Susan Jones

Susan_Jones - profileHometown: 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 mother’s side of the family), I wasn’t worried but I went to see a walk-in clinic doctor (I didn’t have a family doctor) and I was very calm, confident and blas about it. Even the doctor didn’t 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 wasn’t 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 Hmmm.. malignant  benign.. Benign = the good one and malignant = the cancerous one. Did she really say malignant? No, no, no… she must have meant benign.   She continued on to say that it was breast cancer. That was the defining moment when it all hit, and that’s  when I went numb (and a little deaf).  I just remember feeling winded, like being kicked in my stomach and I couldn’t breathe. I had tears streaming down my face, but I couldn’t cry I was in so much shock.  I had trouble getting the words out..  what do I do now? What happens?

How DO you deal with being diagnosed with cancer? What do you do?

What do I do now? 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: Holy crap, holy crap, holy crap! This can’t be holy crap, holy f*cking crap.  Then my thoughts turned to how come I see the doctor’s lips move but I can’t hear what she’s saying? I think I’m in shock .

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 mother my baby sister is going to die too 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 couldn’t (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, weren’t true friends.  They were drinking buddies or fair weather friends and they either just quietly walked away or I eventually stopped contacting them since they couldn’t 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 gifts  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 good somewhere.  Slowly out of nowhere, other people, some complete strangers, and others whom I hadn’t 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 wouldn’t 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 weren’t 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 couldn’t 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 boom! 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 the fear take over my present life (and it’s a hard one not to become neurotic every time I get a cold or have a health issue). For the most part, I’m 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 me along the way.  I still have the same core values as I did before, but I’m 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 life 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 didn’t feel that I could connect with the issues of the older women who were already menopausal or were grandmothers, so I didn’t 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 it’s 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 I’m not comfortable speaking in a group setting. It’s way out of my comfort zone but it’s 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 it’s 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.