Young Adult Cancer Canada - Community - Profiles

Holly Le Tual

2009-09-15T14:25:12Z

Age: 28

Hometown: St.Johnâs, Newfoundland

Do you work?
I am working as an IT Business Analyst for a Satellite Communications Company, here in St.Johnâs.

How did you find out you were sick?
I simply went for my yearly checkup with my family doctor. At the time, I had no idea anything was wrong, no symptoms of cancer and I felt I was in perfect health.

What year was it?What was your age at the time? 2008, I was 27

What was your diagnosis? Cervical Cancer

What were your first thoughts when diagnosed?
I think everyone is scared when they hear the âCâ word. My first thoughts were wondering how bad it was and if it had already spread to any of my organs.

How did your family react?
My family was worried, but very supportive! They were with me every step of the way. My parents helped with my children, and my boyfriend kept me smiling and laughing everyday.

How did your friends react?
I have a very large circle of friends. My Friends at work and in my networks were amazing! Everyone was very encouraging and very supportive.

What did your treatment consist of?
My treatment consisted of several biopsies, laser treatment and eventually a hysterectomy.

What is your current medical status? Cancer Free!!

What was the toughest part of your challenge?
Iâd say the toughest part was having people worry about me. Itâs hard to see your parents upset.

What was the best part about having your challenge? You learn to appreciate your health and to not take things for granted!

What really motivated you to keep going while you were/are sick?
While I was going to appointments and resting up after surgeries, my children kept me going. Theyâre awesomeâ¦.no matter how tired I was, or whatever else was going on, I was still their mom! They read me stories while I was resting, and bought me snacks. They definitely kept me smiling and happy!

What lessons or messages have you taken away from your experience? Live! Just enjoy every day like itâs your last!

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?
Never ever skip your yearly check up! Women take that for granted and think thereâs nothing wrong if youâre feeling ok. Iâve been pushing all my friends to keep up with their checkups and to never assume anything â âcause you really just donât know.

How are you connected with Young Adult Cancer Canada?
I think this is a wonderful organization and I am so happy to be a part of it â even in some small way.

Heather Watt

2009-08-31T20:20:11Z

Age: 31

Hometown: Calgary

What school did/do you attend? Shawnessy High

Do you work? I am a stay at home mom/ was a facilitator for a 12-step group before I got sick.

What is your career goal(s)? To be a social worker/child & youth counselor

How did you find out you were sick? What event(s) led to the diagnosis?
I had a DNC back in march 2009 and 2 days after when I was recovering from that I was putting lotion on my neck and I felt this strange lump on the left side it was a fair size and I just new it wasnât like any other cysts I have ever had. This one was harder and I couldnât move this one around when I touched it so I phoned the next morning to make an appointment for the following week with my family doctor she sent me for a x-ray and an ultra sound. It was, I think, a week later I was phoned to say the dr. would like to see me so I went in and she said I think we need to get a biopsy of what was seen but most always lumps in your neck come back benign âI just knew mine wasnât going to be benignâ

I waited 5 weeks to get my biopsy done and the pathologist took 2 separate samples and as I was leaving he said it would take a few weeks for the doctor to get the results I thought thatâs great and left. It was the very next morning after meeting with the pathologist and my 2 biopsyâs were done I was called into see my family doctor. I remember packing my daughters bag so she could go to a friendâs house while my husband and I were at the doctors. All I could do was stare at my little one and cry I just knew that I had cancer before I was even told. My husband and I sat there waiting for my doctor to walk in and when she did she couldnât even look at me, I knew! I looked out the window at a busy street watching everyone go by hearing her words say âI am sorry you have cancerâ. I just asked for a hug and cried. My husband just held my hand. I wanted nothing more to get out of there and see my daughter.

Three days later I was sitting in the surgeonâs office, he said âno problem I will remove the entire thyroid gland take a look around take out anything else that looks suspicious and that should be thatâ. On July 8th I had my surgery a thyroidectomy waited 2 weeks for the final results to come in and the cancer never spread beyond the thyroid gland.

But I can say about a year before I had a physical done and it showed that the blood cells in the bone marrow where not normal but nothing to be too concerned about âI had no idea what my doctor was talking aboutâ. I did complain in all of 2008 I didnât feel well and nothing was ever found or looked into. They thought it could have been associated with my kidney& bladder disease. Close to becoming anemic I was told to take some iron pills and left it at that. I was told perhaps I had some depression and I should talk to someone.

In the last 3 months before surgery a tumor on the thyroid was pressing on so much I couldnât lay flat or on my left side or I couldnât breathe it started to cause a lot of pain in my face and the left side of face would totally swell up, the pain would go up my neck through my left ear and around my head and no pain meds seem to relieve the pain and pressure. I felt like I was going crazy. Talking, chewing, turning my head began to be too painful closer to the time of surgery and my voice became really husky.

What year was it? What was your age at the time? July 2009. age 31

At what level of education were you at diagnosis? Addiction studies mount royal college 2007

What was your diagnosis? Papillary Carcinoma

What were your first thoughts when diagnosed?
With not knowing much about my cancer at the time I though I was going to pass away like my dad did from cancer in 2007, until the surgeon looked at me and sat down beside me and said it is going to be okay you are going to be okay. From that moment I clung to my husband and just cried and said please God not now I have a daughter who needs her mommy and a husband who needs his wife. I donât want to do this I just donât want to go through this.

How did your family react?
Oh boy my mom & auntie cried, my family just said we will be here to support you. I think everyone was just stunned nothing really was said. There where some family memberâs that where just great and where completely there others werenât just the way it was. My mom has been amazing her support for me, my husband & daughter has been everything I could have ever asked for and more.

How did your friends react? Were you treated any different? I had friends that remained great through it all while other friends have walked away. I have been treated differently and I donât think on purpose. Cancer is a very scary disease and some can handle it while others just canât.

What did your treatment consist of?
Removal of my thyroid gland. My surgery wasnât too long ago so I am still healing from that. Also the right side of my incision completely opened up10 days after the surgery so that has been a nightmare trying to get that healed up and closed again. Cleaning that everyday was awful but it had to be done. I have my first appointment with the Tom Baker centre on October 7th, 2009. My body has had a tough time adapting to not having a thyroid thatâs for sure.

In which Hospital(s) are/were you treated? Surgery was at the Peter Lougheed in Calgary.

What is your current medical status? The surgeon believes he was able to remove all the cancer because he took out the thyroid gland but thinks I will need what he calls âthe radiation cocktailâ to make sure.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Physically: I am nauseous, donât sleep well, have little appetite, cold and hot sweats, dizziness, my fingers, toes and face can go numb, totally tired, low energy, face sometimes twitches, weight gain, husky voice and lately, I’m itchy with burning skin.
Emotionally: I am a wreck, I feel lost, I donât know who I am anymore, I cry at the drop of a hat.
Socially: I donât fit in any more, I am treated differently either no one knows what to say so they donât say anything, I am not invited any where like before so I am not sure what happened I had cancer not a contagious disease.

What was the toughest part of your challenge?
Finding who the New me is now and saying goodbye to the old me, letting go of the hurt, anger, sadness, fear they didnât get all the cancer, just going into a normal life because I donât know what normal for me is anymore or right now. Seeing the tears my daughter would cry because mommy was too sick to take her to the park or play with her like other mommyâs could. Hearing how mad she was at me for having cancer, she asked me once âmommy will you go to heaven like papa did now?â It broke my heart. I said no honey papa had a different form of cancer, she really suffered because of my cancer and I have a hard time forgiving myself for not being able to get out of bed to play with her or when I lost my voice for 3 weeks after surgery I couldnât even talk to her very well. Also not being the wife, friend, daughter, mom, niece, sister, cousin I once was and the guilt over that is what tairs me up.

What was the best part about having your challenge?
Receiving a second chance at living my life and reaching my goals. Knowing that it is okay to walk away from anything negative that holds me down. I really believe that God has a plan for me and what that is I donât know yet but I canât wait to find out. I feel going through this challenge in my life has taught me to stand firm and proud with both feet planted on this earth and that it is possible to after all these years of not knowing who it is that I am, or meant to be can still be found. Cancer has taught me that I must live my life with every ounce of being. I cannot worry about what otherâs might think is best for me I will now be the judge of that. I canât wait to laugh, live, trust, too love and enjoy my journey with those that I can count on. Cheers!

What really motivated you to keep going while you were/are sick?
My daughter has been my biggest motivation to keep going. She was amazing through my sickness. At 4 yrs old she would lay beside me and say âmommy I am so proud of youâ seeing her smile and hearing her laughter certainly helped. The friends & family that have remained through this at the hardest moments is what kept me going. Hearing my husband say âI admire your strengthâ

What lessons or messages have you taken away from your experience?
That life isn’t always perfect and it can be taken from you at any time. To love and laugh at all times, to hold the people I love the dearest close to my heart and leave the negative people behind. I have one life and to never let someone take away what makes me happy, what I am proud of, and what I love, ever again.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I am at a point where I feel completely lost. I am angry all this happened and hurt that cancer destroyed relationships that I loved. But knowing that there is an end in sight to how sick I feel at times does ease some of the frustrations.

