A little bit about you:

Name: Paula Veinotte-Nickerson

Age: 34

City: Upper Rawdon, NS

What was/is your diagnosis?
Papillary thyroid carcinoma metastatic

What year was it?
2016

What was your age at the time?
33

What is something you’ve done that you’re really proud of?
I am more proud of myself now always trying put myself first doing what I love and living to the fullest.

I climbed Cape Split this past fall. One off the bucket list!

What is a top item on your life to do list?
Strive for being healthy (eating well & exercise) and can’t wait to get to the next item on the bucket list!

What are your hobbies?
Hobby farm; gardening; crafts; thrift shopping; spending time with my puppies (all four of them); music and dancing; walking and jogging; hiking, swimming (I love the ocean); collecting shells, beach glass, sand, coins, sticks, and rocks — just about anything that makes me smile!

 

Your diagnosis:

What was your life like before your diagnosis?
I was a busy mom of three boys, a loving wife of 12 years, homemaker, and I was running my own personal cleaning business, and taking no medication. I was enjoying life, I had everything I needed. I started studying to learn nutrition. I was planning events in my life for summer.

How did you find out you were sick? What led to your diagnosis?
I had already planned to go to PEI with the kids and my mother-in-law before the end of the summer. I wasn’t feeling so well on and off over the past four years; every time I went to my GP, they would do up the blood work, tell me I had low iron, and send me on my way with supplements.

The last time, I had this damn swollen lump just below my jaw line. It was starting to become noticeable to people who saw me all the time. My body just didn’t feel right. I was really starting to drag ass, getting irritated at the little things, and started feeling like something had been stuck in my throat. When I noticed the left side of my neck starting to swell, I thought my lymph nodes were swollen because I had a cold, but it didn’t go away so I went to get checked.

I couldn’t get an appointment until after I was gone on vacation, but I didn’t want to wait, so off I went to the walk-in clinic. They sent me for blood work and sent off a requisition to have an ultrasound when I got back from PEI.

I went for the ultrasound and called the clinic the moment I left the hospital as the doctor requested. I wasn’t even half way home and she called me to come to the office right away. My bloodwork came back normal, but the ultrasound was alarming. The doctor told me she was calling my GP and faxing over the results, explained to me what it might be, and said “honey, everything will be okay!’’

My GP quickly scheduled me to see an ENT at Victoria General Hospital in Halifax, NS for a fine needle aspiration. When the results came in, I was terrified. The biopsies came back inconclusive. My surgeon decided the best thing to do was to open me up to see what was there and remove what was bothering me. During my first surgery, they removed my lymph nodes from the left side of my neck and biopsied a mass they saw on my thyroid. On my son’s 10^th birthday, I went back to my surgeon for the check up and results where I was informed I had thyroid cancer and we needed to remove the thyroid. I had this surgery two months later.

What were your first thoughts when diagnosed?
Right after my surgery, I spent four days in hospital. On the day before I was able to leave, my husband, Matthew, was in a serious car accident which ultimately left him with no sight in his left eye and a reconstructed face. My first thoughts were, “Great, no Christmas at our house. What are we going to do for money and food? How are we going to do this!”

It was an emotional roller coaster. I now had to parent three boys (a teenager and two youths) and care for my husband. At this time, we had no clue about the long term effects of his injuries or his recovery time, and I was only two weeks out of surgery. I was supposed to be recovering and taking it easy. In addition to the surgery, I would be isolated from my family for radioactive iodine treatment and would be on medication for the rest of my life. My mind was racing; I was ready to just lose it! It took all my strength and energy to keep everything in to wait for a new day to discuss it.

In which hospitals were you treated?
QE II Victoria General in Halifax.

What did your treatment consist of?
I had two surgeries within two months (the left neck dissection in November 2016 and the second to remove my thyroid in January 2017). Both came with a four-day hospital stay, medication for the rest of my life, eight days as an outpatient, isolation due to radioactive iodine, and plans be followed by my oncologist for the next 10 years!

