Patient Stories

Surviving Lymphoma:Nell's Story of Resilience and Hope

In July 2013, when I was 25 years old, I woke up with a numb arm. I had slept on it awkwardly and cut off the circulation. When I had finished shaking it around to get the feeling back, I noticed a lump near my elbow.

 
Nell Hanbury
I record my dreams and look up the interpretations on a dream app, just for a laugh. Some of the dreams I have are pretty bizarre! I usually get a giggle out of it. In the weeks preceding this discovery, I had been having two recurring dreams: The first dream involved three teeth falling out and a new tooth growing underneath one of them. Dreaming about losing three teeth means you're going to develop a serious illness.
 
The second dream involved a family friend, who died from cancer when she was 26. She was trying to tell me something. I could tell from the look on her face that it was something serious. I don't know how, but I knew it was about me.
 
It was because of this that I knew exactly what that lump was and I was terrified.
 
I wrote in my diary when I found the lump and a week later, it was still there. When I finished my night shift (I'm a registered nurse), I rang up the local medical centre to make an appointment. When I saw the doctor the next day, I burst into tears because I was tired from night shifts and also worried about the sinister lump. She wasn't concerned, but organised an ultrasound the same day because I was so upset.
 
The ultrasound showed that my lymph nodes were all swollen on the right side. The left side was clear. The report said it could be anything from cat scratch disease (I haven't been scratched by a cat since I was about five), a virus or a blood dyscrasia, such as leukaemia.
 
I had a blood test the next day which showed high ESR (an inflammatory marker) and low lymphocytes (a type of white blood cell). I also tested negatively for a range of viruses. My doctor thought that I probably had some kind of virus and commented that "strange things happen to doctors and nurses". I didn't bother contradicting him. Health professionals generally don't believe in ‘hocus pocus’ or gut feelings.
 
Over the next couple of days, I thought about my recurring dreams. I knew I must have something bad. It was not a virus."
 
When my lymph nodes hadn't come down after a few days, he organised a fine needle biopsy. It hurt a lot when the local anaesthetic was injected. Once it took effect, it was fine. They also did an ultrasound, as I was told off for not bringing my ultrasound from the other day. Oops. The staff were very friendly and chatted away, which made the ordeal a lot more tolerable. The doctor exclaimed "Juicy Lucy!" while he was getting the sample. Gross. After the appointment, I rushed off to work as I was running late.
 
While I was waiting for the results over the next couple of days I thought about my recurring dreams. I knew I must have something bad. It was not a virus.
 
In early August, I was supposed to be working a morning shift, but was feeling too tired so I called in sick. While I was sitting in the waiting room at the medical centre, the practice nurse stopped by and chatted briefly with me. She said something about referring me to an oncologist. She obviously thought I had already seen the GP. When she realised her mistake she looked a bit awkward, then hightailed it to her office.
 
So I had cancer. I wondered how far it had spread and if it was going to kill me. There were a few things I still wanted to achieve: travel, finding my soulmate.
 
I spent the rest of the afternoon working out how to tell my family that I had cancer. My parents are farmers and live in a country town in the central west about five hours drive from Sydney, where I was living at the time.
 
I even Googled it. The Cancer Council website said to tell them when I felt ready. I wasn't sure that I would ever feel ready. I was feeling pretty calm about the whole thing, but I knew that my family would not be.
 
I rang home in the afternoon and talked to Mum. I told her the FNA biopsy showed malignant cells. Mum replied: "I don't understand". Dear God, I had to spell it out! "Mum, I have cancer". I lost my composure then. I pulled myself together and informed her of what the next steps were.
 
I had to call in sick again and needed an explanation ready. They don't like it when you call in sick two days in a row. The nursing supervisor asked me impatiently, "Well, what's wrong with you? Do you have gastro, a cold?" I wished it were that simple. I was silent for a moment while tears streamed down my face. "No, I have cancer," I said in a choked voice. She was very sympathetic, and told me about social workers and the counselling services available.
 