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? Listen to your body.

Did you attend any support groups during your challenge? No I havenât.

If you did not attend a support group, why? Surgery wasnât that long ago and I havenât felt ready.

Would you if one had been available? Not sure

Do you think attending one would have helped you? Not sure

How are you connected with Young Adult Cancer Canada? Canadian Cancer society

How did it happen?
I was talking to a lady from the Canadian Cancer Society who thought that the retreat that Young Adult Cancer Canada was having would really do me good. So I signed up and I am so happy I did ï

What are your thoughts/feelings on Young Adult Cancer Canada?
I think it is great. What a blessing to be able to connect with other young adults that are feeling similar emotions. It is a great way to just be ourselves and not have to defend why we feel a certain way about all the issues that arise for young people during cancer and what kinds of issues and emotions we face at a young age surviving cancer. Thank you for accepting all the different kinds of cancers no matter what stage or type, it is very hard to find that kind of support

Brandy Worrall

2009-08-31T20:06:34Z

Age: 33

Hometown: Mifflintown, Pennsylvania

What school did/do you attend? Regis College, Boston College, UCLA, UBC

Do you work? yes

What is your career goal(s)? Iâm a writer/editor

How did you find out you were sick? What event(s) led to the diagnosis?
I had detected a lump in my breast, but my doctor told me that I was too young to have breast cancer and sent me on my way. three months later, I went back in because it was getting bigger. this time, there was another doctor who examined me because my regular doctor wasnât in the office. she ordered an ultrasound, which led to a mammogram, which led to a core biopsy. I had three tumours spanning the size of 6 cm in my right breast.

What year was it? What was your age at the time? July 2007, 31 years old

At what level of education were you at diagnosis? grad student, but I already have masterâs (from ucla)...Iâm completing my second masterâs now.

What was your diagnosis? stage III breast cancer

What were your first thoughts when diagnosed? âno wayâ

How did your family react? shock

How did your friends react? Were you treated any different? a lot of my friends got scared because I had no family history of breast cancer, and I was quite young, so a lot of their thoughts were of the vein, âit could happen to me.â

What did your treatment consist of?
I started on a chemo trialâ6 months of aggressive chemoâfollowed by 2 months of daily radiation, then a double mastectomy with reconstructive TRAM-flap surgery and then further reconstructive surgery. It was brutal, especially because at the same time, I still had to be mom to two young children. But luckily, I had a lot of support.

In which Hospital(s) are/were you treated? BCCA and Mt. St. Josephâs

What is your current medical status? one year of remission thus far

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
It took me a while to reintegrate back into ânormalâ life, and just when I thought things were going well, my spouse confessed that he had had an affair while I was recovering. So Iâve been having to deal with that challenge, and it seems like life keeps coming at me at a supersonic speed.

What was the toughest part of your challenge? Thatâs hard to say!

What was the best part about having your challenge? Being forced to pick myself up

What really motivated you to keep going while you were/are sick? My kids

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

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? Iâm the wrong person to answer that question, I think!

Did you attend any support groups during your challenge?
I went to Friends for Life and Inspire Health to help me during my treatment, and yes, it was extremely helpful.

How are you connected with Young Adult Cancer Canada?
My oncologist suggested that I contact this org after my last follow-up last month. She was mostly concerned about how I am coping with life post-cancer.

Tiffany Symes

2009-08-31T19:46:04Z

How did you find out you were sick? What event(s) led to the diagnosis?
The reason I found out I was sick was that I constantly had the cold and it wouldnât go away. I was back and forth to the hospital for months but they just said I had a bad cold and gave me antibiotics. The last time I went to get antibiotics there was a different doctor there and she took one look at me and said that there was something not right. By the time they found my cancer it was already in its third stage and I was told that there was nothing they could do for me. 19 years later IM STILL GOING STRONG

What year was it? What was your age at the time? It was year 1990 and I was 6 months old

At what level of education were you at diagnosis? Hadnât started school yet

What was your diagnosis? A very rare type of childhood cancer called Neuroblastoma

What were your first thoughts when diagnosed? Being so young I didnât really understand at the time. It wasnât until I started to get older that I realized how serious cancer was.

How did your family react? My family was devastated and slightly mad with the world.

How did your friends react? Were you treated any different?
Not when I was diagnosed I wasnât but growing up through school I was always teased about my scars from my many different surgeries that I had while trying to remove the three pound tumor I had on my kidney

What did your treatment consist of?
I took both chemo and radiation but I was unable to take all of my chemo because of extremely low blood and my body was just too burnt upâ¦all of my teeth in front turned black from all the chemo as well

In which Hospital(s) are/were you treated? Janeway childrenâs hospital and the childrenâs hospital in Montreal

What is your current medical status? Going on 19 years of hopefully being CANCER FREE

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I never really felt like I fit in amongst my peers. They didnât see life in the same way that I did and that always made me feel uncomfortable. Taking the chemo at such a young age jumpstarted my puberty by four years so I was never on the same level as the girls in my class. It was a very emotional rollercoaster growing up because I felt that no one could relate to the things that I was going through. Now that I have gone through so much and understand why I was feeling like that, I donât let the small stuff bother me. I feel that having cancer has changed me for the better and I am a PROUD cancer survivor!

What is/was the toughest part of your challenge? Seeing what It was doing to my family

What is the best part about having your challenge?
I now donât let the small things in life bother meâ¦I live each and every day to the fullest. I am closer to my family than I ever imagined I could be and I just donât take anything for granted

What really motivated you to keep going while you were sick? Knowing that I had a wonderful family cheering me on!

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

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Cancer is a very powerful word and it also has very powerful impacts on the people that it touches. I think everything happens for a reason and it was meant to make me stronger and to appreciate life right from the beginning

Did you attend any support groups during your challenge?
I have been in a cancer support group for about five years now and I find it very helpful to just be able to hear what other people are going through and to be able to relate to them the best I can.

How are you connected with Young Adult Cancer Canada?
I just found it on the internet and I was immediately drawn to it. I think it is an awesome way for young people to connect with each other and I know that they are not alone in this battle.

Susan Jones

2009-08-07T14:58:42Z

Hometown: Montreal, Quebec

How did you find out you were sick? What event(s) led to the diagnosis?
My partner, at the time, felt a lump on my breast and suggested I get it checked out. Thinking it was probably a cyst (since there were a lot of women that had cysts on my motherâs side of the family), I wasnât worried but I went to see a walk-in clinic doctor (I didnât have a family doctor) and I was very calm, confident and blasÃ© about it. Even the doctor didnât seem too worried about it due to my age, but just to be safe, she scheduled a mammogram. Throughout the mammogram, the subsequent ultrasound and then biopsy, I still wasnât thinking it was a big deal. A little calcium deposit, maybe a cyst, but cancer? Nah, not cancer!

It was only when the doctor told me that I had a malignant tumour, there was a brief moment when I had to actually process âHmmm.. malignantâ¦benign.. Benign = the good one and malignant = the cancerous one. Did she really say malignant? No, no, no… she must have meant benignâ¦â She continued on to say that it was breast cancer. That was the defining moment when it all hit, and thatâs when I went numb (and a little deaf). I just remember feeling winded, like being kicked in my stomach and I couldnât breathe. I had tears streaming down my face, but I couldnât cry I was in so much shock. I had trouble getting the words out.. âokayâ¦ what do I do now? What happens?â
How DO you deal with being diagnosed with cancer? What do you do? â¦.

âWhat do I do now?â was all I kept repeating.

What year was it? What was your age at the time? It was October, 2004. I was 32 at the time.

What was your diagnosis? Stage I DCIS Breast Cancer (and subsequently I found out I was ER/PR positive & HER2-NU positive)

What were your first thoughts when diagnosed? My first coherent thoughts were: âHoly crap, holy crap, holy crap! This canât beâ¦ holy crap, holy f*cking crap.â Then my thoughts turned to âhow come I see the doctorâs lips move but I canât hear what sheâs saying? I think Iâm in shockâ¦.â

How did your family react? Unfortunately, my mother had passed away 4 years previously due to bone cancer and my father had passed away several years prior to that. My 2 brothers were a little freaked out and I believe they compared my situation with our motherâs (âmy baby sister is going to die tooâ kind of reaction). Unfortunately, my oldest brother couldn’t make it down to visit me for various reasons and my other brother had a newborn baby. He wanted to visit me but couldnât (babies = cute, but cesspool of germs). At least we kept in touch over the phone during the course of the treatments.

How did your friends react? Were you treated any different?
Not only feeling like I was kicked in the stomach for getting cancer, and feeling kicked again because what little family I had left I felt slightly abandoned by, it was another defining moment in my life where I found out what kind of friends I really had. Most of them, not all, werenât true friends. They were drinking buddies or âfair weatherâ friends and they either just quietly walked away or I eventually stopped contacting them since they couldnât provide any real support or be there for me.

