The journey starts here

I am a 27 year old primary school teacher from Melbourne, Australia and was ‘officially’ diagnosed with Non-Hodgkin’s Lymphoma on the 30th of December 2009. Up until this time I have never really been sick. I don’t get colds or stomach bugs, I’ve never had the flu, haven’t been on antibiotics since I was about 12 and I’ve never been to hospital. I play sport and I eat well. So it's a huge shock to suddenly be so sick.

My lymphoma journey began a few months before my diagnosis when I’d been experiencing pain in my chest. At times it was incredibly painful and I couldn’t seem to get a deep breath. It felt like a hippo was sitting on my chest! I went to a physio which made it better for a few weeks. It then came back so I tried a chiropractor. He also seemed to fix it but it came back a few weeks later. I went back to the chiropractor and every time he pushed on my chest I would cough (a really deep, yucky cough). So he took my temperature. It was high, so he told me to go to the doctor. The doctor said perhaps I had a chest infection and put me on antibiotics. These seemed to be great and the pain was gone within a few days of taking them. A few weeks after that the pain came back again. One night not long after this (November 24th) I was watching TV and thought that my neck felt tight. I went to rub it and realised it was swollen. I had a big lump and all around it was so swollen you couldn’t see my collarbone. I assumed this was still a chest infection (even though I'd had no coughing) and went back to the GP. He sent me straight away for a chest x-ray which showed a swollen node in my chest. He started asking me if I'd had any other symptoms apart from the fevers. I had been having bad night sweats, but I thought it was just the heat wave we were having and was telling my fiancé we needed an air-conditioner in our bedroom! I had also been very tired but just put that down to being busy at work and the time of year (lead up to Christmas). 

The GP sent me for an ultrasound of the neck, a CT Scan and blood tests. This showed that the supraclavicular node (near collarbone) was 7cm long, I had a swollen node in my chest, and I also had a lump in my breast. The GP told me he thought I had lymphoma. His words landed on me with a huge thud and in an instant my world came crashing down. This couldn't be further from what I was expecting to hear.

How could I have cancer? I thought there must have been some kind of mistake, I don’t get sick so how could I all of a sudden be this sick? Especially when I looked well and apart from the chest pain and a bit of tiredness felt ok. I’d spent months thinking I had some awful muscle injury and all of a sudden I’m faced with this instead. 

I was given a referral to see an oncologist. The waiting was awful. I just wanted to know what was wrong so I could deal with it. Somewhere in my mind I was hoping that all the test results meant nothing and maybe I did just have some kind of infection. 

I went to see the oncologist on the 3rd December. He told me he thought I had Hodgkin’s Disease, but a biopsy was needed to make a proper diagnosis. He booked me in for another blood test and a needle biopsy of the neck lump and the breast lump the next day. The following day (Friday) the oncologist called me to say they were inconclusive and they needed a bigger sample. He said it looked like an aggressive non-hodgkins lymphoma but I would need surgery to remove the lymph node in my neck for a biopsy. He booked me in to see a surgeon on the Monday. I saw the surgeon on my 27th birthday and he was confident he could take out the node and I would be only in hospital for the day. But, being a public hospital patient I had to go on a waiting list. He said he would put it as urgent but it could take up to a month. More waiting. More not knowing. 

I received a letter from the hospital a few days later and was booked in for the surgery on the 23rd of December. I was happy it hadn’t taken a month, but having never had a general anaesthetic before I was worried about how I would cope and that I might be sick for Christmas. My Nanna, Mum and sister all get bad reactions to the anaesthetic, so I wasn’t too optimistic! Luckily the surgery went well, I wasn’t sick and was home by mid-afternoon and feeling fine. Once again more waiting though. I had no idea how long it would take to get the results and I assumed the Christmas and Boxing Day holidays would make it take longer. I just tried to put it out of my mind and enjoy the festivities. 

I went back to see my oncologist for the results on the 30th of December. I was diagnosed with Mediastinal Large B-cell Lymphoma. As it’s an aggressive cancer the oncologist said I would need to start chemo the next week. He booked me in for my first session of R-CHOP 21 on Friday the 8th of January. He said the first session would take 6 hours. This terrified me as I have an intense needle/blood phobia and couldn’t bear the thought of a drip in my vein for this long. 

So, I may be the person who doesn’t get sick, but I’m now definitely sick. Ahead of me is about 18 weeks of chemotherapy, followed by a month of radiation to the chest. I’m still feeling very “is this really happening to me?” and in some ways I think I’m a bit in denial. But, regardless of how I feel about it the journey has started.