Nicole Georgina Furey

Name: Nicole Georgina Furey

Age:  21

Hometown: Avondale, Newfoundland

What school did/do you attend? Memorial University of Newfoundland

Do you work? I am a part time Smoking Cessation Counsellor with the NL Smokers’ Helpline through the Lung Association. I also work part time with the Sea Cadet program, which is a youth organization.

What are your career goals? I plan to graduate university in 2013 with a bachelor of social work. After that my plan is to obtain my masters degree of social work though the University of Toronto. I’d like to focus my studies on health and mental health.

Your Cancer experience:

How did you find out you were sick? What event(s) led to the diagnosis?

My first sign that something was not quite right was back and neck pain. This started when I was about thirteen, but it was blamed on a bad fall I had when I was twelve. When I was about fifteen I noticed I was tired all the time. I would go to school, come home and sleep until supper, do some school work, and go back to bed. When I was about eighteen I noticed my vision would flicker if I looked far right or far left. Shortly after this, I developed feelings of numbness and tingling in the entire left side of my body. The pain got worse and worse, and I became too tired to do anything.

Throughout all these years I saw doctor after doctor, and no one could find anything wrong. I was tested for blood pressure issues, anemia, vision problems, arthritis, scoliosis, and diabetes just to name a few. I know now that young adults are often misdiagnosed because their symptoms are thought of as just a “stage” of growing. I think this is what happened to me.

Sadly my cancer was missed on three x-rays and a bone scan. Finally, on one of many visits to my family doctor, he said the only idea he had left was to send me to a neurologist who would send me for an MRI. Thankfully, the MRI picked up my cancer and I was diagnosed.

What was your diagnosis?

I was diagnosed with a Chordoma tumor, which is technically a bone cancer. It is a very rare cancer. The statistics are about one in a million people! Chordomas grow at the top of the spine and sometimes at the bottom of the spine. However, my Chordoma was allowed to grow for so long that it had pushed itself inside my skull and was resting on my brain, making it both a brain and bone cancer. I was told it was one of the largest Chordomas they had ever seen. It had pushed my brain stem from a straight line into the shape of a 7. They were amazed I was walking.

What year was it? What was your age at the time?

I was diagnosed in 2009. I was nineteen years old.

In which hospitals were you treated?

I had my initial biopsy at St. Clare’s Mercy Hospital in St. John’s, NL. Once it was determined that I had a Chordoma, I flew to St. Michael’s Hospital in Toronto where I had three surgeries to remove most of the tumor. Four months later, I traveled to Boston, MA where I received eight weeks of Proton Radiation at Massachusetts General Hospital.

At what level of education were you at diagnosis? 

I was in my third year of university, completing my second year of my bachelor of social work. Leaving school was one of the hardest parts of the whole process for me. I had worked hard at getting into a competitive faculty and then I had to leave. Luckily the School of Social Work was fantastic to me and held my spot in the faculty until I was ready to return.

What were your first thoughts when diagnosed?

I was scared. I was also relieved that FINALLY someone knew what was wrong with me. It was confirmation that I was not a hypochondriac and this was not in my head. I cried out of sadness, fear, and relief. I knew I would have to be strong for what was ahead of me, and that was one of the few times I broke down during the whole process.

How did your family react?

My parents were devastated, along with the rest of my family. I’m not sure if my younger siblings really understood; I wasn’t sure if I really understood, to be honest. My family was my support team throughout the process. I was never alone for one appointment, radiation treatment, surgery, etc. They stuck by my side the whole time. I couldn’t have asked for more.

How did your friends react? Were you treated any different?

I had a hard time telling my friends I had cancer. They knew that I had a tumor that had to be removed, but most of them didn’t know just how bad it was until rumors started circulating that I was dying while I was away getting surgery. They were upset that I hadn’t told them the full extent of things, but they were also very understanding. Things returned to normal when I got home; all of my friends were still my friends and I was still Nicole. Sometimes though, I have a hard time relating to people my age because I’ve been through something that has changed my outlook on life. I’m not as carefree as they are.

What did your treatment consist of?

In Toronto I had three surgeries (15 hours, 15 hours, and 14 hours each). I was in hospital for five weeks to the day. I had a feeding tube and a tracheotomy so I could not eat food or talk for the entire five weeks. I had to relearn how to walk after each surgery. When I was released (on St. Patrick’s Day 2010), I was weak, tired, and fragile. The muscles in my legs were completely soft from not walking for so long. I remember my legs shaking as I walked down the steps to leave the hospital. I was just so happy to be going home though. Surprisingly I did not have too much pain after I left the hospital. I had (and still have) a lot of sinus issues since some of the surgery involved removing a sinus bone. I wore a neck brace for two months and basically stayed at home so I could have help doing the daily routine.