My partner at the time also took the low road and broke up, not really giving any real explanation (in hind sight, it was my cancer that was too inconvenient for him). Those 3 situations that happened one after the other in such a short period of time pretty much broke what was left of me down. I was so low, so empty, so fragile and alone. Those âgiftsâ I had (those who remained friends) did what they could to be there for me, support and listen to me and to cheer me up, but I still had this big gaping hole in my soul.

Life however is always a balancing act and so with the bad there is always the goodâ¦.somewhere. Slowly out of nowhere, other people, some complete strangers, and others whom I hadnât seen or heard from in years began to pop up and permeate through my life. They helped and comforted me and (unbeknownst to them) they restored my faith in humanity once again. It was very hard not to be bitter towards those who inadvertently hurt me, but those who stuck around and those who came into my life were such great blessings. I wouldnât have traded those experiences whatsoever.

What did your treatment consist of?
Medical side
1 lumpectomy with sentinel node biopsy (negative), 1 re-excision (the margins werenât clear) 6 shots of Zoladex (to shut down my ovaries) 4 rounds of AC chemo (adriamycin & cyclophosphamide once every 3 weeks) and 24 radiations, all out patient. I tried Tamoxifen a few times but holy (insert swear word here) it was too strong for my body to handle. So now I roll the dice.

How did I feel?
Shitty. No other real way to describe it. Really f*cking shitty. Among many other symptoms, I had no energy, I felt nauseated beyond words, my bones and joints always ached terribly for a few days right after each chemo session and after the Zoladex, I couldnât sleep more than an hour at a time, I had a weird taste in my mouth (not the metallic taste, but something far yuckier), I had chest pains and I had such bad indigestion. I only began feeling human towards the last week before the next chemo round, which was quite a head trip. I finally feel good enough & strong enough to go outside, socialize and walk around and then âboom!â another round of chemo. Oh. Joy.

In which Hospital(s) are/were you treated? Montreal Jewish General Hospital

What is your current medical status? 5 years in remission (and counting)

What is the toughest part of your challenge?
The toughest thing I have worked on and am still working on is trying not to let âthe fearâ take over my present life (and itâs a hard one not to become neurotic every time I get a cold or have a health issue). For the most part, Iâm heading in a good direction in my life but sometimes that fear creeps back in and throws me off.

What is the best part about having your challenge?
Re-learning those life lessons and having an opportunity to apply them (pace yourself, enjoy the moment, enjoy each moment, calm down, trust and ride that wave where ever it takes you, and breathe. Remember, everything is ephemeral). Before I got cancer, I was on a different path. I was wrapped up too much in my work and in everyone else that I forgot/ignored parts of âmeâ along the way. I still have the same core values as I did before, but Iâm not as hard on myself as before. I encourage myself and love myself much more than I ever did before my illness. I would never brazenly be grateful for having cancer, but it certainly brought a lot of good in my lifeâ¦ once I endured and survived all the crappy stuff.

Did you attend any support groups during your challenge?
During my treatment, there was only one breast cancer support group that I tried one time. I didnât feel that I could connect with the issues of the older women who were already menopausal or were grandmothers, so I didnât go back. I worked on my issues on my own and with the help of a psychologist. It was a very long process, but it helped. Through a weird turn of events 4 years later, I came across a Young Adults With Cancer support group that I have recently attended and I think itâs great. I feel much more connected to the people in this group, regardless of the different types of cancer we all had/have. We are all in the same stage in life and have roughly the same issues (work, dating, wanting/being able to start a family, intimacy, etc.)
Did you find it helped?
Absolutely, eventhough Iâm not comfortable speaking in a group setting. Itâs way out of my comfort zone but itâs all good. It helps to share and it helps your perspective when you listen to others.

What are your thoughts/feelings on Young Adult Cancer Canada?
I think itâs a fabulous organization for our generation that falls between the cracks of too old for infant/adolescent and too young for mature/older. I am very grateful that it exists and I hope it continues to flourish across Canada because the future young adults (unfortunately) will need this kind of support.

Ann-Marie Waddell

2009-08-03T13:12:48Z

Age: 24

Hometown: Ardrossan, Alberta

What school did you attend? Arch Bishop Jordan High School and Concordia University College

Do you work? Administrative Assistant for Brent MacIntosh

What is your career goal?
Something related to the Health Care Field (Patient Navigator)

How did you find out you were sick? What event led to the diagnosis?
Hives, that covered the whole body, lots of colds, tonsillitis, not digesting food, muscle weakness, anemia, diabetes

What year was it? What was your age at the time?
2004, 18 years old

At what level of education were you at diagnosis?
Just graduated high school

What was your diagnosis?
Stage 4B Thymoma

What were your first thoughts when diagnosed?
How could this have happened? Iâve been healthy all my life! How could I have a tumor in my body!

How did your family react?
Disappointed, upset

How did your friends react? Were you treated any different?
From close friends, I was treated the same.

What did your treatment consist of?
I had a sternotomy and thoracotomy while in the hospital, was only able to get a
biopsy down because the tumor was too big to take out. Then Did 5 cycles of Chemotherapy (Cisplatin, Doxerubincin, Vincristine & Cyclophosphamide) and then went for another surgery (transverse sternotomy in September 2004). Followed by 25 treatments of radiation.

About 2 Â½ years later a PET scan revealed the tumor was starting to come back, so I did a different type of Chemotherapy (paclitaxol and carbonplatnim). I also went through a 3rd surgery in June 2007. I began working with a Chinese Herbalist as well as receiving Vitamin C intravenous therapy and Ozone therapy. Since then I did not undergo anything until November 2008 where I began attending a Clinical Trial in Bethesda, Maryland.

When I was first diagnosed I was very sick! The chemotherapy was very rough. Once I got used to the chemo I had a bunch of emotions come back in May and got very emotional. I experienced every single side effect, losing my hair, mouth sores, chills, night sweats and even went into menopause.

In which hospitals were you treated?
Cross Cancer Institute
University of Alberta for the first Surgery
Foothills Hospital for the last 2 surgeries.

What is your current medical status?
Currently undergoing clinical trial chemotherapy at the National Institutes of Health in Bethesda, Maryland. Tumor is still present, clinical trial chemotherapy is keeping the cancer stable.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I don’t have as much energy, don’t party quite as much, have to take things a little slower post diagnoses.

What is/was the toughest part of your challenge?
Living in limbo as far as treatment goes.

What is the best part about having your challenge?
Learning a lot about the Canadian Health Care System.

What really motivates you to keep going while you are sick?
There are so many things I would like to accomplish and take care of, while Iâm still so young.

What lessons or messages have you taken away from your experience?
No matter how bad your situation there is always someone that has it worse off then you.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Yes lots of my thoughts and feelings have changed many times. My priorities have shifted many times throughout my diagnosis.

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?
For cancer in general it is always good to eat healthy and lead an active lifestyle. Also it is good to get certain prescreening exams done to check for any recent or new cancers developing.

Did you attend any support groups during your challenge?
Yes a support group with all types of different adults and different types of cancers.

If so, what was it like?
It was good, nice to talk to other people who are going through the same things

Did you find it helped?
Maybe a little.

If you did not attend a support group, why?
If there was one for young adults in Edmonton I definitely would have attended.

Do you think attending one would have helped you?
If would have made me make more young friends with adults with cancer in Edmonton, Alberta.

How are you connected with Young Adult Cancer Canada?
Found it on the Internet.

What are your thoughts/feelings on Young Adult Cancer Canada?
It’s great; I’ve been waiting to find a Organization specifically meant for Young Adults with Cancer in Canada.

Jane Shulman

2009-06-16T18:10:41Z

Age: 32 (writing in June, 2009)

Hometown: Montreal, QC

What school did you attend? Concordia University (BA in journalism)

Do you work?
Iâm not working now. Before I was diagnosed, I worked mostly in the health and environment sectors coordinating events and developing public education projects for non-profit groups. I worked as a freelance journalist and publicist too.

What is your career goal? Thatâs a great question. I am re-examining that right now!

How did you find out you were sick? What events led to the diagnosis?
The short version is that my health had been declining for 2 or 3 years, and bottomed out in mid-March, 2008. I had an appointment with my family doctor for something else and mentioned that I had night sweats, terrible nausea and a low-grade fever. She suggested I have a blood test as a precaution, even though it seemed like I had the gastro that was going around. A nurse called me at work the next day and told me I needed go to the ER right away because there was a problem with the test results. She said she was taking my chart to triage and theyâd be expecting me. It turned out my immune system had basically shut down because my red blood cell count was so low. I spent the next four days in the ER while they tried to sort out what was going on. At the end of day two I met a hematologist who scheduled a bone marrow biopsy for the next morning. After some cajoling, she told me she suspected a malignancy, and when I asked what kind, she said lymphoma. The next two weeks were about blood cultures, scans, a lymph node extraction after the bone marrow biopsy was inconclusive, and horrible, unbearable waiting. I was pretty sure I knew what was going on. I just wanted the confirmation. And the symptoms I was experiencing were unrelenting. (The long version of the story, about delayed diagnosis, medical drama as well as physical and mental anguish that lots of AYAs living with cancer can probably relate to, is one Iâd be happy to share with anyone interested.)

