Natalie's Story
Life as a young adult with cancer
Being diagnosed with cancer at just 23 came as a big shock to me since I thought I had years ahead of me to achieve my life goals.
I had surgery to remove a swollen lymph gland that I'd noticed months earlier and was not expecting to be told I had cancer. The day I had my stitches taken out, the surgeon removed the bandage and casually said the gland biopsy showed that I had Hodgkin's Lymphoma. His exact words were: "the same type that Delta Goodrem had". I was shocked. Not only was I not prepared for that news but the way in which my surgeon announced it also seemed a little insensitive. I suspect though that he blurted it out because he was himself uncomfortable with having to tell me, a young adult, that my life would never be the same again.
Before I was diagnosed with cancer, I worked as a website coordinator and was consumed by a major project that involved redesigning my company's website. I had really bitten off more than I could chew but was determined not to fail and wanted to see it through until the end. It was in the middle of this very stressful time in my life that I was diagnosed with Hodgkin's Lymphoma.
The biggest challenge I faced once diagnosed, besides of course dealing with the emotional and psychological side of that, was deciding what to do about my job. I felt solely responsible for the project and obligated to see it through but the diagnosis made me realise that I needed to prioritise my health above work. I initially took a month off work to assess how I would cope with chemotherapy and whether or not I could return to work in any capacity. It was during this time away from work that I realised that I couldn't afford to be under pressure from my job while fighting cancer. I needed to dedicate all my energy and resources towards getting healthy so I asked my boss for extended leave until my treatment was finished.
Being diagnosed at such a young age presented unique challenges aside from just interrupting the start of my career. It meant being forced to rely heavily on my parents just as I was gaining independence, having to deal with the physical effects of treatment and discuss potential fertility issues, and having to face my mortality prematurely.
I was told early on that the chemo could make me infertile. The realisation that I may not be able to have children of my own some day was one of the most difficult things to deal with. For someone like me who loves kids, it was devastating news. Being a mother has always been one of my primary goals in life. It never occurred to me how important this was until it was threatened to be taken from me. To reduce my risk of infertility, I was given monthly injections of an implant called Zoladex directly into my ovaries that basically put them into hibernation during chemo. My fertility specialist also told me that I need to have children younger than I expected.
I remember also being struck by how difficult it was to find fellow Hodgkin's disease patients in Australia that I could talk to. It is such a rare form of cancer and I found it hard to find other cancer patients who were my age, let alone those fighting Hodgkin's. The chemo ward seemed to always be full of elderly patients who I found it difficult to relate to, and at the one cancer-related workshop I went to there were mostly older women with breast cancer. I turned to the internet to find support but still had trouble tracking down anyone in Australia like myself. Then almost as if by a miracle I received an email from a fellow Hodgkin's patient living in Australia who had stumbled upon my email address and contacted me. She had also been diagnosed in March and was desperately searching for a friend she could relate to. We became instant friends and communicated via email during our months of treatment.
Those emails were one of the key supports that kept me going during treatment. It was so amazing to have someone to share the fear, loneliness and pain with, and to able to cheer each other up during difficult times. We lamented the loss of our hair together, shared our new obsession with buying hats and supported each other throughout the whole ordeal. We even met in person in Sydney months after we'd both finished our treatment and will now remain life-long friends!
Meeting my new friend online also inspired me to find a way to help other Hodgkin's disease patients and survivors connect in that way. Early on I knew I wanted to do something constructive with my time off work that would help other people in my situation and given that my chosen profession was in websites, I chose to create a new website dedicated to helping others like me. The Australian Hodgkin's Lymphoma Network (www.ahln.org) is my way of trying to make it easier for other Hodgkin's patients and survivors to find each other at a time when they need it most. Even if it only helps a handful of people, I will be happy.
Another challenge that was unexpected was the financial hardship caused by cancer and the cost of medical treatment (and I was one of the lucky ones who was covered by private health insurance through my parents). Since I wasn't working I had no income but the medical bills just kept arriving. I had been saving up and had a sizable deposit for a house but was determined not to dip into these hard-earned savings if I could avoid it. I attempted to get a sickness allowance through Centrelink but this proved near impossible and so in the end I gave up and didn't even complete my application. My employer also told me about a way I could obtain salary continuance payments through my superannuation. This was also a challenge as there was lots of paperwork and a long waiting period before I would even receive any payments. In the interim I was lucky that my employer generously paid me a percentage of my wage while I wasn't working. I don't know how other people my age would cope financially though.
