Andrea Whittle - Survivor

Andrea Whittle

Andrea Whittle


Andrea Whittle

A little bit about you:

Name: Andrea Whittle

Age: 33

Hometown: Winnipeg, MB

Diagnosis:
Grade ⅔ Invasive Ductal Carcinoma
Progesterone and Estrogen receptor protein positive
HER2 positive
100% recurrence rate

What year was it? What was your age at the time?
I was diagnosed on November 3, 2015 and I was 30-years-old.

What is something you’ve done that you are really proud of?
I am extremely proud of myself for handling every shitty thing that has ever happened to me in my life with grace and positivity.

What is a top item on your life to-do list?
To open an after cancer centre in every capital city in Canada for all ages of Canadians living with—or after—cancer. A place for cancer patients and supporters to come and receive group/ personal counselling, yoga, art, movies, games, music, hold events, etc. A place for connecting and peace.

What are your hobbies?
I enjoy drawing and painting; I’m very crafty! I love being in the peace of nature, I discovered in an art therapy class that being in nature is my “happy place.”

 

Your diagnosis:

What was your life like before your diagnosis?
Before I was diagnosed, I was a full-time clothing retail store Manager for over 17 years. I was a mother of a 5-year-old son, a loving fiancée, and caring friend.

I have been supporting myself since the age of 18, I’ve always been independent and loved working, and making a difference in strangers’ lives. Bringing a smile to someone who’s having a bad day brings me immense joy.

I had been saving to buy a house. I was less than a year away from making my dreams come true.

How did you find out you were sick? What led to your diagnosis?
Mid-June, I was doings crunches one night before bed when my cat Dez (personal trainer) decided to help by walking and sitting on me. He stepped on my right breast as he sauntered away. Oooh, did that hurt!

A few days go by and my breast is still sore. I give it a massage and felt a lump. I thought, “Naaaaaaaa, it’s nothing. I don’t got time for this shit!” Work was very busy with getting ready for the back to school launch.

A few months pass and I’m camping with my friend for a week. She tells me about her grandma who was just diagnosed with breast cancer, which made me remember I had a lump. That night, I felt it again, and that one lump was bigger. And I felt two others beside it.

When I returned from the trip, I called around to clinics as I didn’t have a family doctor. I ended up having to do a self-referral to the Breast Health Centre. I went for my first appointment and met a nurse. She didn’t seem too concerned and said it was probably “period cysts. You’re too young for cancer.” She referred me to get an ultrasound with biopsy, which I had a few weeks later.

One week after my biopsy and ultrasound, I had my results. I went to that appointment alone, as I’ve always done. I didn’t tell anyone except my partner, boss, and best friend.

The doctor came in and asked if I had someone in the waiting area. That’s the first thing she said after she introduced herself and the student hiding behind her. I casually said, “NOPE, everyone kept saying I’m too young for cancer, so what’s the results then, I got cancer?” She said just as calmly, “Yes but don’t worry, we have lots of options. I’m going to send you downstairs for a mammogram and then we will discuss the action plan.”

After the mammogram, she showed me the image of my chest and said, “This is your left breast—clear and normal. Now here is your right.” I saw five tumours and what looked like the inside of a shaken up snow globe. The doctor said the “snow” was all cancer, and that meant our options were limited. I look at her and the radiologist and said quite loudly, “What the fuck does that mean?!” I still see the look on their faces today! LOL. I was scooted out real quick and into a private room where I spent the next seven hours.

The very next day, I met with my plastic surgeon to go over my double mastectomy options. Two weeks after that appointment, on November 24, 2015, I checked in to the health science centre and had a 10-hour surgery—a double mastectomy with bilateral DIEP reconstruction with the right sentinel lymph node removed. They used my stomach fat to fill my breast, instead of using implants. I clotted three times during surgery and was very lucky to have survived. My doctor said it was pretty scary at times.

I started chemo one month later. I had five different chemotherapies. The first three cycles were every three weeks. I did three chemos per visit, which took 6-8 hours. The next three cycles every three weeks was a nasty-ass bitch chemo called docetaxel and the start if Herceptin. I had to do 18 cycles of Herceptin, which took over a year.

A month after the last docetaxel, I started radiation for 28 straight days, Monday-Friday. A month after radiation was complete, I had an oophorectomy.

