“I don’t Live with Cancer, Cancer Lives with me” - Published version

Earlier this year I was asked by Living Beyond Breast Cancer (based out of Philadelphia) to write an article about how I have coped with living with metastatic breast cancer for nine years. I sat down one sunny Friday afternoon with my laptop when I was out camping, and next thing I knew I had over 2000 words! Living Beyond Breast Cancer needed only 550 words so there was a LOT of editing to be done Then in September I was contacted by the editor of our local paper The Saskatoon Star Phoenix, to write a guest column for a special pink edition they were printing. I readily agreed and sent him my original 2,000 word draft, and the 550 word edit. He’d told me in advance he couldn’t use the long version but wanted to see both articles I’d written. I was shocked when I heard back that he changed his mind after reading it and he wanted the long version. I was even more shocked to see it on the FRONT COVER of the paper (above the fold) the day they published the pink version of the paper on Wednesday October 7th. I promised I would post it here and the time has come! In case you didn’t read it on-line or in the Star Phoenix here’s the long version, basically as it was published on October 7, 2009. The title of the article is the title of the presentation I do at conferences etc.

I Don’t Live with Cancer: Cancer Lives with Me. How Saskatoon woman stayed sane during 9 year battle with Metastatic Breast Cancer. 

By Lisa Rendall

An excerpt from this article was previously published in the fall 2009 issue of Insight, the quarterly newsletter of Living Beyond Breast Cancer http://www.lbbc.org/data/newsletter/LBBCfall09justformeabc.pdf

 

At 35 I learned I had metastatic breast cancer in an extremely unusual way. Debilitating neck pain had me flat on my back in bed and a neck x-ray showed the problem. A collapsed vertebra in my neck, which, according to the emergency room doctors  meant I’d been hit by a truck or there was some kind of cancer eating at me from the inside. A CT scan showed a lump in my left breast growing in toward the chest wall, undetectable - even by feel - to the doctor’s skilled hands. The shock that overcame me when I was told I had breast cancer that had spread to other areas of my body is indescribable. It didn’t compute in my brain. I came into the hospital with a sore neck and you’re telling me I have breast cancer? Looking back now, 9 years later, I don’t think I understood the seriousness of my diagnosis until six months later.

Let’s face it, we’re like all other animals on this planet. We have a fight or flight response. Danger presents itself and we either fight or run for our lives. I couldn’t run from stage 4 breast cancer, so I put up my dukes and instinctively went into fight mode. To make a long story short, I was in a halo (not the angelic kind!) for 3 months, had surgery to repair my neck and underwent radiation and then chemotherapy and Herceptin every week for six months. Through all of this I was upbeat, happy, and a support for everyone around me. However, once chemo was done I fell into depression. I was filled with fear, panic, sadness and sheer terror at the fact that I had incurable cancer. Why had it hit me now, six months after the diagnosis?!

I was so fortunate to have a husband who stood true to his wedding vows, and a great medical team that surrounded me and genuinely cared about me. My oncologist told me I needed to talk to a social worker and one at the cancer centre soon met with me. She became the first ingredient in the recipe to my sanity and she’s still counselling me nine years later. Having a professional counsellor of some kind to talk to means you can say anything you want and no one will take it the wrong way or try to trivialize what you’re saying and feeling. My social worker helped me understand that everything I was thinking was perfectly normal.

While I was going through treatment I took part in a journaling support group. It was a support group that showed us different ways of dealing with a metastatic diagnosis. We listened to relaxation and visualization tapes and did artistic exercises with different media. After completing some of my projects all I had to do was look at it and I was amazed at how my feelings affected the artwork at the time I made it.

This support group was the first time I was exposed to others who were in a stage 4 cancer diagnosis. Along with the pain that comes with losing these new friends came the harsh understanding that not everyone lives. I had to learn to deal with the deaths of cancer friends and how to then deal with the subsequent panic and fear that would hit me about my own mortality. My social worker was there for me when I needed her. I can’t stress it enough. Every cancer patient is assigned a social worker. It costs you nothing financially and is a service available to the patient and all family members

July 20^th, 2009 marked the 9^th anniversary of my diagnosis with metastatic breast cancer and as I look back I know what kept me sane through all of the ups and downs. I have always been a type A control freak; the wrong kind of person to get cancer. There’s nothing I can do to control the situation or what happens to me. I cannot change my diagnosis. I learned pretty fast that I had to find a way to feel like I was in control. At the time the only thing that made me feel like I was doing something to help myself was to raise money for breast cancer research. I hoped it would help me, but I also knew it would help others who would follow in my footsteps. I told my story on radio and television and in newspapers and magazines and I started my own fundraising golf tournament. I didn’t know anything about golf and I still don’t golf, but I knew that golf tournaments were popular fundraisers for charities. With the help of my mom we put on the first Lisa Rendall Golf Classic and raised 4 thousand dollars. It grew year by year and over the past 9 years we’ve raised well over $300,000 for breast cancer research. Putting my energy and focus into something like a fundraiser gave me a feeling of control, and looking back at it now I realize it also distracted me from wallowing in my own self pity.

Here’s how I stayed sane through nine years of metastatic breast cancer.

