Harjeet's Blood Cancer Journey: AYA Cancer Week
My name is Harjeet and I am a Stage IV cancer survivor.
In August 2018, I migrated to Canada from India with my husband to start a new chapter of our lives and grow our family. But life had other plans.
I was diagnosed with Stage IV subcutaneous panniculitis T-Cell Lymphoma, a rare type of blood cancer, in August 2019. At the time of my diagnosis, there were only 150 cases of my type of cancer reported worldwide.
By the time I was diagnosed with cancer, I’d been in the hospital for almost 3 months with only two symptoms: high fevers, and daily rigor episodes. Every doctor I had seen before my diagnosis thought that I just had fevers or a viral infection that would have gone away with time. I was never taken seriously. But after a lot of advocating for myself, they finally did the tests. CT scan, PET, MRI, endless biopsies, blood work, and surgeries. Only after all these tests were done was I told that I have Stage IV blood cancer.
At the age of 32, my life was completely flipped upside down. This blood cancer was also complicated by HLH (a condition where white blood cells build up and damage organs). I was not sure what would happen to me next or if I would be able to fight this cancer after being so sick for so long.
First, I went through chemotherapy. Some of my cancer cells did not react to the chemo at all unfortunately. I was told that the only option for me to survive this cancer was to complete a stem cell transplant. I had to go through an Allogeneic stem cell transplant in the hospital during the Covid19 pandemic. It was even delayed by a month, as I was scheduled for March 2020 but delayed until April 2020. This was an extremely difficult time for me in my family, as I wasn’t sure if I would make it out of the hospital.
I had to be by myself for this entire treatment. No family members were allowed with me due to the hospital’s Covid restrictions. I was completely isolated for 32 days for this stem cell transplant, fighting for my life every single day and dealing with an intense amount of pain. I just had to keep HOPING that I would be able to leave the hospital again to see my family.
Luckily, I was able to push through and eventually leave the hospital. The delays did not end there though, as my follow-up appointments were also pushed back due to problems caused by the Covid pandemic.
What is one thing you want others to know about your experience as a young adult cancer survivor?
Being AYA cancer patients & survivors, we are not taken seriously by our doctors or healthcare team. Before they are proven wrong by a positive cancer diagnosis, many doctors will believe that we are too young to have cancer and will try to find some other reason for our strange symptoms.
My advice to other young adults: If you feel that something isn’t right in your body or you feel sick and can’t explain why, please go to the doctor. And even when you go to the doctor, if they try to brush you off, advocate for yourself! We advocated for my health before my cancer diagnosis, and I still do today if I feel something is not right.
Throughout all of this, I still grieve for my life before cancer. Being a young adult cancer patient or survivor is HARD, and I always wish that I never had cancer.
What is one thing you want to tell others in the young adult cancer community during Adolescents and Young Adults (AYA) Cancer Week?
I was completely lost when I came out of my cancer treatments. I didn’t want to share my cancer story or talk about the fact that I had cancer at all.
Then, I discovered cancer communities. I joined a few online groups and started sharing my journey and experience there. This helped me immeasurably to work through my post cancer treatment PTSD. I built connections and made some amazing cancer friends.
Sometimes, you need supporters who can understand what you’re going through physically, spiritually, and emotionally. Groups for AYA cancer patients are crucial, especially online groups as we may be scattered throughout the world.
Lastly, volunteering is very important to me. Not just sharing my story online, but being able to physically help those in my community. It's enabled me to truly begin my mental healing process.
Photo courtesy of the author.