When my lymph nodes were removed, I’m not sure my body or mind reacted the way it should have as I was more worried about my husband. My emotions were taking a toll on me, and all everyone kept saying was, “Now you need to be stronger than you ever have. You’re not just fighting a battle by yourself, but you have to care for Matthew, too!” This was a very big struggle for me. I spent the next four days on the side of Matt’s bed.

Each day was different. I was physically and emotionally drained. It was like I was outside of my body and not understanding why.

We got to go home for three days then headed back to the hospital to reconstruct his face. He was taken in at 7 a.m. for surgery, and I spent the rest of the day pacing the halls, trying to catch a nap here and there. My neck was trying to heal and my body was fighting. I was running on pure adrenaline. At 10 p.m. that evening, I finally got the call that Matt was in recovery. My heart started racing as the surgeon sat down and told me bit by bit about the procedure. After picking and flushing the tiny bits of bone, he was able to reconstruct Matt’s face with a piece of bone from his hip, eight titanium plates, and 14 wires. We spent four more days in the hospital before we went home!

My iPhone’s notepad became my best buddy for pictures, sayings, quotes, notes to myself, anything doctors said, as a place to spill my guts whenever I needed without actually having to talk to a human. I became very isolated and wasn’t able to leave my home. I had to get rid of my farm animals, throw a party for my 10-year-old, and try to have a Christmas.

Emotions were running high. I was crying one moment and mad the next. I would nap several times a day. We had people helping clean our home, drive us to appointments, take on some medical care, cook for us, and even take our children to activities. It was like throwing a deck of cards on the floor and having to pick them all up again. Everything felt as if it was out of my control.

By January 2017, my husband started coming around and I didn’t need to be his 24/7 nurse. He still needed me, but so did everyone else. I needed time for me. I was getting a cold; the headaches were so uncomfortable, I was freezing all the time, and I was losing weight incredibly. It was time to have another birthday party for my 11-year-old, and I knew I couldn’t do it alone at my home. As horrible as I felt, with my mother-in-law’s help, I took six kids to the movies. It turned out great.

We were also getting closer to my second surgery. As the month rolled on, each day went by slowly.

My entry from my notes before my second surgery:

Please let me have my mood swings. Let me wake up cranky. Let me fall asleep at 1 a.m. Let me take a small nap when I’m tired. Let me stay quiet as we walk. Let me look outside the window as you drive in silence with you asking if I’m okay. Let me get overworked without making fun of me. Let me just….let me be me. I know what’s wrong with me. I’m trying to hold so much back. I need someone to trust me and not always remind me. I just want to process this. I will be okay! I will make it through this!

After my surgery to remove my thyroid there was another entry:

I’m not ready yet. It’s hard to explain!

I’m not ready to go on with life just yet. I’m still trying to figure out the new me. Not ready to pick up the pieces and carry on as if nothing is wrong. I’m just not ready. 

I’m not ready to hold back the tears or push down the anger. I can barely breathe at this point and need to take one step at a time. The last couple of months have been so much and the processing is a big part everything. I’m just not ready. Yet!

I’m not ready to go on living and pretending I am strong and able to carry on. I’m not. I’m lost without words. Feel like I’m stuck in a glass box looking down on everyone. It’s so challenging and I’m just not ready. 

I’m not ready to be so forgiving and understanding. I’m ready for all this pain and suffering to stop! I’m tired. I’m afraid to let go of anything anymore. And I don’t want to accept anything new.

I’m not ready to smile again. Not ready to be strong again. Not ready to laugh again. Not ready to accept that a huge part of my life is missing. Not willing to accept that yet. So please forgive me. I just can’t bounce up that quickly this time. I can’t even talk to anyone.  

During my second hospital stay, Matt never left my side. We spent four days in the hospital and then returned home.

On top of recovery from a surgery that changed life as I knew it, I had a sinus cold and was trying to fight it off. My throat was hoarse and my body was hurting. I had to sleep propped up on the couch and I was tired all of the time. I was glad it was winter because that meant nothing much had to be done outside.

I grabbed a pamphlet from a lady at the hospital who said, “Here, this is something that might interest you.” it was a pamphlet for YACC! I decided to email, and it was the best decision I have ever made. From that day forward, I had a support group that actually understood the challenges I was facing.