What year was it? What was your age at the time?
Diagnosis was April 11, 2008. I had just turned 31.

At what level of education were you at diagnosis?
I had done some courses to get ready to apply for grad school.

What was your diagnosis?
Diffuse Large B-Cell Non-Hodgkinâs Lymphoma, Stage IIIB

What were your first thoughts when diagnosed?
âShit, thatâs what I figured. This is not good.â The first question I asked was what would happen if I didnât do chemo, and the doc said I would die. Soon. I was calm. I was processing. The doc and nurse looked at me like they were waiting for me to freak out, kleenex at the ready. I just wanted to get as much info from them as I could. I figured thereâd be plenty of time to lose it after the appointment. I donât think I actually lost it until months later though.

How did your family react?
I have two younger brothers. They were 29 and 17 when I was diagnosed. They had my back. I could feel how scared they were and I also felt their strength. My grandmother went to most of my chemo treatments with me. I think it hurt her more than me when nurses had to poke around to find my veins. My parents were obviously scared and upset. I canât imagine what they went through. My mother took care of me. I was determined to stay in my home, and I did.

How did your friends react? Were you treated any differently?
I think it was really shocking all around. Iâm closer to my friends than I am to a lot of my family. They have been amazing. They rallied around me right away, offering love and support and anything I needed. I was pretty isolated through treatment because my energy was so low. I didnât spend time with very many people and I was afraid theyâd forget about me if I wasnât around, but they really didnât. Some friendships have deepened. I did lose one close friend. But for the most part, people have opened their hearts and shared with me as much as I have shared with them.

What did your treatment consist of?
Eight 3-week cycles of out-patient chemo (R-CHOP). The side effects were typical chemo crap. They got worse as the poison accumulated in my body. I think chemo hit me hard because I was in such terrible shape when I started. Treatment started 4 days after diagnosis, which I later learned is unbelievably fast.
Halfway through treatment I saw the CT report from right before I was diagnosed, and my doc told me how bad the cancer had been. The radiologist wrote that there were too many tumours to count. There were also lots of lymph nodes involved. At the half-way point there was huge reduction in the number and size of tumours, which was great news. It made the second half of chemo, which was way worse than the first, more bearable.
Cancer is as much a mental struggle as a physical one. Some of the worst times I had were during the seven months after treatment, living in limbo when scans seemed to show that I still had cancer, and that it might have spread. I was so weak, and I was looking at the possibility of a bone marrow transplant or surgery to remove my spleen. I knew that my chances were best if treatment worked the first time around. The cancer experience had been more traumatic than frightening up to that point, but I was truly terrified by the possibility that treatment hadnât wiped out the cancer. As it turned out, what looked like cancer on the scans wasnât.

In which hospitals were you treated?
Jewish General Hospital and Montreal General Hospital.

What is your current medical status?
I was declared cancer-free on April 10, 2009 â a year less a day after my diagnosis.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
During treatment, I felt like my body had betrayed me. I didnât feel like I could trust my intuition anymore, and I felt so vulnerable â to disease, disaster or anything awful and beyond my control. Itâs taken a long time to rebuild my sense of security, and I think itâs based on different things now. Physically, Iâm getting to know my new body. I think of it as new because it really isnât the same after being ravaged by cancer and then chemo, and I donât expect it will be. Itâs not all bad â just different.

What is/was the toughest part of your challenge?
It was weird to be the only young adult on the chemo ward, but that didnât bother me as much as feeling like I was rendered invisible as a lesbian in the heteronormative medical environment. I gather oncology has come a long way in recognizing that thereâs a person behind the cancer, and thatâs great. But it seems the assumption is generally that the person is straight, white, middle class and in their 60s or 70s. Thatâs what the system sees most, and thatâs what itâs prepared for. Deviation is not necessarily unwelcome â itâs just not anticipated. I have been an out queer person my entire adult life, and was surprised to find myself coming out all over again when I got cancer. A nurse was doing a chart of my support network on the first day of chemo, and she asked about a boyfriend. I corrected her, watching her face carefully for a reaction, more out of curiosity than concern. I didnât give a shit what people thought before cancer â I sure as hell didnât care now. Nonetheless, it was frustrating to have to decide if I should risk coming out when I joined a support activity or met new staff. At this time when I was most vulnerable, I wondered if I would find a queer-positive environment that was geared to young adults. And if I couldnât, would I just settle for whatever was available? I lucked out with a terrific group, but I know not everyone has such awesome support. There are so few AYA resources, and almost no queer-specific AYA resources in North America. I had a terrible time finding queer people I could talk with about the cancer experience who were living it too.
Aside from that, fatigue/energy/stamina is a huge challenge. Money. Finding a job. Reclaiming my independence.

What is/was the best part about having your challenge?
I canât say that cancer has made me a better person or changed my life. I donât think there has been a best part for me. But Iâm glad to have met loving, kind, compassionate people through Cedars CanSupport who helped when I was at my lowest point. Iâm also glad to be connecting with people in the Hope & Cope, YACC and PlanetCancer communities. I am interested in focusing my activism on awareness-raising around young adult cancer issues, and developing queer-specific resources.

What really motivated you to keep going while you were/are sick?
I think I was on a mission to get it over with. I just worked at going day by day, or hour by hour if I had to, in order to get through.

What lessons or messages have you taken away from your experience?
Ask questions if you have them, no matter what. If youâre not getting answers, find someone else to ask. Itâs OK to switch doctors if youâre not getting what you need. Itâs OK, in fact itâs a great idea, to get a second opinion. (You would comparison shop for a computer â why wouldnât you consult at least two doctors when your life is at stake?) Psychosocial support is great, whether itâs talking with a social worker, a psychologist, joining a support group, a coping skills group, a yoga class, a meditation thing â whateverâ¦ It will almost certainly feel good, it will make you feel connected to something, it will take your mind to a different place for a while and itâll validate some of what youâre feeling.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Cancer fucking sucks. I still canât believe it. I suspect that even though itâs gone, itâll always be in the back of my mind. But I think itâll keep getting easier.

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?
Non-Hodgkinâs Lymphoma has been linked to pesticide exposure. Many cancers can in fact be linked to environmental toxins â i.e. the shit weâve put in the water and air over the last 60 or 70 years that is now killing us. I have no doubt this is what caused my cancer. If not something I was exposed to, then something carcinogenic that my parents or grandparents or great-grandparents were exposed to that became part of my genetic code and was set off, causing the lymphoma to develop. What can we do? Take a look at these: http://www.enviroblog.org, http://www.ewg.org/chemindex/term/449 and http://www.foodnews.org

Did you attend any support groups during your challenge?
The young adults group at Cedars CanSupport. I still go regularly. Itâs a creative arts approach that allows people to explore feelings about a variety of issues in a totally warm and embracing space. I canât say enough positive things about it.

How are you connected with Young Adult Cancer Canada?
It was mentioned at a film screening I went to right after I was diagnosed. I checked out the website that night and saw the post about the CanSupport young adult group, which I joined the next day. Thatâs where I met Karine, who now works at YACC. I think YACC is a phenomenal resource for information and connecting people. Even though Iâd worked in the cancer field for a few years, I hadnât thought about the specific needs of young adults with cancer until I was one of them.

Are you interested in helping others facing cancer challenges?
I would be particularly interested in being a resource for any lesbian, gay, bi, trans etc. AYA who would like to talk, but Iâd be happy to talk with anyone.

Matt Cook

2009-06-15T14:45:57Z

Hometown:Edmonton

What school did you attend?
St. Francis Xavier High school
What is your career goal?
Would like to do something in Healthcare, Oncology

How did you find out you were sick? What led to the diagnosis?
I was playing Junior A hockey, I constantly had ankle injuries and was in pain. After a routine xray I was told 8 cm of my bone was deteriorated.

What year was it? What was your age at the time?
2006, I was 18

At what level of education were you at diagnosis?
Just had graduated High School

What was your diagnosis?
Chondroblastic Osteosarcoma

What were your first thoughts when diagnosed?
What are my chances of survival

How did your family react?
They weâre quite supportive although very distraught.

How did your friends react? Were you treated any different?
My friends weâre also very supportive although unsure of how to treat me. A few friends weâre unable to deal with it which caused a bit of a strain on our friendship. Others weâre very supportive which strengthened our friendship

What did your treatment consist of?
31 weeks of chemotherapy with a surgery half way through. I received methotrexate, cisplatin , doxorubicin. Almost all of my treatments were inpatient. Normally I would be in the hospital for 4 days, 3 days out. Half way through my treatment they decided to amputate as per protocol. ( reconstruction or amputation). Mentally it was draining, I think the biggest toll on my body was all the different drugs and side effects that came with them. I was able to stay fairly positive until I went through an opiate withdrawal due to poor administration of the drug ( fentanyl). Side effects were all related to lethargy, just an overall cloudiness mentally. About a year after that I had a relapse, the cancer metastasized in my lungs, resulting in lung surgery to remove the spot.

