A little bit about you:
Name: Harjeet Kaur (Nickname: Niki)
Age: 33 years
City: Edmonton, AB
What was your diagnosis?
I was diagnosed with stage IV cancer (subcutaneous Panniculitis t-cell lymphoma complicated by secondary HLH (Autoimmune disease). It’s an aggressive type of cancer and rare diagnosis with only 150 cases reported worldwide.
What year was it? What was your age at the time?
It was diagnosed after three months staying in the hospital on August 28, 2019. I was 32 years old.
What is something you’ve done that you’re really proud of?
Beat this shit out of me and gone through stem cell transplant treatment during COVID-19 pandemic. I spent 32 days in isolation during the whole process with no family members around; that was the most challenging time for me knowing that anything could happen to me during this process. I feel proud to have made it this far and to have a transplant, which is probably the hardest thing I have ever had to do in my life to date. Life never gives you a second chance; I was lucky to have one in my life. I had my rebirth on April 14, 2020.
What is a top item on your life to do list?
I had a wish list of things I wanted to do once all this is over, however, isolation has put things on hold.
Stay healthy and stay fit. I would like to travel to India to see my close family and meet my close friends once COVID-19 is gone. Travel to places, which I always wanted to, go skydiving on my 35th birthday, and adopt a kid.
What are your hobbies?
Listening music, Netflix, painting, reading etc.
What was your life like before your diagnosis?
I was living my life, travelling, and enjoying each moment of life. I moved to Canada in May 2018 to settle here. Before that I was in Dubai for two years, and before that I was in the UK for six years where I did my masters and worked for a while. My life has been a rollercoaster ride. I am happily married to a chef; I used to love food and try new things and party every week.
How did you find out you were sick? What led to your diagnosis?
I started having daily fevers all of a sudden, accompanied by family doctor visits and then emergency visits. A few weeks later, I was asked to get admitted to the hospital since my CT scan lit up at few spots. I was hospitalized for three months for unknown fevers and daily rigors episodes with no other symptoms. It took the doctors three months to diagnose this type of cancer.
What were your first thoughts when diagnosed?
“Why me? How is this happening to me? What have I done wrong to deserve this? Why at this point in my life; I am only in my 30s.” I used to have a positive outlook on life. I was petrified as hell about what will happen to my family, my loved ones, if I die. I don’t want to leave the world like this. Life is vital to me. I had many plans for the future. I can’t lose faith and hope.
In which hospitals are/were you treated?
University of Alberta Hospital & Cross Cancer Institute for my chemotherapy, Tom Baker Cancer Institute in Calgary for my allogeneic stem cell transplant.
What did your treatment consist of?
My treatment plan was six cycles of CHOEP, six cycles of GEMCis (salvage chemotherapy), and an allogeneic transplant (seven days of conditioning chemotherapy and radiation therapy), stem cell transplant.
There have been months that I was bedridden in the hospital due to pain; aching bones; nausea; high fever; exhaustion; no sense of taste; mouth sores; tingling fingers; skin and nail changes; chemo brain, which can affect concentration and focus; mood changes; and — most importantly — being extremely tired and weak.
It’s a mixture of feelings that moves deep into your soul and will change your life physically and emotionally. The physical changes of having cancer have certainly affected me mentally.
What is your current medical status?
My recovery has been really slow; my blood counts are still on low side, I am neutropenic and given Grastofill injections every week so I can fight infections. Every Monday I have to go to the hospital for my blood work, and once in every three weeks, I meet my oncologist to overview my blood reports and overall health. I am still not out the woods yet. I still have a very long way to go in terms of recovery.
Life after cancer:
How is life different for you now post diagnosis?
It’s been a long journey to get here and at some points it felt like this day would never come. I am six months old now post stem cell transplant and still neutropenic, hence isolation. As hard as this is, I know I am one of the fortunate ones to have my beautiful family right by my side and my close friends phoning and texting daily about my recovery.
Honestly, my body and my mind are begging for a break. I have been through a lot already. I have accepted this as a moving point in my life, which has made me stronger for life ahead.
During this whole journey, I have battled many hardships. I cried and I was anxious about what will happen next. Will I survive and win this battle? This messed up my head but I had to stay positive to keep my strength. The only way to cope was to keep a positive mindset, stay healthy, and have faith in God.
What is/was the toughest part about having cancer as a young adult?
My life was moving in the exact direction I had dreamed of. I wanted to have kids, travel, and build my future in this country — and now this. I guess life had some different plans for me. Being diagnosed with cancer is news no one wants to hear in their lifetime. I lost my fertility and was thrown into menopause at this age. Lost my vision in my right eye during the chemotherapy process. I’m dependent on my family at this point of time were I should take care of them.
What really helped you to keep going?
The only way to cope was to keep a positive mindset, stay healthy, and have faith in God. I decide to face this challenging time with strength, determination, and positivity every day. I am grateful for my incredible husband, family, and close friends who went above and beyond to support me during these hard times.
What kept you busy during treatment?
Watching Netflix, writing about my cancer journey, playing board games, and spending time with my family and close friends.
How are you connected with Young Adult Cancer Canada? How did it happen?
One of my friends whom I met in Dubai used to live in Canada earlier and was a part of this group. She suggested that I join this group. Also, a nurse at cross cancer institute suggested it to me.
Did you feel isolated from your peers since your diagnosis? If so, how did/does that affect you?
I’m incredibly grateful for my family, my life-partner, and close friends who have been with me at every step.
I was in isolation for 32 days during my stem cell treatment. I was completely alone and scared as hell. I have been trying to put on a brave face, but I was utterly terrified.
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?
I was given no time to discuss it. The day after I was diagnosed, they started my chemotherapy as I was really sick for last three months. I was booked with fertility specialist after my fifth chemo and before my stem cell transplant to discuss the other options.
How has your cancer experience affected your body image and your relationship to your body?
Losing my hair was horrifying. It’s a part of who you are and losing that makes you feel naked, different, not pretty. The physical changes of having cancer have certainly affected me mentally. I swear I don’t even look like myself anymore with a swollen face, eyes, lips, so much dryness, and the radiation tan.
I have lost most of my muscle mass from legs and thighs. I have become so skinny that I could not walk even for 15-20 minutes. My hands used to be so shaky that I couldn’t pick up my phone or do day to day things. I was on sleeping pills for couple of months as I couldn’t sleep at all after my stem cell process.
What are some lifestyle changes you’ve made since your diagnosis?
I’ve been exercising, eating healthy, and sleeping normally. I have joined various cancer groups to keep myself busy and also to be with those people who have been affected by this trauma.
I started doing some new things in my life now, like painting. Mandala art was my favourite during my treatment and have been writing about my cancer journey.
Resources and recommendations:
Which books/movies/podcasts/TV shows/etc. would you recommend?
- The Secret
- I Am Not Your Guru (Tony Robbins)
Netflix motivational series:
- Tidying Up With Marie Kondo
- The Magic Pill
- Abstract: The Art Of Design
- Girl Boss
- Life in Pieces
- Money Heist
- Treating Blood Cancers “A deeper drive into MRD: A conversation with Gail Roboz”
- Blood, Sweat and Smears “Hemophagocytic lymphohistiocytosis (HLH)”
- Cancer Care Connect workshop “Managing the cost of living with cancer”
- Sick Boy “This is not the end of me: lessons on living from a dying man”.
What are your favourite blogs and websites for passing the time?
I follow blogs:
Medium is great online platform to read short stories. I like social media platforms like Pinterest, Instagram, Twitter, and Facebook.
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
Not yet; would love to in future.
Stay in touch:
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
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