The following morning, I went with my aunt, who is a nurse, to an appointment with the surgical oncologist. He said that he thought I had lymphoma and referred me to a haematologist. I then went off for scans and blood tests. The incision biopsy showed that I had a non-Hodgkin lymphoma. I had a bone marrow biopsy done at the same time, which was clear. The scans showed that the tumour sites were in my neck, axilla (armpit) and epitroch (near my elbow) lymph nodes, all on the right side. Seventy per cent of lymphoma patients have metastasised tumours in their organs at diagnosis, so I was better off than most. The haematologist said that it was treatable and the prognosis was favourable – a huge relief to us all.
 
After deciding not to preserve my fertility, I started chemotherapy.
 
Everything was done very quickly. I was looked after by fantastic professionals. I don't know whether it was because I was a nurse at the same hospital or because I was young. However, I liked that I was cared for by people I sort of knew, rather than complete strangers. I had the CHOP regime (cyclophosphamide, doxorubicin, vincristine, prednisone) every three weeks for four months (August to December). I had a total of six cycles.
 
The first cycle was shocking. I didn't sleep a wink that night because the vomiting was out of control. Mum had to take me to emergency in the morning. Once I found the antiemetics that worked for me, I was fine (would only vomit about four times after chemo and always slept like a baby). This is also partly due to my aunt who would stay the night with us after I had chemo. Thanks to her excellent nursing skills we avoided any subsequent trips to emergency.
 
I also lost my hair. I didn't find this traumatic; [it was] more liberating. I would sing along with Delta Goodrem's ‘Born to Try’ while I combed my hair next to the bin. I eventually shaved it off. To my surprise, my head was the most perfect shape. No weird lumps, bumps or unsightly birthmarks. I carried the bald look off well!
 
I was pretty tired during treatment. I would meditate with a chakra meditation CD after lunch and would usually fall asleep before it was finished. It got you to repeat affirmations like, "I am a powerful soul" and "I love myself completely". It was a very good tool for stress management. I have continued with meditation to this day and now manage to stay awake from start to finish!
 
I have shared my story because I want people – particularly young people – to be vigilant about their health and not to take it for granted."
 
Mum and I would go for walks in the afternoons. We were living at my grandmother’s house on the northern beaches in Sydney. It was very restful and the scenery was beautiful. It was a great place to be for someone going through cancer.
 
A PET scan in January 2014 confirmed I was in remission. I now see the haematologist every three months for a routine check-up which involves a blood test and having my lymph nodes physically examined. I have had two check-ups so far and both were clear.
 
I am currently living at home with the family until I'm back on my feet (fatigue from chemo is preventing me from working full time). I'm enjoying having some quality time with them and living back in the country. Just the other day I bumped into an old primary school buddy who I hadn't seen for years!
 
I have started working a couple of shifts a week at the local hospital. It is a great contrast to my old job at Prince of Wales where it was very busy. I like the change of pace!
 
I have been accepted into a postgraduate course at The University of Sydney doing cancer and haematology nursing. It's delivered over a year via distance part time which is perfect for me. The course starts in March 2015 and I am very excited about the future!
 
This experience has made me a stronger person and a better nurse. I have shared my story because I want people – particularly young people – to be vigilant about their health and not to take it for granted. Cancer doesn't discriminate. If you think something is wrong, then it probably is. Don't put off seeing a doctor!
 
Addendum
 
In February 2016, Nell marked two years in remission. In March 2016, she received her postgraduate certificate in cancer and haematology nursing from The University of Sydney. She said, "It felt a bit surreal to think back to where I was when it first came to me that this is what I wanted to do with my life. I was a completely hairless, sick and very tired cancer patient. Now I'm bursting with health and well on my way to achieving my dream of working as a cancer nurse."
 
Nell is also passionate about sharing her experiences to help newly diagnosed patients and participates in a number of patient support programs.
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