In which Hospital were you treated?
Cross Cancer Institute Edmonton

What is your current medical status?
Cancer free

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I am definitely more spiritual. Physically It has been a bit of a challenge learning to adapt to a prosthetic leg, but slowly returning to norm. Emotionally it hasnât changed a whole lot, I do feel like Chemo messed up my brain a bit, just never feel quite like I used to.

What was the toughest part of your challenge?
Seeing friends, other cancer patients pass away

What is/was the best part about having your challenge?
Iâve learnt a lot about life, learned some valuable lessons I wouldnât have otherwise

What really motivated you to keep going while you were sick?
The chance that I might inspire someone with compromised health to do the same

What lessons or messages have you taken away from your experience?
Make the most of each day.

Did you attend any support groups during your challenge?
No

If you did not attend a support group, why?
I was happy doing my own thing, had a good support group of friends and family.

Would you if one had been available?
Yes

Do you think attending one would have helped you?
probably

What are your thoughts/feelings on Young Adult Cancer Canada?
Seems like a great outlet/resource

Daniel Stolfi

2009-05-25T16:39:37Z

Age: 26

Hometown: Guelph, ON

What school do you attend? University of Guelph

What is your career goal(s)? To be a successful Comedian/Actor. Have my own movie or TV show.
How did you find out you were sick? What event(s) led to the diagnosis?
I had a chronic cough, a sharp pain in my chest and I would wake up I in the middle of the night covered with sweat. I went to the hospital and the rest is history.

What year was it? What was your age at the time?
I was diagnosed in 2008 at the age of 25.

At what level of education were you at diagnosis?
I had graduated University with a degree in Theatre Arts

What was your diagnosis?
I was diagnosed with âstage III Acute Non-Hodgkinâs T-Lymphoblastic Lymphomaâ (A mouth full)

What were your first thoughts when diagnosed?
I had a feeling something big was going on but when the doctors told me I had cancer they followed it up by saying it was very treatable so I had an âI can beat thisâ mentality right from the start. I didnât know what I was in for though, as I had no prior experience with anyone else who went through treatment. It wasnât until treatment began that I realized it would be the most difficult thing I ever had to do.

How did your family react?
They were shocked, scared, and upset. But they were very supportive and encouraging right from the beginning.

How did your friends react? Were you treated any different?
My friends were pretty amazing and supportive. All of a sudden I had friends that I didnât even know were my friends. All but one of my very close friends were awesome. One just didnât know how to deal with it and we pretty much havenât spoken since I was diagnosed. His loss right? Ha ha.

What did your treatment consist of?
I was initially an in-patient at the hospital for 8 days being treated with some intense chemotherapy. I was then an out patient and had 10 days of radiation with chemo, and then I was in and out of the hospital on random occasions because of complications for a total of 40 days and nights. I go in for chemotherapy once a week every week for two years. I am currently in the maintenance and final phase of my four phase treatment.
Physically the treatment was incredibly difficult. I pretty much had every side effect that the chemo could dish out. Mouth Sores, Bone Pain, Ringing in my ears, Stomach pain, Insomnia, Anal Fishers (Anyone else get anal fishers? Those hurt like a #*%&@!) Hemorrhoids, Nausea and vomiting like you wouldnât believe, hair loss, lost 50 pounds. Anyone else unable to get a boner for a really long time? Ha ha. The list goes on and on. Mentally and Emotionally I had my ups and downs. Many more downs then ups for sure.

In which Hospital(s) are/were you treated?
Sunnybrook Hospital in Toronto ON.

What is your current medical status?
I am in remission and in the maintenance phase of my chemotherapy protocol. I am 14 months in with 10 months left to go.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)? Everything is different. It is a life altering experience.
What was the toughest part of your challenge?
I think it is hard to pin point one specific thing that was the toughest. Staying positive was tough when I was experiencing excruciating pain or when I was depressed. Trying to explain to people why it is so tough is the hardest thing to do I find. But I think the hardest thing for me may have been the sudden 180 your life takes in an instant. My life was completely flipped on its head and adjusting to a completely new way of living (just trying to live) was incredibly difficult.

What was the best part about having your challenge?
Ha ha. The best? Seriously? I donât know,.. The gifts. Ha ha. Just joking. I think it really helped put my life in perspective and appreciate things a lot more. I have always been a grateful person for what I have in my life but going through this just emphasized that for me for sure. I always thought I was surrounded by good people but now I know I am surrounded by amazing people.

What really motivated you to keep going while you were sick?
I am an actor and a comedian and making people laugh really helped me get through. I also told myself I would perform again so during my sickness I have been writing a one man show about my experiences, which goes into some of the comical aspects of the disease. Sometimes I think you have to laugh at this sort of stuff or it can just knock you out and take you over. My drive and passion to perform again forced me to get through this for sure and it still pushes me.

What lessons or messages have you taken away from your experience?
Be grateful for what you have and donât sweat the little things in life. The most important things in your life should be your health, your family and your friends everything else is just icing. But whatâs a cake without icing? Food is food, so shut up and eat it! Kidding.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Still sucks right. Wish it didnât happen. But Iâm alive right. I have learned so much from it and am still learning from it every day. I am thankful to be doing well and fighting.
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?
Eat your fibre! A lot of info will be thrown at you and it is easy to get overwhelmed. Do your own research. Do one thing at a time. Others may try to tell you they know whatâs best for you but only you know what is best for your body so listen to it and respect it.

If you did not attend a support group, why?
I had so many friends and family around to help. Also, the support groups consisted of older patients so it was tough to relate.
How are you connected with Young Adult Cancer Canada?
I was doing stand up one night in Toronto and a woman watching the show had attended the retreat in 2007 and came up to me after the show and we exchanged info. She directed me to the site and I watched the video blogs and it was like they were pulling the words right from my brain and it was such a turning point for me to see others expressing themselves in a way I only wish I could. I wish I had or known about this site earlier. I had gone through the âhardestâ part of my battle already when I finally saw the site.

Devon Ridgwell

2009-05-11T15:10:00Z

Age: 20

Hometown: Winnipeg, Mb

What school did you attend?High School â St Johns High School College - Urban Circle Training Centre Red River College

Do you work? I am on disability at the moment but I was working at Health Science Centre as a Health Care Aide

What is your career goal? I would like to be a nurse or a counselor I think I would be very good at both careers, I am very empathetic and a great ear for people.

How did you find out you were sick? What led to the diagnosis? I was having lots of back pain; I was misdiagnosed two times once in an emergency room and another by a nurse practitioner, I took my x-rays that the Doctor in the emergency room had gotten done to my chiropractor and he found the mass and rushed me to the emergency I was then diagnosed the same night.

What year was it? What was your age at the time? January 22, 2008 I was 19

At what level of education were you at diagnosis? I was trying to get into Nursing. I am also a college grad, graduated in June/07

What was your diagnosis? I was diagnosed with a Desmoid Tumor

What were your first thoughts when diagnosed?Truthfully, it felt like an out of body experience I was very grateful I wasnât alone and my dad was there when they told me because I wasnât all there I didnât believe it

How did your family react?My parents were my backbone and my support system, I didnât tell anyone other than mom and dad until my biopsy came back then I told my pastor and sisters after I had my surgery everyone else found out

How did your friends react? Were you treated any different? My friends treated me as if I had some sort of contagious disease, you find out who your real friends are and it made me appreciate the people who mean the most to me. The people at my church were very supportive and ALWAYS there for me.

What did your treatment consist of?
My treatment consisted of Surgery, which was on February8th/08, to remove the mass. It was a 13 Hour surgery that consisted of them removing the mass, which was fifteen pounds, four of my ribs on my left side, and half of my diaphragm and the muscle from my left leg to replace the muscle that was taken from my back. I was in the hospital for 37 days. If the growth comes back, I will have to have surgery again then radiation or chemotherapy on the area.

Physically I was alright other than the pain in the surgery area. Emotionally I felt like an outcast and I couldnât do the things I loved to do because I might hurt myself because of all the limitations. The side effects I had were depression and loneliness I never felt good enough for anyone, I never liked asking for help or guidance because I donât like the drama and the sympathy crap people give you cause they think your dying â¦

In which Hospital(s) are/were you treated?I was/am being treated at Health Science Centre in Winnipeg throughout the whole process and, the Manitoba Cancer Society which is apart of HSC.