Five months later (August) I went to Boston for radiation. I had to go there because this type of radiation, Proton Beam, is not available in Canada. The treatment was eight weeks long, every weekday, for a total of 39 treatments. The first week of treatment was the easiest, but then I got tired and nauseated, which was an everyday thing. I lost the hair on the lower part of the back of my head, which was just starting to grow back from the surgeries. That was hard. It fell out in a matter of one day.

Chemotherapy was not an option for me as it does not work on Chordomas. This was a good thing and a bad thing in my opinion. It was good as I did not have to endure chemo, but bad in the way that the radiation HAD to work—I had no other options.

On the last day of radiation, I had treatment at 8 a.m. and I was on a plane by 11 a.m. I was so excited to go home. The tiredness and nausea lasted until Christmas 2010 (two months). It caused me to lose 40 pounds, but this wasn’t a bad thing since I had gained weight from my lack of activity when I was sick.

What is your current medical status?

This is a tricky question for me to answer. Right now, all my treatments are done. I’m being monitored by CT Scans and MRI every few months, and so far they have all looked great. I guess that means I am in remission!

How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?

Today I feel as if I am a stronger person in many ways. Physically I know I can handle anything. I have been through the worst pain you can imagine and I have come out okay. Emotionally I am still trying to get through some things; it was a trying year to say the least. My relationship with God has developed into a strong and trusting relationship through this experience. My confidence has also grown. I know I can get through whatever is thrown my way with the help of my family, friends, amazing doctors, and of course, God.

What was the toughest part of your challenge?

I mentioned that I found leaving school extremely hard. You may think that this would have been the least of my worries, but as a 19-year old who felt like her life was just starting to get on track, this was devastating. Another difficult thing was that I had never heard of someone with a Chordoma, and I knew no one my age with cancer. This was scary.

Physically, the hardest part was just feeling like crap every single day. In the hospital I was on strong pain medications, and they played with my mind. Looking back I think I was beginning to get depressed before I was released. After I was released I was still dealing with sinus issues, pain, nausea, etc. This was also hard.

Finally—and no one really prepares you for this—was reintegrating into a normal life after I was “better.” For an entire year I had every day planned—whether I was in the hospital, going to appointments, or getting treatment. When I came home I wasn’t sure what to do with myself while I was waiting to start school. I had to figure things out again. Everyone else’s life goes on as normal, and I felt like I had to begin again. It was very weird.

What is the best part of your challenge?

I have said before that I am, in some small way, grateful for the experience of being a cancer patient. I am proud to say I am a cancer survivor. My relationship with God has been strengthened, and I understand myself more. I have connected with a community that has empowered me.

What really motivated you to keep going while you were sick?

My biggest motivators while I was in the hospital were my parents. They would take eight-hour shifts with me each, sleeping at the hotel in between. They would never leave me. I had perfect balance between my parents. My father would push me to get out of bed and take those first few steps after each operation, and my mother would hold my hand and let me cry. They were amazing. I knew I wanted to get better not just for myself, but for them as well.

What lessons or messages have you taken away from your experience?

The biggest thing I have learned through this experience is to listen to your body. Looking back, I should never have gotten as sick as I did. I should have been more firm with my doctors. I knew something was wrong. You need to be your own advocate for your health. Without your health, you have nothing.

What are your thoughts and feelings about your illness now?  How have they changed since before your diagnosis?

When I was first diagnosed I had no idea what a Chordoma was. I wish I didn’t have to know what it is, but I do. I was never angry that I got sick. My father said to me “I’m just so upset it had to be you.” The way I thought of it was “why not me?” Why would it be better for a child or a mother to be ill? Cancer doesn’t work like that. I know that now.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

Talk to your doctor! Tell them when you feel something is not right. Push for tests to be done. If you’re not satisfied with the results you’re getting, find a new doctor. Keep talking until someone listens to you and says “I believe you and we will figure this out.” Don’t let yourself get to the point where you are dying like I did.

Did you attend any support groups during your challenge?

 I did not attend any support groups, but while I was being treated in Boston I went to a music therapist class that was offered for free through the hospital. The therapist was amazing. She would let me borrow guitars to take back to the hospital and teach me easy songs. It was something to look forward to every week.

If you did not attend a support group, why?

My mother wanted me to attend a support group that was offered at the hospital in Boston for young adults with brain cancer. I cringed every time she mentioned it. I wasn’t ready to talk to other people about my experiences, and I wasn’t ready to hear other people’s stories when I had to be focused on myself and getting better. I’m getting ready to go to a YACC Retreat, which is sort of like a support group. I’m really looking forward to that.

How are you connected with Young Adult Cancer Canada?

When I started to feel myself after treatment I wanted to connect with a cancer community. I wanted to learn more and hear other people’s stories. I found YACC online.

If you are interested in connecting with Nicole Georgina Furey please email connect@youngadultcancer.ca.