I was first diagnosed with Hodgkin Lymphoma on my 23rd birthday. I had noticed a lump on my neck that I was worried about and my GP recommended that I have an ultrasound. The ultrasound showed that the lump was actually an enlarged lymph node and I was referred to have a fine needle biopsy.
I had a call from my doctor a week later to tell me that the results had come back positive for Reed Sternberg cells which meant that I had Hodgkin Lymphoma. I was absolutely horrified and I remember leaving work and just lying on my bed at home for hours thinking 'what am I going to do?'
I was scheduled to have the lump entirely removed and undergo what seemed like hundreds of tests. A PET scan revealed that besides the lump in my neck, the cancer had spread to my chest and I had a tumour 9cm in diameter just above my heart. This seemed to account for symptoms that had previously gone misdiagnosed like my weight loss over the previous months and incredibly itchy skin that my GP attributed to an allergy to skin cream. All the same I was diagnosed at stage 2A, meaning that the lymphoma had not progressed beyond the diaphragm and was not in my bone marrow.
It really hit me that I had cancer when I was sitting in a waiting room before having a CT scan. An older woman sat opposite me and after a few moments of silence she said 'Is it cancer?' I nodded and she said, 'Me too.' It was a really sad moment and we both just sat there crying.
My haemotologist suggested that I have 4 rounds of ABVD chemotherapy starting two days before Christmas. I wasn't the best patient. I absolutely hated having treatment and nurses had to calm me down before I could be given the drugs. It was the dacarbazine that really got to me, giving me this intense depressed and nauseous feeling as I sat there as it dripped in over an hour. My Christmas was miserable and although I managed to eat some turkey, I was mostly bedridden with immense stomach cramps and nausea.
Treatment didn't really seem to get better as time went on and I started getting panic attacks. My doctor prescribed me sedatives but I rarely left the house and stopped working altogether during the four months that I was in chemo. My parents used to come and bring me soup and sit with me during the days but I became more and more isolated and resentful of being sick. My hair began to fall out shortly after my second treatment but it seemed to fall out slowly and not in great quantities. I decided to cut my hair short and made my mum cut it all off because I didn't want a hairdresser to comment on how patchy it was. It was in the final couple of treatments that I saw an ad for the 'be brave and shave' campaign by the Leukaemia Foundation and in March I shaved my head, raising $3, 500 for charity.
I finished my last chemo in April. I imagined that it would be such a relief to have finished but during the last injection of dacarbazine the needle got bumped and slid out of my vein and into the surrounding tissue which is what is known as extravastation. It was incredibly painful and I've never seem the chemotherapy nurses move so fast when they heard me scream. It was very sore and for weeks after I took painkillers and applied numbing cream to the area.
I thought that was the end of it but follow up scans showed that the tumour in my chest was still considerable and I was referred to a radiation oncologist for radiation therapy to remove the possibility that any cancer cells remained. After my last chemotherapy it was like a light went back on inside of me and I started going back to work and seeing a psycho-oncologist for my anxiety problems. All of a sudden the future seemed so much brighter and I started going out and enjoying myself again. It was such an amazing feeling to have energy and experience everything that I had been missing. The whole way through my treatment I had read encouraging stories from survivors who had made it through and couldn't be happier, but I found it hard to imagine being normal again.
Even though I had three weeks of radiation therapy to my chest and neck each weekday, I started back full time at work, wearing a beautiful wig that I'd spent $500 on. Not many people at work knew that I had been ill and most commented on what an amazing haircut I had, which was fairly amusing.
Radiation therapy was an absolute breeze after chemotherapy. The staff were lovely and it was a completely different atmosphere to what I was used to. I was fitted for one of those awful masks to keep my head in place during treatment but I made the nurses cut out the eyes and nose so I didn't feel as claustrophobic. They mentioned that I might get a sore throat but I didn't think I could ever describe how painful it was. It came on suddenly a week after I started treatment and left just as suddenly 9-10 days later but it was shockingly bad. Nothing seemed to help except strong painkillers and I couldn't manage any solid food, but as soon as it left I felt completely normal and the rest of radiation was uneventful. My skin went quite red but it wasn't itchy and its now completely faded.
I now feel completely normal again, in fact, I feel better than I can ever remember. For months before I was diagnosed I was tired, stressed and underweight that left me feeling really awful. Now I've put on weight and have more energy than ever. Although having lymphoma wasn't a pleasant experience, I suppose it's like any pain – you forget about it and in the end you remember the lessons that you've learned. I know now that I'm much stronger than I thought I was and I value my family, who stood by me, more than ever. I'm closer to my parents, my brothers and my partner and a lot of my friends. I received a lot of support from the Cancer Council and the Lymphoma Organisation for which I will be eternally grateful. There are some amazing people out there who are doing great things for people suffering with cancer and I really appreciate all the help and information that I received.
My advice to someone going through Lymphoma would be:
- Don't lose sight of the bigger picture. It may seem awful in the moment, but life goes on and things will get better
- Don't worry about losing your hair. I spent far too much time worrying about mine and now I realize that nobody really cares what you look like. It will grow back and in the meantime it's so much easier to deal with!
- No matter what happens next, you will have to deal with it. So stop expecting the worst.
- Don't be afraid to ask for help and support. There are people who will go above and beyond to help you.