Diagnosis

 Welcome to my first post! 

Really my cancer started back in November 2019 but I was only diagnosed on 2nd June 2020 (happy birthday little brother, you can imagine how well THAT went down!) Since then it has been a whole new world that I think I still haven't got my head around, if you ever do. 

In November I started having pain in the left side of my jaw. I thought it was wisdom teeth as I've had issues with them before & went to a dentist. She said my wisdom teeth were fine, I was just grinding my teeth with Anxiety. I bought a mouth guard and thought that was the end of it, relieved I wasn't going to have to have any dental work done - hah!

A little bump appeared on the left hand side of my tongue, which we assumed was from me grinding my teeth. The guard helped a little and I didn't think anything of it, other than starting to have Panadol more regularly. The bump stayed about the same size but got more painful near Christmas. I started eating on the right hand side of my mouth and generally ignored it, assuming it was a canker sore from stress, thanks to my work at the time. Everything I read agreed with me & when I spoke to a Doctor, he agreed to. I started to use Bonjela and other mouth ulcer treatments with a little effect and read a Canker sore could take up to 6 weeks to heal, so I wasn't all that bothered. I was still eating - just on one side of my mouth - and I didn't really find the pain that bad. I was more interested in changing jobs and trying to get my Anxiety down, as well as an upcoming trip to the UK that I wouldn't have stopped for hell or high water, little did I know I was about to take a walk through Hell!

I went to the UK where the lump rapidly grew down one side of my tongue. I bought so many ulcer products, some worked and some were worse than useless. I showed pharmacists who agreed it was an ulcer and told me to check in with a doctor when I got back to Australia. I was still eating fine on the right side of my mouth. My Nonna gave me all the old school toothache treatments and whatever else they did, they took away the pain! I gave my tongue a poke and decided it could wait til we got back home. 

By this stage it didn't hurt to touch and everything else was fine so I just assumed it was a long term Canker sore from stress at work, not thinking anything else of it. Add to this the fact I'd seen a GP and a specialist prior to coming to the UK and both had assured me "it's very unlikely to be anything sinister." Note to self - don't ever buy a lottery ticket from them! I thought I was just being a hypochondriac. 

Coming back home my Dad took me to his local GP who had no idea what it was but referred me to a specialist. The specialist said he had no idea and referred me to St Vincents Hospital and a specialist ENT surgeon there. I thought this was getting a little out of hand but by now the pain was starting to become more serious. It was hurting to eat and slowly I was cutting more and more food out of my diet to relieve pain. He placed me on Oxycodone and antibiotics while we waited for an appt, me now thinking it was some kind of bacterial infection. Oxycodone did nothing much and I continued to not eat at work or cut food out of my diet. I started to lose weight rapidly but because I was overweight to begin with I didn't really see a problem with this, I just assumed finally my diet was playing ball with me. 

The ENT called to make an appt and I put my job first, rescheduling the appt a week later. This was a bad move you should never do, don't ever put work in front of your health. When we eventually did go I met Professor Gallagher, who took one look inside my mouth and told me it was cancer before he even did a biopsy. I said I expected him to say it was a bad canker sore but he hugged my shoulder and said no, I'm telling you that's cancer. I'll take a biopsy but I don't expect anything else. I burst into a weird kind of tears and stared out the window. He was 14 floors up and I wondered if I jumped would I die or just break my legs? This wasn't happening. I'm 33, I don't smoke or drink, I eat alright, I was fat sure but fat doesn't mean cancer. I hadn't done anything wrong and yet here's cancer knocking on my door. Cancer was an old persons disease, something that happened in tragic circumstances. I am not a tragic figure. This is not my battle. 

Professor Gallagher immediately took a biopsy there and then, numbing my tongue before putting a punch needle through it. I was in so much shock it didn't register despite my terror of needles. He then did some more tests and told us to go to the Kinghorn Centre down the road, where I'd meet with a team. I remember walking out crying and calling my brother, who was waiting at the hotel. He came down to meet us and we walked to the Kinghorn, where my mouth helped distract me by aching so badly I couldn't think of anything else. I could no longer swallow Panadeine Forte or Oxycontin so Professor Gallagher helpfully prescribed liquid morphine, which was a lifesaver before my operation. 

The meeting turned out to be an entire Oncology team including the Professor, a radiation oncologist, a speech pathologist, a dietician, a social worker, ENT surgeons and a student. All I remember was that the room was very dark, almost cozily dark and I wondered why they had it so dark. It was almost comforting until the Professor started to outline what lay ahead. It was definitely cancer, it was definitely stage 3, it was aggressive and he said "This is life threatening, you have to know that." It still didn't hit properly, this was just happening to someone else. Life threatening at 33 is not something I wanted to think about. 

He said I'd need to have surgery quickly, including removing almost all of my tongue and creating a new flap at the back of my mouth to replace what was cancerous. I'd need a neck dissection where lymph nodes would be removed as the cancer had already looked like it spread. My PET scan showed my tongue lit up like a Christmas tree of cancer. It looked pretty and I wondered how something that shone like that could be life threatening. I surely had 50 years to go before my own death came knocking on my door. I remember him saying I needed a tracheostomy and I said "Jesus" and promptly stopped listening. Nothing else went in. 

Outside I started crying and told my mum I didn't want to die before apologizing to my brother for ruining his birthday. The rest of the day is a blur until we came home, except for how wonderful morphine was at taking away the pain in my mouth. The words "I have cancer" kept rolling around in my head while I tried to sleep and I wondered what I'd done to cause it, if the month smoking in 2013 had somehow lain dormant or if there was some horrible thing in my past that had led to me getting this, like a karma bolt. I sounded a lot cockier and confident than I felt as I spoke to my family and friends about it, just a surgery, nothing big, it'll be fine. Then I learnt I'd next chemotherapy and radiotherapy to wipe up after surgery and that this was no 3 week surgery. This would be months of my life. I'd already gotten a new job I had to give up, Professor Gallagher shaking his head when I asked if I'd be able to take it up. He warned me not to expect anything for the next 3 months at least and told me I'd have a peg feed for a lot longer. I stopped listening then too, none of it seemed real. It seemed if I laid my head on my sofa and messed with my dog none of it would happen. The operation was ages away surely, plenty of time to get my head straight and start tackling things properly. 

The operation was less than a week and a half away at this point. Professor Gallagher saved my life without a doubt but at the time of diagnosis it didn't feel like that. It felt like he took charge of everything and I had nothing left to stand on. For me being a control freak, this was one of the scariest things of all. If he hadn't had moved quickly the diagnosis could have been worse or I might not even be here, but at the time nothing went in. Everything was just shock.