everything feel even more hopeless! I also let me anger defeat me at times, because I had people telling me that they understood what I had been through, and that I should try and be positive - argh!!! I'm sure you all know what that's like, and although people mean well, it's the worst possible thing they could say to you!
This is the main reason that I want to be involved with the Warwick Foundation, because it was the first service that I found that understood where I was coming from! My hope is to start a small support group in Canberra (in my own living room, if I have to!!) for people 18-30 years, so that we can all share some experiences and heal one another, emotionally and psychologically.
Read other personal experiences from young people with cancer:
Natalie's Story
Andrew's Story
Jenna's Story
Kylie's Story
Nikki's Story
Bec's Story
Darren's Story
Lily's Story
Kylie's Story
