A little bit about you:
City: Toronto, ON
What was/is your diagnosis? Non-Hodgkin’s Lymphoma
What year was it? What was your age at the time?
Diagnosed in 2013, I was 31.
What is a top item on your life to do list?
See as much of the world as possible
What was your life like before your diagnosis?
I was someone who was still trying to get her life and career together! I thrived with a bit of chaos, and struggled with fixed schedules and plans. I was around 26 when I finally decided on a career path — makeup artistry. Not an easy field to get in to, and five years later, I was still toiling away, getting some amazing opportunities, but still working part time jobs to supplement my income. The spring before I was diagnosed, I had been doing a barber course and living in London, England with a plan to come home for the summer, and then go back to London or Belfast (where I have family) to continue pursuing makeup in a different environment with new opportunities.
How did you find out you were sick? What led to your diagnosis?
During my last few weeks in London, there was a heatwave. I struggled. I felt weird, but couldn’t put my finger on why. I was tired and felt run down; I struggled to walk even a few blocks in without feeling off. I chalked it up to the heat and pollution. I’d been in London during a heat wave before and I had seen my sister struggle with it due to her asthma; I figured it was something like that.
I came home and went to a doctor. I didn’t have a family doctor, so he didn’t know me. I couldn’t point to any real part of me that felt wrong, and he basically wrote me off. Have you ever told a new doctor you have a generalized anxiety disorder? It’s one of the fastest ways to get someone to write off your concerns quickly. That being said, could I really blame him? He did an exam and there seemed to be nothing wrong.
So, I went on with life. One of my best friends in Calgary was getting married in early August, so the week before the wedding I got ready to hop on a flight to celebrate. The morning of the flight, I woke up and everything on the inside was desperate to get out any way it could. I felt awful, but somehow (Imodium) I got on that flight and made to Calgary where I spent most of the week asleep. The wedding was out in the countryside and we had lots of set up to do. I felt useless, I was so tired and was starting to get out of breath when I tried to help. The day after then wedding, I slept somewhere between seven and 10 hours and I had a terrible cough starting. On the drive back into Calgary, I had a conversation with my friend and her mom about how I would have to go to the doctor again when I got home. I was back to thinking I had adult onset asthma.
Second doctor visit, same as the first. This time though, I had the cough. He couldn’t deny the cough, so gave me an inhaler. The cough got worse, I was so tired, but couldn’t sleep because I was coughing so hard. Back to the doctor. This time, someone new. She did the same exams as the last doctor, and once again, couldn’t really find anything wrong. But she listened, and based on what she heard, she decided to send me for a chest X-ray, just to be sure. I made my way down to Mount Sinai, concerned, but not totally freaked, more happy that someone had listened and was trying to help me figure this out. Two hours later, my world was thrown on its head and I was on the phone telling my parents I needed them.
Something was wrong, but they still couldn’t tell me exactly what. Soon they told me that they suspected I had lymphoma, but more concerning in the moment was what was going on with my heart. A pericardial effusion, a fancy way of saying that a fluid had gathered in the sack around my heart, caused by the lymphoma. It’s really not supposed to be there. This was the thing that caused my symptoms, this was the thing that was an immediate threat to my life. This thing that had been slowly growing was also maybe the thing that saved me. If I had not had those symptoms, who knows how long it would have taken me to see a doctor or how much longer it would have taken to figure out that I had cancer.
Six years on, I still can’t figure out how to quickly summarize this story. But I’m grateful I have the chance to try.
What were your first thoughts when diagnosed?
Fear. Confusion. Anxiety. Less than a year before, my parents had lost a close friend to the same cancer. Would that be me? So much of the anxiety I had struggled with for years stemmed from a fear of getting sick. I had a bit of a problem with fatalism, and here was my worst fear manifested. Eventually I settled into numbness.
In which hospital(s) are/were you treated?
Princess Margaret Hospital, Toronto General, and Toronto Western.
What did your treatment consist of?
Six rounds of R-CHOP chemotherapy, 25 rounds of radiation.
Physically, because of the effusion and the fast growing nature of the lymphoma, I went downhill pretty fast. I had been living fairly normal with a little extra tiredness/fatigue. Within a few weeks of that first hospital visit, I struggled to walk from the couch to the bathroom. After my first chemo (which was terrible, don’t get me wrong), I actually had a brief window where I felt better. The chemo was attacking the effusion which provided some relief to my breathing. Mentally, I was numb. Mostly when I had to talk about it, it was with a joke or a laugh. The classic if I don’t laugh, I’ll cry. When the fear broke through the numbness, it was intense, but when it passed, I went back to being numb and powering through.
What is your current medical status?
In July 2019, I was given the five years all clear. As close to being considered cured as you can be!
Life after cancer:
How is life different for you now post diagnosis?
My body went through a lot of changes post cancer. Chemo, radiation, steroids, they fuck you up. I’ve been five years cancer clear, but have yet to make it through a year without some new health issue.
Emotionally, I’m still coming to terms. Some days are great, some days you get told you have cataracts most likely caused by your treatment and you want to rage at the world. It’s hard to move past something that keeps sending you little reminders that your life will never be the same.
What is/was the toughest part about having cancer as a young adult?
Feeling alone, watching your friends continue on with their lives and feeling a few years behind.
What really helped/helps you to keep going while you were/are sick?
I resorted to numbness, it worked for a while! Then, not so much. That’s when family and friends come in real handy.
What kept you/keeps you busy during treatment?
How are you connected with Young Adult Cancer Canada? How did it happen?
Post treatment I was feeling lost and scared and not sure what the hell to do next. I can’t remember exactly how I came to find YACC, I think it was a Google search, and soon I was at my first conference. It was heavy and hard, but I came away feeling more hopeful, alive and with faith that I could figure my shit out.
“[My first Survivor Conference] was heavy and hard, but I came away feeling more hopeful, alive and with faith that I could figure my shit out.”
Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
Originally, I thought no, no one had talked to me about fertility, but with time I have realized it was mentioned as a possible side effect by my hematologist at one of my early appointments. Options were not brought up to my memory, but there was a real time crunch because of what was happening with my heart. I think even if they had told me the options, I wouldn’t have been able to/chosen to do it. I was focused more on living than what would come after.
Resources and recommendations:
What would you add to a treatment-day playlist?
Something peaceful to sleep to if you, like me, are rendered comatose by Benadryl.
Which books/movies/podcasts/TV shows/etc. would you recommend?
Anything funny. I stuck with shows I knew and had seen before. I had a very steady diet of Parks and Rec, Community, and Arrested Development.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
Reach out and find people to connect with. Everyone deals in their own way, and YACC is great for trying to help you find that way. I didn’t always actively engage with my YACC peers, but I found support and hope just hearing other people stories. There is a lot to be said for realizing you are not alone. Not just in diagnosis, but in everything that comes after.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Happy to help however I can!
[If you would like to connect with Kelly, email [email protected] and we’ll forward your message to her.]