My radioactive iodine treatment consisted of two Thyrogen injections, one on Saturday morning and one on Sunday morning. On Monday, we were off to the hospital for blood work and then my radioactive iodine.

When I became radioactive, my nurse walked me out of the hospital so I didn’t touch anything. My husband (and chauffeur) Matt was waiting at the front doors of the hospital with the car. I had to sit in the back. We stopped so I could get a special smoothie (yes, I was spoiled). When we got back home, I spent the next week in our camper trailer watching movies, sleeping, and talking to my husband while he sat outside. Each day was sunny, so I was able to go outside and enjoy the free vitamin D.

I listened to a lot of music, cooked for myself, and had my own schedule. I found it hard to sleep on my own the first couple of days –I would cry myself to sleep — but it did get easier. I was very emotional at this time. Matt worked each day when I was in isolation and my children were home, so they were taking care of the farm as we still had laying hens and our dogs. The kids felt like they we on vacation by themselves as they were able to run the house, glad it was summer. After a week of isolation, we headed back to the hospital for a full body scan, and then went back to life as we now knew it.

What is your current medical status?
I am kind of excited. I had my first GP appointment last week (November 2017), and my Synthroid didn’t have to go up! Yay!

I do currently still have muscle tension headaches from my surgery. My GP and I are testing and trying to see what else may help. With everything that has happened over the past year, my emotional state took over, and I finally stood up and told the doctor how I was feeling. We agreed I should go on an antidepressant. I ended up getting GERD after my thyroid was removed, so I’m on another medication for that as well.

I’m currently waiting on a check up appointment to determine my cancer status. I have had to go for multiple blood work requisitions, an MRI of my pelvis due to abnormal pain and bleeding, x-rays of my lower back due to consistent lumbar pain and SI Joints, a CT scan of my head to explore the cause of the head aches, and a mammogram and ultrasound of my left breast due to a lump and a biopsy.

So currently I call it limbo! I’m taking my medical status one second, one minute, one hour of every day, step by step.

 

Life after cancer:

How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
Everything changed. People were different. Some people pushed away and some got to close. I had an actual support system, and while they were there, things seemed to help. Now people have stepped back, moved on, and really don’t like to talk about my cancer. They all remember Matt’s accident and I think feeling alone even when your family is close is really hard.

I went back to cleaning houses and felt that I was putting too much strain on my body. I decided I should get a different career, so I took the food handlers’ course and took a position at a restaurant for September 2017. Well, the restaurant still is not open; it’s now November 2017 and the boss offered me a position at his Robin’s donut location. I accepted, but I didn’t know my body was not ready to stand on cement floors for eight hours a day.

My GP sent me for x-rays since I was physically drained and my lower back was giving me major pains and I was unable to do my job. I was on my couch for a week; my back never allowed me to get things done around home.

My emotional state has its ups and downs, but we are working on that. I’m still a bit lost from time to time, daydreaming I call it. Brain fog sucks ass. If I haven’t set a reminder for something on my phone and written it down three different times, I’m not sure I would remember it. I tell myself if I forget, it will get done, just maybe not at the right time, and I’m okay with that. I have to be or I would drive myself nuts. I try to look at things in a different light now. I have gone back to cleaning once a week and that’s just to get me out of the house so I don’t go nuts.

Seriously, I am trying and that’s all I can do right now. One foot in front of the other.

I have made connections through YACC and I also went ahead and created a Facebook page called Young Adult Cancer NS. We have gone on a few outings and they have been great. I am hoping this grows and looking forward to seeing where it takes me. I know it may sound crazy sometimes, but it’s just feels right.

What is/was the toughest part about having cancer as a young adult?
Facing it alone in the beginning. The not knowing if I would see my children’s birthdays, Christmas concerts, graduations, weddings, or kids. Telling everyone in my family what’s going on each step of the way. People telling me, “Oh you look so good, you must be feeling much better.” The struggle of not being able to do what I did before. The brain fog and forgetfulness. Being scared that I might have a reoccurrence.

