Why I didn’t tell my friends about my cancer diagnosis.

Video via SBS

This April, I’ll be celebrating two milestones – my 22nd birthday and my 2nd anniversary of having finished chemotherapy. Celebrating these milestones together can be a little odd, as it often feels like I’m simultaneously celebrating life and tragedy.

I cannot sugar coat it: being diagnosed with Hodgkin’s Lymphoma at 19 is the most tragic thing that’s happened to me. When I felt that lump on the right side of my neck, the ‘c’ word didn’t come to mind. At the time, I was incredibly healthy and fit and when I presented myself to the first doctor, he shrugged the lump off as “some kind of muscle sprain.”

It was only after a few weeks, several doctors, many procedures, and countless scans that I was told by my oncologist that I had cancer.

People who know my story often thought the reason I had difficulty ‘dealing’ with and ‘accepting’ my diagnosis is because cancer is such a difficult illness to come to terms with. Although this is definitely true, I also had a difficult time conceptualising my situation because of how fast everything happened.

The same week I was diagnosed, I needed to start fertility preservation, and then more scans and blood tests were needed, and more appointments and consultations and then all of a sudden I was in the ward having my first cycle of chemotherapy.

If you have had chemotherapy, then you would know just how debilitating it can be. Over the six months I had it, it often felt more like torture than treatment. My chemotherapy regime was not only painful, but impaired my cognitive abilities.

Now, when I think back to treatment, everything is fuzzy and it feels like trying to remember a forgotten dream. Even the diary which I regularly wrote in during those six months is littered with unfinished lines where I was too tired and nauseous to continue writing.

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That time weighed heavily on me. It felt like everything was going so ‘well’ until cancer hit, and I tried to maintain the high as long as I could. In hospital I could accept I was a cancer patient, but outside I didn’t want cancer to be my life or to be me.

sarah pfister insight cancer
Sarah. Image: supplied.

I didn’t tell many friends about my diagnosis, as I didn’t want people to see me as weak, sick, fragile or terminally ill.

Cancer patients are either portrayed to be really melancholic, on the verge of passing away, or we have to be super happy once the treatment has finished - a martyr for other young people. It only seems to be one or the other. I think because of movies like My Sister’s Keeper, society believes that the cancer becomes your identity, which is not how it is in real life. So when I did start telling people, I felt some of them started to only associate me with cancer but this is not who I am, but an experience I had.

Cancer was and always will be a large part of my life. For the rest of my life I will need to be scanned to confirm remission, and I am still not sure how the illness and treatment will affect my fertility and future health. However, I refuse to let cancer be my identity because I am so much more than my illness.

"I am so much more than my illness." Image: Supplied.

Before cancer I had things I wanted to do like be awarded a Juris Doctor, see the Northern Lights and create incredible experiences for myself and the people I care about.

After cancer, things have not changed. In fact, I now want to do even more. Coming to face with your own mortality deeply changes the way you look at things. I have realised how special it is to be alive and I intend to do as much as I can.

I want to acknowledge that not letting cancer be my identity might be easier for me than it would be for others. I may have lost my hair and have scars from surgery and procedures, but other young adolescent cancer survivors have lost a lot more. Some have lost limbs, senses, physical abilities and even their life trying to battle this terrible illness.

Nevertheless, I want to let you the reader know, that we are not defined by our cancer. So many of us have done incredible things after treatment and a few of us are even working hard on being advocates for other young people with a cancer diagnosis.

This April I will be blowing out the candle on two milestones, and it will certainly be a celebration.

Sarah is a guest on Insight tonight at 8.30pm AEDT on SBS, which explores how young people get on with life after cancer. #InsightSBS

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