In November 2016, I was diagnosed with congestive heart failure. My heart was only pumping out blood at the 35 per cent range. That was incredibly scary as they also noticed something on my left ventral that looked like a tumour. After having a MRI of the heart, it was determined the tumour was just a shadow, but confirmed the heart failure. I had to quit the Herceptin because that’s what was killing my heart. After six months, my heart improved to pumping out at 57 per cent range.

On August 24, 2017, I had another surgery on my breasts to fix the damage done from radiation, and to lower my stomach scar.

The recovery from the double mastectomy was incredibly painful. I really didn’t know what the surgery consisted of or what the recovery would be like! I was told by the plastic surgeon, but I was still in so much shock from being diagnosed and everything was happening soooooo fast, I didn’t have time to really prepare myself for what was about to happen.

I developed a seroma after surgery, which was an empty pocket under my stomach scar that kept filling with fluid. I had to get it drained with a needle every two weeks for over three months. This area also developed a hernia which has been incredibly debilitating and affects my daily life still.

I did research recently by reading my pathology notes from surgeries and communication messages between my plastic surgeon and my cancer surgeon. These “side effects” are actually complications from being a smoker. I was apparently told my complication rate was 100 per cent for having these issues and also a total loss of my flap (my stomach skin which filled the hole of where my nipples were. I like to call them ghost eyes). I was a smoker for 17 years and quit cold turkey two days after I was diagnosed. This surgery is normally done after at least six months after someone quits smoking due to the high risk of complications.

Treatment
I was scared shitless of chemotherapy; I was more worried about that then having surgeries or radiation. Again, I had just five days to prepare between meeting my oncologist and starting my first cycle on January 4, 2016.

Chemo was just as scary as I thought. The only way for me to describe it as the flu x1000. It took away all my energy, and it was very difficult to do anything. I just had to close my eyes and let the day go by to the next. Water tasted like ass, so I drank Vitamin Water and Powerade through the rough weeks. Meat gave me energy.

Every cycle got more intense, and took a week longer than the last to recover. I caught a cold a week after every chemo. I got an eye infection after the second cycle. After the third cycle, I had a viral infection. For the fourth, fifth, and sixth cycles, I had shingles the entire time. The shingles started as three little itchy spots that blew up within six hours to the entire left side of my chest and neck. It continued to spread after each cycle, up to my face, to my cheek, nose, eyes, and scalp. It even travelled to a few random spots on my left butt cheek and leg! Shingles pain is no joke. There are no words to truly describe it, and it’s right up there with chemo-level fucked-up-ness!

Cycle five got pushed back one week due to my shingles, and I got to enjoy that cycle on my 31st birthday.

Shingles was what broke my spirit and brought me to tears in front of my oncologist for the first time. That appointment was when I was asked if I’d like to see a counsellor. Shingles is caused by major stress and a weakened immune system. I was financially stressed to the max.

I was denied work benefits just two days shy of working six months which would have qualified me for disability benefits. E.I. disability is only 15 weeks long. The company I worked for filed for bankruptcy, so there was no job for me to go back to. CPP disability denied me because they thought I could go back to work in the foreseeable future, even though I was in the middle of chemo and knew I still had over a year until I could think about the possibility of work. I had close to $17,000 in savings for my future house.

If I didn’t have that money, I would have been homeless six months into cancer treatment. All my hard work toward getting a home was washed away like the rain down the drain. Just gone. In the stacks of information you get when you’re diagnosed, there isn’t anything about financial help. I had no idea what to do, or even who to call.

When I started radiation, I still had shingles, but because it wasn’t on the right side, it didn’t interfere with the radiation lasers. Radiation felt like cake walk compared to the last eight months. They targeted seven spots. The last four days were two high-concentrated beams in one spot. I had two out of four lymph nodes in the tail of my breast that had grade 3 cancer calls. One node exploded on the chest wall.

Radiation made me VERY tired and eventually the burn was pretty intense. I had to wear a binder (white belt) across my chest to hold my boobs down so the radiation didn’t mangle, misshape, or lift my right breast. I had to wear that binder 24/7. It was very painful on the burns, and caused a hole in the skin under my armpit, so the binder was not allowed anymore. Yes, my right breast is a bit mangled now compared to the left.

Hormones are different for young adults with cancer
When my ovaries were removed, I was permanently in menopause and started the hormone therapy. My mental health rapidly declined. I had a lot of anger. I got upset very easily.