What is your current medical status? I am currently in remission.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)? Life is very different for me now, I donât take anything for granted, I let the little things roll of my back. Socially I am not really active, I volunteer at my old school Urban Circle which I absolutely love, Emotionally I seem to be pretty good sometimes I need a good cry but heyâ¦ who doesnât

What is the toughest part of your challenge?I think the hardest thing about what I have gone through is trying to understand the Why this happened to meâ¦

What is the best part about having your challenge? Going through all of this has really shown me just how much my family loves and cares for me and how much having those good relationships means to someoneâs being.

What really motivated you to keep going while you were sick? Having faith in God and knowing that nothing will go wrong Iâm going through this for a reason and also Iâm the kind of person that if someone says Iâm not going to get or do something I want to prove them wrong.

What lessons or messages have you taken away from your experience? We donât know how long we have and we donât know what tomorrow brings but today Iâm going to live and be strong. Take one day at a time.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis? My thoughts are good thoughts nowâ¦ Before I came to terms with this diagnosis, I was mad at the world and very scared. Now I am peaceful and grateful to be able to handle it and have such a great support system behind me every step of the way.

What are some preventative measures that people can take to lower their risk of having an experience like yours? Since what I have is rareâ¦ They are no preventative measures.

Did you attend any support groups during your challenge? I didnât attend any support groups

If you did not attend a support group, why? I didnât attend a support group because the ones available, I was 20-30 years younger than everyone.

How are you connected with Young Adult Cancer Canada? My Doctor told me about this program. I am extremely happy to have this group and other Young Adults like me who understand what it is like and who have the same issues like I do to talk to.

Kelly Davidson

2009-05-04T18:04:11Z

Age: 29
Hometown: Petawawa
Do you work? Yes, as a Medical Assistant at Appletree Medical Group
What are your career goal(s)? To stay working in the medical field, mentor children/teens living with cancer and whatever else comes my way.
How did you find out you were sick? What event(s) led to the diagnosis?
Iâm a childhood cancer survivor so I was at a yearly follow up appointment when the doctor noticed the lump on my right breast. I had a biopsy and mammogram done.
What year was it? What was your age at the time? 2007 and I was 28 years old
At what level of education were you at diagnosis? I was working
What was your diagnosis? Breast cancer
What were your first thoughts when diagnosed? Shock, disbelief, couldnât believe that I would be going through cancer for a second time before I was 30 yrs old.
How did your family react?They were shocked but were/are the best supporters and they knew I had beaten it once before I could do it again.
How did your friends react? Were you treated any different?
They were shocked as well but didnât treat me any different. Some of them talked to me about it but others werenât sure how to go about it.
What did your treatment consist of?
I had 6 treatments of chemo over 18 weeks (3 taxotere, 3 FEC-the little red devil is what the doctors and nurses called it), a biopsy, lumpectomy and mastectomy. I was an out patient for everything.
To be honest I didnât really think about things that much, I just did what I had to do. There were times where I was sick, tired, bummed about what I was going through but just stayed positive and strong.
In which Hospital(s) were you treated? Ottawa General and Civic Hospital
What is your current medical status? In remission, YAY!!!!!
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I look at life totally different now. I donât sweat the small stuff; I think positively, live everyday to the fullest, laugh. Physically, nothing much has changed same with socially. I didnât let cancer change that about me. I changed my way of thinking and started thinking and taking care of me first.
What was the toughest part of your challenge? The toughest part to be honest is finding clothes that fit me properly.
What was the best part about having your challenge? The best part of my challenge was taking all the negatives and making them into positives and I get to have a really cool tattoo over my scar.
What really motivated you to keep going while you were/are sick?
My friends, family and myself. I just thought that this wasnât going to defeat me. I knew that everything was going to be alright and I was alive. My family was always there, they shaved their heads, they did a 12hr relay with me, they never treated me like I was sick.
What lessons or messages have you taken away from your experience?
I would have to say that no matter what you have to live everyday to the fullest. Try to turn the negatives into positives. Live in the now, donât think what if just do it. You have beaten cancer, nothing is too big for you to accomplish or achieve.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
My thoughts are that Iâve beaten it, nothing has really changed, and Iâm going to take everything in strides whatever comes my way I will take it on full force.
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?
Monthly breast exams and just know your body and if there is anything that seems out of the ordinary get it checked.
Did you attend any support groups during your challenge? No
If you did not attend a support group, why? I felt like I didnât need it.
Would you if one had been available? Possibly
Do you think attending one would have helped you? Not necessarily, I had my own support group, my family and friends.
How are you connected with Young Adult Cancer Canada? I became connected by contacting Karine after I received a pamphlet at a childhood cancer survivor conference.
How did it happen? By email
What are your thoughts/feelings on Young Adult Cancer Canada? I think its awesome, I finally found a group that I can share my story and people can relate.

Nadia-Arita Rasuma

2009-04-29T13:04:18Z

Age: 23

Hometown: Mississauga, ON currently live in Peterborough, ON (I was born and raised in Riga, Latvia. Iâve been in Canada since 2005)

What school did you attend? Sir Sandford Fleming College

Do you work? No

What is your career goal? My goal is to work in sporting goods field

How did you find out you were sick? What led to the diagnosis?
I had a mole on my leg. My mom and I talked before that it wouldnât be a bad idea to remove it sometime down the road. In 2006 I met my boyfriend Steve. He would always rub my legs while we were watching TV or give me a nice foot massage after a long day at school. I really liked him (still do ) so I didnât want him to notice that ugly little mole on my leg because I though that it might gross him out or something. So I decided to go and get it removed. (Silly but true )

What year was it? What was your age at the time?
I am not Canadian so for me to get my mole removed I had to go through the schoolâs nurse and then they sent me to get it removed at the local clinic. My first attempt to get it removed was August, 2006. For some reason nobody got back to me about my appointment or doctor Iâd have to see. So I waited a couple of months and went back November 2006. I got my mole removed right before Christmas break 2006 and I received the phone call saying that I had Cancer on January 2nd 2007. Canât really say that my year started off great.

At what level of education were you at diagnosis? I was starting my last semester in my 2 year college program

What was your diagnosis? Melanoma

What were your first thoughts when diagnosed?
I had no clue what melanoma was. I didnât know it was a type of cancer so I was more lost than anything. I called my mom after and she explained me everything. I really didnât think much. I donât think this whole thing got to my head till later on.

How did your family react?
My boyfriend, mom and step dad (family in Canada) were trying to be very positive and happy which helped a lot. My sister who travels a lot was really shocked but stayed positive as well ( my sister has the same shape and size mole on the same leg and spot-she refuses to remove it)

How did your friends react? Were you treated any different?
My friends-most of them freaked out. They were lot more negative (asking me when and if I would die etc.)

What did your treatment consist of?
I had to do very high dose of Interferon for a month (Mon.-Fri.) at Princess Margaret Hospital. I was really, really sick. I had to take Demerol every 4 hours to be able to function. I had to go through the first 3 days without Demerol and it was awful. I had a very high fever, bad chills; I had bad shivers, killer headacheâ¦etc. Pretty much every single part in my body was hurting. After starting to take the Demerol, things got a little better, but still there were a lot of side effects like-bad taste in mouth, headache, I couldnât eat anything but crackers(the ones they give at the Hospital) and green apples, I couldnât even drink water without adding lemon juice.

What is your current medical status? Cancer free

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I definitely appreciate life more and the little things that I didnât even noticed before. I started to take more care of myself and take time for me and my loved ones. Before Iâd do favors for people left to right and sometimes forgot to do my own work. It was a little weird going back to finish up my school after a 2 year break. All my class mates were no longer in school so I had to meet new people all over again.

Also, at first I was really insecure about myself-huge scars and my hair was really thin and just being different than others. But now with my boyfriendâs huge help I am even more confident than I was before. He loves me the way I am and he helped me to love myself the way I am. Overall I am a very happy person.

What was the toughest part of your challenge?
Scars on my legs-it was really hard to accept that especially when people walking by or sitting across me in the bus would keep staring at my scars with a very grossed out look. And of course the Treatment! (physically, emotionally)

What was the best part about having your challenge? It made me a stronger person and I think a better person.

What really motivated you to keep going while you were/are sick? My boyfriend and mom. Didnât want to see them upset.

What lessons or messages have you taken away from your experience? Donât ever think-âthat will never happen to meâ because thatâs what I thought.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
There are few things I really hate about it. One, I canât be in the sun anymore (I love summer, sun and tanning). The other thing is that I have to watch my body at all times for new birthmarks or changes in old birthmarks. I really donât like that because it can be really stressful.

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? Use sunscreen when you are in the sun. Watch you birthmarks and moles-remove the ones that are weird or bother you.

Did you attend any support groups during your challenge? No-I wish I did though.

If you did not attend a support group, why?
I had a social worked assigned to help with everything but I was avoiding her because at that time I though that it was stupid and I didnât want to be around people too much. Now, if Iâd have to do it all over again I would definitely use her help.

Do you think attending one would have helped you? Yes

How are you connected with Young Adult Cancer Canada? I just heard about it on TV. Decided to check out the website. Also I joined the Facebook group.

