A little bit about you
City: Lewisporte, NL
What was/is your diagnosis? Neuroblastoma
What year was it? What was your age at the time?
My initial diagnosis was in 2012 at age 19. I relapsed in 2013.
What is a top item on your life to do list?
I’d like to continue to share my poetry and writing publicly, and one day in the future I would like to open my own gym and fitness facility.
What are your hobbies?
Fitness is an extremely big part of my life, so I spend a lot of my time at the gym where I train. Weightlifting has been a huge part of my healing process since my diagnosis for both physical and mental health. I also spend a lot of time writing poetry and fiction. I’ve been a writer ever since I can remember. I share a lot of my poetry on Instagram.
What was your life like before your diagnosis?
Prior to my diagnosis, my life was pretty typical for a 19-year-old. I was studying English language and literature at Memorial University. I was extremely social and overall enjoying the university experience.
How did you find out you were sick? What led to your diagnosis?
Prior to my original diagnosis, I was having the classic signs of gallstones and was in pain every time I would eat certain “heavy” foods. My family doctor ordered an ultrasound to see how my gallbladder was doing, and that was when it was discovered that I had multiple neuroblastoma tumours in my abdomen. However, when I relapsed a year later, I did not show any classic signs of relapsed neuroblastoma. The new tumours appeared on a routine check-up MRI.
In which hospitals were you treated?
I was treated at both hospitals in St. John’s and Grand Falls-Windsor, NL.
What did your treatment consist of?
My treatment consisted of:
- Two laparotomy surgeries to remove the tumours
- Multiple surgeries to insert a port-a-cath and Hickman lines
- Seven rounds of chemotherapy — some being weeks at a time — around-the-clock in-patient infusions
- The chemotherapy drugs consisted of cyclophosphamide, topotecan, cisplatin, melphalan, busulfan, vincristine, etoposide, and doxorubicin
- Twelve rounds of radiation
- Autologous stem cell transplant
- Daily Neupogen injections
- High dose painkillers (Morphine, Codeine, Dilaudid, etc.)
- Endless blood and platelet transfusions
- Several bone marrow biopsies
What is your current medical status?
Because my cancer is rare in adults, I will be monitored for the rest of my life, but I have been stable since June 20, 2014. I completed treatments in September 2014.
Life after cancer
How is life different for you now post diagnosis?
Life is very different since cancer. On a day-to-day basis, I struggle with the physical and emotional side effects my cancer and treatments have left me with. I now have hearing loss and tinnitus (constant ringing in the ears) caused by one of the chemotherapy drugs used in my treatment. Some days are harder than others, and I often get frustrated because hearing loss makes communication more difficult than it was pre-diagnosis.
I also now have an inability to regulate body temperature which oftentimes makes me extremely uncomfortable. I’m either freezing cold or very warm which, in turn, causes me to sweat a lot.
I deal with chronic fatigue on a daily basis and now have a very high tolerance to caffeine (not a good thing!). Cognitive issues are also a huge hurdle that I’ve had to learn to deal with. “Chemo brain” or “brain fog” as it is usually referred to has become a challenge in everyday life. I have a hard time remembering things, forget what I’m talking about in the middle of a sentence or change the topic in the middle of a sentence without realizing it. The forgetfulness has become a huge insecurity in my life, but I’m trying my best to work through it and find ways to cope.
The emotional challenges that come from a cancer diagnosis and life after cancer are difficult. I have been diagnosed with PTSD, depression, and anxiety due to cancer.
Socially, my circle of friends has become very small. I like to have genuine connections and relationships with the people in my life. I have lost many friends that were part of my life pre-cancer, but the ones I have in my life now, I wouldn’t trade for the world. YACC has given me a circle of people that I not only call my friends, but rather, my family.
What is/was the toughest part about having cancer as a young adult?
There are many tough parts about having cancer as a young adult. For me, isolation was extremely difficult. None of my friends had cancer, so I often felt like I had nobody to talk to about what I was going through or how I truly felt. Many of my friends walked out of my life during this time.
How I changed physically was also a tough part while going through cancer. Prior to cancer, I had long hair, was healthy and fit, and overall confident with how I looked and carried myself. After my first round of chemotherapy, I lost all my hair. I was constantly in a cycle of losing and gaining weight, and any muscular strength that I had was completely gone. Body dysmorphia is something else I struggle with as I am left with the scars from multiple surgeries and often feel like I’m in a body I didn’t ask for.
One of the most difficult parts of having cancer as a young adult for me is the inability to conceive naturally. This is not the case for all cancer patients, but infertility is a huge issue. I went into early menopause right away when I started my treatments due to the chemo, radiation, and stem cell transplant. Because of this, I will never be able to conceive children of my own. This caused me to go into a deep depression for years, and even though it is still very difficult for me to talk about, I have found ways to cope with these emotions. I am very angry and bitter towards cancer taking away this part of my future.
What kept you/keeps you busy during treatment?
During treatments, I spent more time in the hospital than I did at home, and if I managed to be discharged from the hospital, I had to stay in a city that was four hours away from where I lived. It was a difficult time, but I often spent it watching Netflix, painting, or writing.
How are you connected with Young Adult Cancer Canada? How did it happen?
I became connected with YACC shortly after I finished treatments in 2014. A fellow YACCer introduced me to the group.
Since 2014, I have been to several Localife events, The Big Cancer Hook-up each year, Survivor Conference in 2018, and both Virtual Survivor Conferences in 2020 and 2021.
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?
My oncologist and I discussed fertility options before treatments. Sadly, my cancer was far too aggressive to put on hold to go through hormonal therapy and harvesting my eggs for future use. The cost of freezing eggs was also a financial hurdle at the time that I could not afford.
How has your cancer experience affected your body image, and your relationship to your body?
My cancer experience has affected my body image and my relationship to my body. During the end of my treatments, I gained 40+ pounds. Carrying that excess weight on a smaller frame made me extremely self-conscious. I was very fit and healthy prior to treatments, so getting back into a healthy lifestyle was one of my main priorities during my recovery. I spent many days hating my reflection in the mirror, but eventually got to a place where I learned to speak gently to myself and to be thankful for all that my body had done for me to get through cancer. It didn’t happen overnight, but I am back to my healthy weight and my strength has returned to what it was pre-diagnosis.
What are some lifestyle changes you’ve made since your diagnosis?
I was very healthy and fit before cancer so I’ve returned back to my habits of a healthy lifestyle such as eating more nutrient-dense foods, weightlifting, running, etc. I was never a big drinker, but I have cut out alcohol completely. I try to take more time for self-care and do the things that make me happy and calm my mind such as reading and journaling.
Resources and recommendations
What are your favourite blogs and websites for passing the time?
A great resource I have found (other than YACC) has been Elephants and Tea. It is a platform where cancer patients, survivors, and supporters share their stories through blog posts and through the Elephants and Tea magazine.
Stay in touch
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Yes, I would love to help others facing cancer challenges. I can be contacted via my social media linked below.
Below is a poem I wrote for two special friends that are no longer with me — Whitney and Shelli (attached is a photo of me with Whitney in 2014).
By Sammi Martin
You were here only days ago
A heart beating
But in an instant, your eyes closed
For the last time
Never to open again
Tears shed around you
Your soul, gone to an unknown abyss
Lost from this earth
Your spirit to live among us
Like an angelic being
That you already were
In your physical form