Recap: Living with Hodgkin’s Lymphoma – Part 1

With a few weeks leading up to our annual Lace-Up for Cancer event, this inspiring story of Genevieve Haupt always reminds us at the Hospice Palliative Care Association of South Africa (HPCA) about why this event is so important to many people who have been affected by cancer. It’s the perfect platform to celebrate life together with others in the most beautiful setting!

Genevieve Haupt, researcher in higher education at the University of Cape Town for the first time participated in our annual Lace-Up for Cancer event in 2015. She celebrated 1 year of remission from Hodgkin’s Lymphoma. This is her story.

My life before diagnosis

I was in the second year of my PhD, which I was doing part-time and working full-time as a Researcher at the Human Sciences Research Council. I found myself in a very unhappy long-term relationship (5 years at the time), but as trying to make it work. I felt very alone in the relationship and at one point, I asked myself “if I should ever get diagnosed with cancer, would he care?” I would get my answer sooner than I expected. To this day, it still baffles me that this very specific thought crossed my mind. Looking back it might have been some kind of foresight or God preparing me for what was to come.

My diagnosis

I had suffered from an itchy-sore throat for the most of 2013. But looking back on the years preceding my diagnosis, I remember displaying other signs of the disease, such as night-sweats and fatigue. The fatigue I attributed to my job and studies as I had begun my PhD in 2011.

During 2013, I visited my GP several times with an itchy-sore throat and he assured me that it was a throat infection. My remedy for this was immune boosters and antiseptic throat spray to prevent it from becoming a cold or flu. Which seemed to keep it at bay.

But at one point, I think roundabout June 2013, I noticed a mass at the base of my neck, which I assumed was a tension knot. In July 2013 I attended one of my Doctoral Weeks at Rhodes University and while in attending a seminar I began to feel very tired and a bit shaky. One of my colleagues noticed. I also mentioned the knot to her and she responded by saying the location of the knot seemed odd for a tension knot. I decided to see a GP in Grahamstown and he said that it could be a swollen lymph node as a result of a throat infection. He gave me some antibiotics, but said I should go to my GP when I return to Cape Town if the swelling hasn’t subsided.

By the time I returned to Cape Town (a week later) the lump had still not subsided. I then went back to my GP, who sent me for blood tests and an x-ray and gave me stronger antibiotics. Both the blood tests and x-rays came back clear…so at this point I felt completely neurotic. I then began to ignore it but I kept feeling ill, i.e., I suffered from headaches, fatigue and the sore throat persisted, which resulted in me taking a lot of sick days.  At the end of August 2013, my then supervisor, asked me what was wrong with my health. At this point I mentioned the knot at the base of my neck to her and she responded by suggested I go for a second opinion and referred me to her GP in Town. I wasn’t driving at the time, but my colleague offered to take me. A few of my other colleagues used this as means of getting out of the office (and supporting me of course) by tagging along.

It was a female GP which was different, but she was so attentive and warm. She conducted a short exam and indicated that she wasn’t happy with the way it felt so recommended I have a sonar. While having the sonar, the examiner said I should lay still while she calls someone else, this is when I first realised that something must be wrong.

Two days later I went back to the GP, who then referred me for a biopsy. I met with the surgeon a few days later and had an incisional biopsy the following week, Wednesday, 11th September 2013. When the surgeon saw me to sign my release forms on the evening of the biopsy, I asked him what he thought it was and he said its either Lymphoma or Tuberculosis because both diseases have a similar cell make-up but he will call me by Friday to confirm the diagnosis.

My Friday the 13th

So on Friday the 13th of September at 6pm the surgeon called, it is Non-Hodgkin’s Lymphoma!!! He wanted to discuss it further, so we scheduled an appointment for that coming Monday. I was at home, in the apartment I shared with my ex, but had to call him because he wasn’t aware that I was crying after receiving the diagnosis. My personality is such, that I wanted to make everyone else feel at ease. So the first thing I did was send a message to all my loved ones who had been waiting to hear from me. My message read, “I have Non-Hodgkin’s lymphoma, Grade 1 (I didn’t know what this meant at the time but it was all the surgeon could tell me, because I still needed to do the staging of the disease), it is a blood cancer, and it is in the early stages and there is a good prognosis.”

One big issue with having two days before meeting with the surgeon was that I  am a researcher, so I spent most of the weekend researching all I could about Non-Hodgkin’s Lymphoma.

Which was a big waste of time, because when I met with the surgeon the Monday, he made a correction and confirmed that it wasn’t Non-Hodgkin’s, but rather Hodgkin’s Lymphoma. More specifically it was Nodular Sclerosis Hodgkin’s Lymphoma, which more commonly affects women (), and younger adults, with the mean age of 28 (✔, another criteria I match, Yay for me) but most importantly was that most patients are cured with current treatment and you are classified as cured after being in remission for 2 years….almost there