Dawn Cleary

2009-04-27T16:24:40Z

Age: 28

Hometown: Mount Pearl, NL

What school did you attend?
OâDonel High School, Memorial University, Concordia University

Do you work?
Presently, no, generally, yes:-) I teach ESL at the college and university level.

What are your career goal(s)?
I would like to do more teacher-training at the university level and Iâm very interested in doing more research, but Iâm still deciding whether or not a PhD is for me. I think I might also be ready for some career additions (I donât want to say career changes because I like what I currently do, Iâd just like to add something different). Writing perhaps?...

How did you find out you were sick? What event(s) led to the diagnosis?
How much time have you got? First of all, I donât like the word sick. Not because Iâm in denial, but because I never felt sick, ever. Tired, yes. Angry, yes. Shocked, yes. Not sick. In any case, my boyfriend (now husband) noticed that my breast was a little hard. I did a self-exam and found that there was something different, but not really a lump. I went to a GP who told me it was a cyst and not dangerous, and that I should see a specialist to do a fine-needle aspiration. The day before our vacation in France was to begin; the specialist could not drain anything, therefore discovering that this was likely a tumor. Whether or not the bloody thing was malignant was the question, so after an ultrasound the next morning, before our departure, 3 doctors agreed that the mass was not suspicious. I was told we should go on our vacation and do a core biopsy upon our return. We had an amazing time, except for the fact that the question mark over the mass in my breast was nagging. When I returned to the specialist for what I thought was a core biopsy, she told me that she had tested the cells which she did manage to draw from the fine-needle aspiration, and that they were malignant. About two weeks and several tests later, I learned that there were also 15 tumors in my liver. Words canât quite describe how that feels.

What year was it? What was your age at the time? It was in August 2008, I was 27 at the time.

At what level of education were you at diagnosis? I had finished my M.A. a year earlier.

What was your diagnosis? Stage IV breast cancer, estrogen-receptive, HER2 positive.

What were your first thoughts when diagnosed?
Holy f**k. Is this real? There must be some mistake. Iâm young, healthy, active, normal. What is going on? Iâm going to die. Iâm going to be sick, and die. What do I do now?

How did your family react?
My parents were devastated. My mother flew to Quebec immediately. My brother was upset but didnât let it show too much with me; heâs a tough cookie. My boyfriend was, and has continued to be my rock.

How did your friends react? Were you treated any different?
My friends were all very upset and shocked. Most of the time I felt that I was the one comforting them. I was also the one who did most of the explaining, since they, of course, had many questions. Later on, I wasnât treated any differently by my close friends, except for the fact that they wanted to lend a hand in taking care of me. Strangers or acquaintances definitely treated me differently. During chemo it felt like I was the car crash that they wanted to look at but felt the need to turn their heads at the same time.

What did your treatment consist of?
I started Taxotere (chemo), Herceptin, and Avastin (research trial), in September 2008, and it continued until the end of January 2009. As soon as chemo started, I became a fighter. I had a fire inside and will to live like never before. I ignored statistics that said I wouldnât live, and stopped reading things about people with the same disease who died. I focused only on the positive, while acknowledging that there was a dark side. I had only a few days were the dark side took over, but I found a way to pick myself up, dust myself off, and fight some more. My hubby was a huge part of that. I went to the hospital for these treatments every three weeks for a whole day. I was really lucky and most felt fine, except that I had a major loss of energy. I continued to go to the gym or take a walk until around January. I also continued to look relatively normal until then. I look back at photos now, and am shocked at how terrible I really looked. Hair loss didnât bother me too much (once I shaved my head), but the loss of color in my face and the yellow/brown around my eyes were hard to look at.

In which Hospital(s) were you treated?
HÃ´pital Saint-Sacrament in Sainte-Foy, Quebec City.

What is your current medical status?
I continue to go to the hospital every three weeks for Herceptin and Avastin, and I am now in remission. There appears to be no cancer in the breast, and there are 2 small tumors in my liver.

How is life different for you now post diagnosis (physically, emotionally, socially,spiritually)?
Now, Iâm weak physically, and Iâm working on building up my strength. Iâm much more relaxed than ever before, probably because Iâve learned that the stuff I used to stress about really isnât that important. I pay more attention to and appreciate many things in life on a whole new level. I learned that it was important to appreciate today, and to do things now that I can do now, which is why my husband and I got married in November 2008. Iâm finding it a little hard to explain to people I havenât seen in a long time why my hair is so short and why Iâm smaller. I donât shy away from them, but itâs awkward at times. Now, Iâm focusing on the future, and trying to figure out how to live the most meaningful life possible.

What was the toughest part of your challenge?
Accepting the fact that this disease is a part of my life, forever. I used to think it would be like a bad flu; Iâd be in rough shape, get treatment, get better, and carry on with a vague memory of being out of commission for a while. The harsh reality is that it will always be there, as a living reality or a vivid memory.

What was the best part about having your challenge?
The beautiful reality is that Iâve been changed in positive ways that I never would have if werenât for this disease. I often say that itâs like a veil has been lifted from my eyes (I think I read that somewhere and identified with it immediately). Iâm living in the now, and appreciating every single moment of every day. Iâve slowed down, and I stress less.

What really motivated you to keep going while you were/are sick?
Not dying. Iâm too young to die now! This disease will not take me before Iâm ready to go. Living a long happy life with my new hubby motivated me. I didnât get married so I could go off and croak.

What lessons or messages have you taken away from your experience?
Besides the above, take care of your body! I had no idea how the things I was putting in, on and around my body were so harmful. Or how the things I was NOT putting in, on and around my body could have helped me. Above all, live in the present.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Before, I was afraid of it and prayed that something I or the doctors were doing would make it go away. Iâm angry at it now. I want it to go away, and Iâm figuring out new ways to have more control than it does, or at least feel like I do.

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?
Eat plants. Eat legumes. Drink lots of water. Use natural products on your body and in your house. Booze less. Exercise more.

Did you attend any support groups during your challenge? No, but I did a course in art therapy for women with breast cancer.

What was it like? It was awesome, but I felt like a baby. The women are my motherâs age.

If you did not attend a support group, why?-Would you if one had been available? -Do you think attending one would have helped you?
Yes! If there was something for young Anglophone women, absolutely.

How are you connected with Young Adult Cancer Canada?
I found you on the internet, and discovered that Geoff is my cousinâs friend, so I came in to meet him on my visit home.

What are your thoughts/feelings on Young Adult Cancer Canada?
Finally! A place involving people like me.

Victoria David

2009-04-27T14:29:28Z

Hometown: Montreal, Quebec

What school do you attend? McGill University, and University of Oxford

Do you work? No. Currently a student

What is your career goal? Water Policy Advisor

How did you find out you were sick? What event(s) led to the diagnosis?
I found a lump in my right breast and didnât really think much of it. A few weeks later, I had a doctorâs appointment for something completely unrelated but decided to mention it. She referred me for a biopsy but insisted that given my age it was probably nothing. The biopsy was scheduled for 2 months later. âNothingâ turned out to be cancer.

What year was it? What was your age at the time?
It was in 2008, 2 days after my 27th birthday.

At what level of education were you at diagnosis?
Graduate Student (masterâs). I had to suspend my degree as I was studying in the UK. I returned to Canada for treatment. I am currently back in the UK wrapping up my degree.

What was your diagnosis?
Stage 2 breast cancer

What were your first thoughts when diagnosed?
Complete shock and disbelief. I was in for a biopsy and it didnât even cross my mind that it could be cancer. I didnât know what to do or who to tell. I had only been living in the UK for 6 months. I lived in the land of denial for the first few days.

How did your friends react? Were you treated any different?
My friends were shocked. Some pulled away, I think partly because they felt helpless and were scared. Others came through like rock stars. But in the end, most offered support in ways they could manage. Overall, I donât believe I wasnât treated any differently. I think the beginning was the toughest for them because they felt helpless while I waited for more information on the cancer and treatment. I have lived in many places over the previous years, and I had a lot of friends come visit.

What did your treatment consist of?
Medical Side:
My treatment started out with surgery (lumpectomy and axial node dissection). It was followed up with 6 rounds of chemotherapy (TC - taxotere and cyclophosphamide) and capped with 29 radiotherapy sessions. My goal was not to spend a single night in the hospital (mission accomplished).

Surgery was an outpatient procedure, in at 7am, out by 1pm. Ironically; the surgery was scheduled the same day as one of my finals. I had been dreading that day (cause of exams) for a while now, but now I was dreading it for far different reasons. I recovered quite quickly from surgery, and they let me leave within 2 hours of completing the procedure. The main side effects from surgery were regaining mobility in my arm. They had to cut through muscle and nerve to remove the axial lymphnodes. It took about 8 weeks to regain full mobility. At first I was concerned the physio would tear out my stitches, but once I realized they werenât coming out, physio progressed quite well.