The turning point for me with seeking help for my mental health happened one morning when I was walking my son to school. I tripped over a small tree branch and I was sooo mad. My blood pressure went haywire, and I was blackout-rage-mad internally. An hour later, I was coming home from the morning walk I used to take after dropping my son off at school and I realized I was still incredibly angry, but couldn’t remember why! I thought back, and remembered it all steamed from that damn branch I tripped over.

The first counsellor I called didn’t call me back until weeks after I left her a voicemail, and she told me she was too busy and couldn’t see me for a few months! I just hung up on her. I spent the next six months with blackout rage, strong raw feelings of depression, and brain fog galore.

My nurse personally contacted the cancer care psychology department and got me in to see a different counsellor later that week whom I then saw every three weeks for a few months. She got me in touch with some programs offered by Cancer Care Manitoba. I joined yoga, healthy living (exercise/food program), and expressive art.

When the expressive arts group started, I was freshly diagnosed with congestive heart failure. This group was for two hours every Tuesday morning for eight weeks. This was the perfect place for me; I learned how to meditate and find my “happy place.” I started to draw at home and paint to help me stay as calm as possible while my heart slowly recovered.

I also started taking medication to help stabilize my mood, hot flashes, and depression. It helped with mood and depression, but I was dosed to the fullest in order to be “happy.” I experience around 46 hot flashes a day. Yes, I kept track a few days so I could tell the doctor to find out if this was supposed to happen. The meds have never helped with the hot flashes or night sweats, and the amount per day has never changed two years later.

I couldn’t do the yoga or healthy living because of the heart failure. Plus, the temperature was -40 when the programs started, and I was busing to these locations.

What is your current medical status?
My current medical status three years since diagnoses. No recurrence yet!

 

Life after cancer:

How is life different for you now post diagnosis?
I have chronic muscle, joint, and nerve pain, all day, every day. Some days are better than others, but the pain is consistently getting worse. My muscles are very weak, no matter how much I exercise to strengthen them. I am constantly injuring myself by pulling muscles and getting light fractures. My bones are deteriorating and constantly ache all day and night. My radiologist told me I’ll have osteoporosis within five years because of my already weak bones prior to cancer. Menopause and hormone therapy is very hard on the body

My fingers and arms are always going numb throughout the day. I can’t elevate them much before they go numb. My left arm is numb from fingertip to shoulder blade every morning. It’s extremely painful.

My eyes rapidly started changing during chemo. I am now near- and far-sighted, and have astigmatism in both eyes. I got glasses in spring 2017. My eyes are consistently deteriorating as the years go by.

I suffer from extreme brain fog. Every side effect listed, I have. The worst of the side effects for me to deal with right now is speaking. Sometimes when I’m feeling overwhelmed, I start to stutter and am not able to say words. I have dyslexic moments where I see things written backwards, like time, dollar amounts, numbers etc. For example, something could be in front of me on a shelf and I could swear to you that I don’t see it, then—poof!—all of a sudden, it’s there. Those side effects are very, very difficult for me to deal with when trying to work or helping my son with school.

My heart has yet to improve since spring 2017. I am constantly dizzy and I feel like I’m suffocating when my blood pressure rises. Daily house chores and life tasks are getting more difficult to do alone.

The biggest and hardest medical “issue” has to be my mental health. I strongly feel now that the old Andrea died on November 3, 2015. I don’t physically recognize who I see in the mirror. The sound of  her voice, and even laugh, is gone. My thoughts, feelings, mood, and temper, are all different. Every morning when I wake up, I have no idea what kind of day Andrea is going to have. My mood changes without warning and I can’t rein it in to calm it down or sooth myself. It’s extremely frustrating and a constant battle inside my body and mind. I have never felt depression before; it is the scariest feeling of them all.

I suffer from PTSD. That started for me the winter 2017 every time it snows. I would go back to those exact feelings and images of the day I was diagnosed. I feel like I’m in a trance/fog for the remainder of the day, or even days to follow. The world feels very heavy those days. Many things seem to trigger the PTSD for me.

Fatigue has been another issue to deal with. Some days are worse than others, but it can hit like a freight train and you need to close your eyes for a bit. After appointments or the day’s outings, I’m exhausted like I ran a marathon. When I have a lot of mental stress and emotional stress, I get drained quickly.

Life after cancer fucking sucks. It’s definitely a different life than the day before diagnosis.