What really keeps you going?
My children and husband are what keep me going, as well as my dogs (two Great Pyrenees, one Shih Tzu, and a Multi-Poo!)

How are you connected with Young Adult Cancer Canada? How did it happen?
I was handed a pamphlet at the hospital by a young lady. I was scared to reach out at first. I took a baby step and emailed, which was when I connected with Lesley, the community engagement manager. She welcomed me instantly. I was then connected to the YACC world, a world I never knew and never even thought about before until now when I just needed to feel normal, whatever that may have been.

Lesley told me about YACC’s Survivor Conference that was coming up in June 2017 and asked if I wanted to attend. I was so terrified at first and knew I didn’t have the funds to do this since we were just starting to get back on our feet. She insisted and said, “Paula, we want you here and we can help you. That’s what we do.” My heart soared, my body become fuzzy and warm, and I knew I had to go, just to try it. I agreed and ended up in Newfoundland in June. I had never been to Newfoundland and I was so nervous, but I was welcomed with open arms and met so many people. I instantly felt something I have never felt before, and I’m blessed every day to now know I found a whole new family.

 

The issues:

Did you feel isolated from your peers after your diagnosis?
It wasn’t the feeling of isolation, it was how everyone either cared too much, over doing it, while also putting distance in our conversations. With some, the big “c” word was hardly talked about, it was like secret garden!

I really didn’t find a connection in my area until after I attended my first Survivor Conference. That’s when things really started to hit home as I really didn’t talk about myself when I was home. With so much going on, I felt it was a touchy subject. I opened up in group, I met some new friends, and I actually felt comfortable about who I was and what was happening to me.

Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
The diagnosis affected a few of my family members who have actually pulled away, and I haven’t spoken to them in years — well, not without a screaming match!

If you have children, how has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
When I was first diagnosed, we knew it had spread to my lymph nodes and we just had one more surgery to go. After that surgery, I tried to be as closely involved as I could be with my kids and husband, but each day got harder as exhaustion was catching up with me. People would say, “You must have a lot of patience.” Not really, I was ready to snap!

My eldest son has disabilities, and he uses them at my lowest points to be able to get what he wants. I remind the kids to write things down or it won’t be remembered. I have the most horrible brain fog and it makes me feel stupid because I’m not always able to help my kids with what they need or remember they have somewhere to be. Parenting is very difficult after losing my thyroid.

Tips for other parents: talk to your children, hold them close, let them know it’s okay to be scared, let them know it’s okay to cry, tell them they can ask any question they need to, just be there for them.

How has your cancer experience affected your body image, and your relationship to your body?
Well let me tell you now, I am a lady who always had absolutely no boobs, and BOOM! I got some! Haha! I did put on 20 lbs and then lost 10 lbs walking all summer. I am happy with the way I look. My scar is my reminder that I’m still here, and that’s all that matters.

What are some lifestyle changes you’ve made since your diagnosis?
I cut way back on my sugar intake, I eat healthier foods, and I exercise. I have started getting out of the house more and meeting new people, trying new things. I’M LIVING!

 

Resources and recommendations:

What would you add to a treatment-day playlist?
“World Is Dancing” by Coco Jones

“The Fighter” by Keith Urban

Which books/movies/podcasts/TV shows/etc. would you recommend?
You’ll Get Through This by Max Lucado

Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?

I attend Survivor Conference 2017 in Newfoundland and started a Facebook group for Young Adults with Cancer in Nova Scotia https://m.facebook.com/groups/1948475982065848

Are there any other resources you’d like to recommend?
Sign up at Cancercare.ns.ca

 

Stay in touch:

What would you like to say to other young adults dealing with cancer who are reading this profile?
YACC is amazing and it may scare the crap out of you to go, but you won’t regret it in the end. You’ll have new friends far and wide, and you’ll meet people from where you live who you wouldn’t have even known before. You will find people who can relate to you. Don’t be scared to reach out; I did, and it’s the best thing I ever done.

Are you interested in helping others facing cancer challenges?
Yes I am.

(If you would like to get in touch with Paula, email [email protected] and we will forward your message to her.)