Chemotherapy went surprisingly well. I had 6 rounds over 18 weeks. I think the 3 weeks off between each round is what really helped. I had chemo on Thursdays, so the weekend after was usually a write off. My roommate would get drunk the Friday after chemo so he would be painfully hungover on Saturday (just when my steroids would wear off) and then we could face nausea as a team. It was pretty funny. Usually by Monday I would start recovering and by Wednesday (day 7) I would feel 80%. That would leave me 2 weeks off before the next round. Since I dropped out of school to focus on my battle, I would take these 2 weeks off and go running and cycling.

The final part of my treatment is radiotherapy. I had 29 sessions over 6 weeks. They usually lasted 5 minutes, but I would spend about 30-60 minutes in the hospital. The side effects from the radiation were minimal and my skin took it like a champion. It took a while for the skin to heal.

I also had fertility treatment. Since my tumor was estrogen positive, I could not get in-vitro-fertilization (IVF) as you need to take estrogen. I had a procedure called in-vitro-maturation (IVM) when they mature the egg outside the ovary (no estrogen necessary). I did have to take an injection of human chorionic gonadotropin (hcg) â a pregnancy hormone. The actual procedure took 1 hour (under full anesthesia). The procedure is not covered by health care, but since I was a student, a cancer fund through the McGill Reproductive Centre covered the costs. I had the procedure done 2 weeks after surgery, before chemo treatment.

Non-medical side
The hardest part emotionally was the beginning, the unknown. Once the doctors gave me a plan of attack, I knew what I had to do and I felt in control again. I went to the young adult cancer support groups through the Royal Victoria Hospital. I did a lot of running and cycling. I think the running is what got me through chemo. It felt like I was reclaiming my body.

In which Hospital(s) were you treated?
Montreal General Hospital (radiotherapy), Royal Victoria Hospital (surgery, chemo, fertility)

What is your current medical status?
Healthy!

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Emotionally/Socially:
My primary life goal now is to have fun. I used to be an overachiever, but now, I focus on having fun and just achieving. For instance, last year when I was in the UK for school, I would study every weekend. This year, Iâve been hiking in the Lake District, snowboarding in the Italian Alps, and biking from Belgium to Netherlands. My grades might suffer, but I have way more fun, better pics and better stories.

Physically:
I used to be quite active. I was training for a triathlon prior to being diagnosed, and I will actually be competing in my first tri next month in London. So not much has changed on that front. I donât really drink anymore. Iâve had enough nausea for a lifetime thank you.

What was the toughest part of your challenge?
The unknown, and the mental game. There is a ton of support for the physical treatment, but a significant gap for the emotional support. Being a young adult going through cancer is hard because you are shifted into a world where your future is uncertain. If you are much older, you have lived. As a young adult, you have to contend with the idea you may never get married, have kids, graduate, etc. Getting medical advice from peopleâs whose names were not followed with MD. Granted this wasnât the toughest, but perhaps the most annoying. I was advised by certain people: not to have surgery, not to go through with chemo, not to return to the UK because the cancer might come back, etc. Frankly, the toughest part was not calling them a bunch of *&!$ing idiots. They all had cancer, so I tried to be niceâ¦

What was the best part about having your challenge?
Winning. A new appreciation for life.

What really motivated you to keep going while you were sick?
Running. I think it was my way of saying âscrew youâ to cancer. I would run 5km at least 2-3 times a week during the second and third weeks following chemo. I ran a 5km towards the end of chemo to raise money for breast cancer. Part of me felt that cancer had taken control of my body and running during treatment was taking back control of my body. My friends were really helpful as well.

What lessons or messages have you taken away from your experience?
Have fun, because you never know what may happen. Be honest with yourself and others. Donât play a role you were given, do what you want. And screw what people may think.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I was terrified of treatment and I really thought chemo was going to destroy me. But in the end, the treatment wasnât that bad. I spent a majority of chemo feeling above 80%. It was nice since it was the first time in a long time where I had down time. I have learned many lessons from my illness. Honestly, if I had the choice, I would prefer not to have gone through it. But seeing as that isnât an option, I try to find the positives in it. What doesnât kill you makes you stronger. And I truly believe that. I am a better person than I was before.

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?
Be aware of your body. Donât discount potential illnesses because of your age. Get things checked out with your doctor.

Did you attend any support groups during your challenge?
Yes. I attended the Young Adults Group at the Royal Victoria Hospital.

Did you find it helped?
I found it was nice to meet other people my age going through it. I connected with some. However, I also met some that would try and dispense me medical advice. I found this frustrating.

How are you connected with Young Adult Cancer Canada? What are your thoughts/feelings on Young Adult Cancer Canada?
Karine used to co-facilitate the young adult support group at the Royal Victoria Hospital. She now works for YACC.

I think itâs a great organization. I think there are so many young adults across Canada, and YACC is a great medium to help them connect.

Darci Instance

2009-03-23T16:30:33Z

Age: 21

Hometown: Winnipeg, Manitoba

What school have you attended? Sisler High School, University of Winnipeg

What is your career goal? To be an elementary school teacher

How did you find out you were sick? What led to the diagnosis?
When I was 17 I found I would go on the ice (I play a lot of hockey) and get sick, nothing else triggered it, just hockey. My doctor did a blood test, it came back my hemoglobin was dropping rapidly, she thought internal bleeding. She sent me to emergency where they did an immediate cat scan and they found a mass that was overtaking my abdomen, it was 11 pounds!! (No it didnât show) When I was 19 it returned, they took out a small tumor as well as an ovary, I had ovarian cancer as well. I got out of the hospital on my 20th birthday.

What year was it? What was your age at the time?
It was 2006 and I was 17 the second time I was 19 (20 in a couple of weeks) and it was 2008.

At what level of education were you at diagnosis?
Finishing grade 12, I went to grad bald and the second time, the end of my first year at university.

What was your diagnosis?
Initially Sarcoma, when it was out they classed it as a malignant neoplasm in the peritoneum, its still being tested around the world.

What were your first thoughts when diagnosed?
My graduation. I had been growing my hair for 3 years just for grad. I also asked that my dad flew in, he was living in Calgary at the time and he made it, by the evening he was in town.

How did your family react?
They were shocked, Iâm so athletic and the whole time I had this in me. They were scared naturally I am the youngest in our family and they didnât want me to have to go through this.

How did your friends react? Were you treated any different?
My friends were amazing, they stood by me through everything and I mean I wore a hat at school but I think they all still treated me the same for the most part.

What did your treatment consist of?
I started with a major surgery that they werenât even sure they could do because of the placement of the tumor; it was attached to my large intestine and behind my aorta. When I recovered from the surgery I began chemo therapy, 6 sessions every 28 days. My second time, I started with surgery again, they removed a small tumor and an ovary and I began the same chemo schedule as well as 25 radiations everyday. I did this all on an out patient basis although I was neutropenic so when my blood counts would go to zero, I was quarantined in our Childrenâs hospital for a week or so.

Physically, I did play hockey through everything, and in the summer I worked right through it all as well. I didnât let it control my life and it didnât. I still am playing hockey and have been since September and have only finished my chemotherapy on October 31 of this year (2009).

In which hospitals were you treated?
Health Sciences Center, Childrenâs and Adultâs. As well as the Womanâs Hospital

What is your current medical status?
Iâm just going through testing right now for pains in my abdomen but other than that Iâm top notch!

How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
I am definitely not where I was physically, I donât workout like Iâd like to or play hockey at the level I used to. Emotionally, I am changed, doing chemotherapy with those children, some babies, some as young as 2 or even 10 or 11, those kids donât deserve to be there. They taught me a lot, to be less selfish, now instead of planning my 40th birthday party Iâm grateful I had a sweet 16, an 18th, soon to be a 21st, Iâm grateful to have gotten my license, graduated high school and been accepted into the faculty of education my first try.

What was the toughest part of your challenge?
Losing that ovary and all the chemotherapy make me very nervous that Iâm infertile.

What was the best part about having your challenge?
Getting this new frame of thought, although Iâm still spoiled and enjoy it, I know how great my life is and am grateful for all Iâve seen.

What really motivated/motivates you to keep going while you were sick?
Hockey, I live to play and seeing my team every September is always exciting.

What lessons or messages have you taken away from your experience?
Always be grateful for living a day in your life, their precious.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Having gone through this twice I now think Iâm invincible, if I find out I have it again, oh well, start the cycle all over. What are you going to do; crying doesnât make it go away.

What are some preventative measures that people can take to lower their risk of having an experience like yours?
I think, other than the obvious, just live your life, do I still eat junk- yes, do I still go tanning when Iâm on the ocean-yes, I mean like I said before it wont run my life. Iâm 21 years old.

Did you attend any support groups during your challenge?
No but I wish I had.

If you did not attend a support group, why? Would you if one had been available?
One was available however I just recently found it and will be attending it for now on.

Do you think attending one would have helped you?
Probably, no one understands unless theyâve been there.

How are you connected with Young Adult Cancer Canada?
A social worker informed me of it.