Along with talking to a professional, talk to others who are going through a similar diagnosis. The connection between two people who really understand what each other is going through gives you real assurance that what you’re feeling is normal.

When you can’t shut down your brain at night or have non-stop thoughts of sadness and panic going through you, grab a pen and paper or get to your computer and write it all down. Even if all you do is type out four letter words over and over (I’ve done it!) to get the frustration out, it will help. Write everything you are thinking and feeling. Walk away when you’re done. Do not read what you wrote or you’ll get yourself right back where you started. Just pour it out, save it (or in the case of a hand-written journal, put it in a safe place) and walk away. You can go back months or years later and read what you wrote and you’ll have a whole new insight into what you were going through and feeling.

Do little things for yourself that make you happy. This could be as simple as buying yourself a single stem of your favourite flower while you’re getting groceries or going for a pedicure with friends.

Help others. By getting involved in a breast cancer charity or cause you will help yourself and others in dealing with, and ultimately beating, this disease. Talk to others in the chemo chair next to you. Just by sharing your story you will help someone.

Have a sense of humour. Don’t be afraid to laugh! Just because you have a life threatening illness doesn’t mean you can’t have a good time! Watch a funny movie, get together with friends who make you laugh, or just allow yourself to laugh with your family and friends. Going to see a movie takes you away from your own life. I love reading but I found when I was at my low points my concentration wouldn’t allow me to read a book without my mind taking me away from the page. I couldn’t even read a paragraph without having to re-read it because my mind wandered off.

Get enough sleep. When I’m going through a rough patch the worst time seems to be at night, laying in bed. Trying to shut down your brain so you can sleep often seems impossible.  Gravol sometimes helps you fall asleep, but if you need something stronger don’t be afraid to talk with your physician. Sleep is a great healer. I listen to a sleep CD that takes me through body and mind relaxation exercises (Sound Sleep Solutions) and it’s made a huge impact on my sleeping.

Recognize that it’s normal and OK to have “down” days. You are entitled to a good cry! Let it out. Keeping it bottled up inside only makes it worse. If you feel like screaming take a drive out into the country and go for it. The first time I did this I actually started laughing after I screamed. The sound of my scream was so funny that I broke into laughter and found myself driving back with a smile on my face.

Find and rediscover things that make you happy.  You can immerse yourself in gardening, baking, or having friends over for coffee. As women (and especially mothers) we often don’t find time to do things for ourselves. Make an effort to find time for you. If you have a pet, take time to play with it and laugh. Go somewhere and play with or watch kittens or puppies. Baby animals and animals in general have a soothing effect and almost always put a smile on your face.

Always have things to look forward to. This can be as simple as looking forward to seeing your favourite spring flower, staying in a hotel nearby for a night, house-sitting for a friend, or if you can afford it and your health allows – plan a vacation. Living in Canada I had always wanted to go on a warm winter vacation so when I got the go-ahead from my oncologist we planned a trip to a resort we’d dreamed of.  It was that first trip that made me realize I needed to have things to look forward to and plan for.

Do things you’ve always wanted to do, or things you’ve never done before, even if they seem silly. I didn’t grow up on a farm so when the opportunity arose to feed a baby calf I went for it and loved every minute. Simple things in life give such great joy.

Learn about your disease. Educating yourself gives you knowledge about this whole new world you’ve been thrown into unwillingly. Gaining knowledge about your disease will give you power and will help you when you are working with your medical team. If you are well-informed you’ll know you’re doing everything you can in your battle.

Get to know your medical team. I mean REALLY know them. Ask about their life and their family, and talk about your own. They’ll see you as a person, not a number and will care more about you. Get to know the staff at your cancer treatment centre that you encounter on a regular basis - from the receptionist to phlebotomy (blood drawing). Write a note of thanks, bring in home baking or pick something up. Let them know the difference they are making in your life. The bonus is that you’ll feel good doing it. On a warm sunny day I picked up some cold slush drinks and took them to the nurses in chemo.

Find others in a similar situation. No one will understand you better than someone going through the same thing. With today’s technology you can find someone to connect with via email if there’s no one in your area.  Create your own buddy system for times when you are scared or sad and need someone who REALLY knows what you’re going through. Be a good listener for them when they need you. You don’t need someone to offer advice, you just need someone to listen and someone you can trust.

Try a new hobby. It’s never too late to learn how to knit or take a pottery class. The creative outlet will bring out another side of you and you’ll have great home-made gifts to give. Grab your digital camera and take it with you everywhere. Take photos that will live on and create lasting memories for you and your family. Enter a photography contest! I took up two new hobbies. I joined the local horticultural associations and started entering my flowers and vegetables in the annual competition. The thrill of my first ribbon is indescribable. I also got into scrapbooking and making my own cards. Take a beginners class and pretty soon you’ll be hooked. You can scrapbook photos of your own life or those of your children…heck you can scrapbook anything!

Try your best to stay positive but realize it’s normal to have bad days. My husband and I say that cancer lives with us – we don’t live with cancer. Looking at the situation in a different light can make all the difference and help you live a full and rewarding life even though you may be fighting for every moment of it.