Nothing in my life is like it was before. I ended a lot of relationships in my life. You learn a lot about people and what humanity and family means to them.

So life since November 3, 2015 has been ever-changing. I am a single mother of a nine-year-old. I’m unable to work because of post-surgery complications, debilitating treatment side effects, and mental health issues. I look like I’m under 30, yet internally I am over 70-years-old and struggling to cope or seeing a brighter future for myself and son.

My son has been my cheerleader/home care nurse since day one. He wants to help in any way he can to make me better. I spend every day trying to make good memories of me with him. I know I won’t live to be a ripe old grandma. I just want to live in as much peace in daily life before I go to battle again.

I can’t seem to get proper care from family doctor. She just sees my age and doesn’t understand my diagnoses, treatments, complications, or side effects. I’m back to self-advocating.

I always ate healthy food before I got sick. Now, I’ve just ramped it up and eat more of a Keto diet to help keep the water retention down and improve my irritable bowel syndrome and curb my chocolate addiction before bed!

How did you get connected to YACC?
I was sitting in a group circle in the expressive art class, and the instructor handed me a flyer. It was for the 2017 Big Cancer Hook-up. I was really hesitant and felt a lot of anxiety about going. I had no idea what it was about or anything. At that time, I was just learning of my friends’ betrayal and desperately needed to get out of the apartment and learn more about my new life. So I went.

The best part about the event was that I could bring someone with me, so I didn’t HAVE to go alone. There were over 10 young adults there. We had pizza, fruit trays, veggies and dip, and soft drinks and tea. It was a party in a cancer care making fun of cancer. I learned that I am not alone in my thoughts and feelings.

We also learned about Localife—another program YACC has in some cities where fellow YACCers get together monthly to just hang out and have fun. We started our own Localife called YAFU (Young Adult Fighters United). We held almost monthly get-togethers for a year until we could officially be called Localife Winnipeg.

I am currently one of now three co-leaders for Localife Winnipeg. We have over 70 members, and the turnout grows larger at every event with new and returning faces. The 2019 Big Cancer Hook-up had record breaking attendance with 37 people!

I attended Survivor Conference and Retreat Yourself BC in 2018. I highly recommend for all young adults living with, through, or beyond cancer to go on both of these trips. I learned a lot about me and how to be patient with myself. I made lifelong friends, and continue to make new friends every month! I have never felt so loved or like an equal in a group of friends in my life.

Another foundation that helped me in my journey is the Never Alone Foundation. A retired CFL Winnipeg Blue Bomber started this foundation when he was diagnosed with throat cancer as a young adult. It’s like the Make-A-Wish Foundation, but for grown-ups! It’s another group of amazing people.

All the programs at Cancer Care Manitoba are for senior citizens. The programs and activities are for them and their current lifestyles. As a young adult, it still feels isolating to join these groups because you can’t relate to a 60-year-old’s lifestyle and struggles!

YACC is the only purely young adult organization I’ve found that teaches and helps young adults deal and cope with our current life situations. No matter how far you are out of treatment, or how deep in the trenches you are in treatment, YACC’s always got your back.

I have switched to having a young adult counsellor who only works with cancer patients; I see him monthly. I also attend a once-a-month group counselling meeting that our young adult counsellor hosts. This helps me stay even more connected to fellow young adults (and recruit them to YACC).

In my closing, the only advice I will give to others who are fighting the fight of your life is:

  • There’s no pill that will make you strong. You are the pill. Try to turn the negatives into positives in all shitty situations. You may not see the positive right away, but you will in time. (Ex. I got a free tummy tuck, two boob jobs, and lipo. I got a crash course in life and what really matters. I learned the truth about who I thought were my allies, yet gained the knowledge and backbone to stand up for myself and what’s right for ME.)
  • Today is all that matters. Yesterday is in the past now; you can’t change a damn thing about it. Tomorrow is the future; it hasn’t happened yet, so why stress out over it? (Yes, it’s easier said than done, but try your best to push it to the back of brain.) All that matters is making the best out of RIGHT NOW!
  • You have your good days and your bad. Ride out the bad ones, and remember it will pass. The good days are the positives.

Thank you YACC for allowing me to share my story in hopes to inspire someone and to reach out to tell others that you’re not alone, no matter where you are in the world.

Would you like to connect with Andrea? Send a message to [email protected] and we’ll be happy to send it along!

 

 

 

 

Our Partners