I also struggled with my self esteem and body image. Not only did I have to overcome concerns about my physical appearance being altered by the cancer treatment, but the prolonged break from work destroyed my confidence in my professional abilities. While I lost most of my hair through chemotherapy, I decided not to shave my head because it thinned quite evenly and I was worried about people in the street seeing me bald and staring. I didn't want every stranger to know I had cancer because I didn't want it to define me. I also found people got uncomfortable around me when I told them I had cancer so I avoided telling people unless I knew them well.
It was a big nuisance having with my hair constantly fall out on my pillow and clothes, but I preferred that to being completely bald. I also bought a wig that I never felt comfortable wearing and instead covered my very thin hair with a variety of hats. It was mostly upsetting seeing other women my age with long, thick hair and wishing I still had all of mine. On top of that, I put on a fair bit of weight and I'd never had an issue with my body before. Before diagnosis I used to go the gym regularly but I found I didn't have the energy to exercise much during treatment and the anti-nausea drugs made me constantly hungry. I did however, continue getting regular massages, which I felt helped my healing.
I was very lucky to have a great support network of family and friends during treatment. My family were there for me in every way possible and while my parents were overprotective and fussed over me a lot, I was glad to have them looking after me. My friends were great too and many people who I'd lost touch with over the years contacted me once they found out to offer their support. I didn't really see anyone besides my immediate family during my week of chemo treatment because I felt so awful but in my rest week afterwards I squeezed in as much social activity as I could. Because my immunity was so low, I mostly laid low at home to avoid catching a cold and so my friends all came to visit me. Most of them came over at night because they had jobs to go to and so I often felt quite lonely and isolated during the day.
My relationship with my boyfriend was a struggle during treatment too. First we both had to deal with our emotions about my diagnosis and the fear he felt about losing me. I then began to fear that he would leave me because it was easier than having to support me through the whole ordeal. It was so difficult trying to keep the relationship normal because I would get emotional whenever we argued because I was so emotionally overwhelmed already. Small issues were magnified and compounded because of everything I was going through. My boyfriend found it difficult to support me through it all, and eventually the cancer took its toll on our relationship and we broke up shortly before I finished treatment. Getting cancer made me actually realise I was miserable in the relationship and that life is too short to stay unhappy. I have now moved on and my current boyfriend knows all about my cancer journey and is amazingly supportive whenever I need to talk about it.
During my cancer treatment it didn't seem that there was much support out there for young adults with cancer in Australia and so I found comfort by keeping a journal of my thoughts and feelings, and visiting internet message boards. The internet was a major support for me, both as a resource and a connection to the outside world. It kept me sane, entertained me and helped pass the long days during treatment. It was also sometimes scary though when it seemed so many people were relapsing from the very cancer that I was battling. I put that into perspective however, and realised that those who had been cured were too busy living their lives to visit cancer websites and so it was the ones still fighting whose voices seemed louder.
Towards the end of my chemo treatment I also found out about OnTrac@Peter Mac, a program in Melbourne for young adults with cancer. It was a shame I didn't know about it sooner but it has been a great help nonetheless. I met with a psychologist who helps run the program and also attended survivorship support group meetings that were crucial in helping me make the difficult transition back into normal life.
The greatest challenge I face now is the ongoing and future effect of cancer in my life. Not only is there the constant fear of relapse to deal with, but I also have concerns about my fertility being intact and feel even more impatient (than I used to be) to get married and start a family. That kind of pressure can make having a relationship quite intense.
Despite the difficulties I've faced and will continue to face, I don't regret getting cancer. I am now more aware than ever of my mortality and the importance of my health. Cancer also gave me the chance to spend time with those I love and reminded me just how important that is. I guess what I want to share with people is that cancer doesn't have to be a completely negative experience; many positives can and do come out of it. I just wish that there was more awareness about how many young adults are facing this illness and greater promotion to young adults of the support available to them.