Words of Wisdom: How Do You Find Strength

How do you find strength on the journey with a brain tumour?

As part of Brain Tumour Awareness Month 2012, we asked you how you find strength on the journey with a brain tumour. We were overwhelmed with the responses. You will find them all below and we hope they help you find strength.

"There were times that I didn't have strength and needed to be carried like a bird's wings are held up by the wind. But my young children's faces became that strong wind; I want to be there for them to see them graduate, get married and be a grandma to their children."

"The love of family and friends The need to be strong for loved ones Support from support group - sharing and relating with people who understand and recognizing that there have been some success stories * Understanding that a positive and determined attitude can make all the difference through this experience"

"My Father passed away of a brain tumor two weeks ago. It has been a difficult journey, since he passed away only 6 months after he was diagnosed. However, I found strength through his positive and inspiring attitude. He not once told me that he was in pain or suffering, instead he would say that he was going to get better every day. Now that he is gone, I find strength in the memory of the good times that we shared, the outpouring support of those that had the fortune to meet him. And every time that I close my eyes I try to imagine him as the healthy, athletic, young man that he once was because I know that that is how he would like to be remembered."

"I focus on the love of my wife and kids. I want to be with them and will do what I need to for that. Yoga has really helped me integrate my mental, emotional and physical self."

"My family, is my strength."

"I find strength each and every day from within myself, a positive attitude and gratitude."

"I was diagnosed four days before Christmas 2004 and told to go home and get my life affairs in order and have a "Merry Christmas" and that we would deal with it in the New Year. I did my chemo and maxed out my radiation and then was told there are no more treatments, and that 75% of the tumour was gone. By the summer of 2006, I was given one year to live. That was 6 years ago and I am still here. I decided to live with cancer instead of dying with cancer so I keep as busy as possible with volunteering in the community and fundraising for chartities. Every year when I hear those magical words "No changes, No growth", I celebrate by signing up for the Princess Margaret Hospital Ride to Conquer Cancer 2 days/200+kms Toronto to Niagara Falls ride. I have done all 5 rides and sign up for my 6th next June. I also work on my bucket list and my meet hockey hall of famers, the Prime Minister of Canada, rode shot gun with the OPP, met Ron MacLean and Don Cherry, Olympic Torchbearer, Great Wall of China, and so much more. My two boys are my really strength and I want to see them graduate high school and my beautiful wife helps me stay alive. Then there is my golden retreiver who is by my side day and night. I like to say that I am too stubborn to die or God isn't finished with me yet and it must be that I am from Nova Scotia and it is the East Coast in me why I am still here. Live like you are Dying by Tim McGraw is one of my favourite songs."

"Making plans for all the things I want to do but have kept putting off. Time waits for no-one and now that I have a tumour,I am going to kick it into gear.Just finishing a three-month holiday traveling and will go back for my doctor's appointment then depending on results head out again!"

"I've known I've had a tumour for at least, oh 20 years, however didn't find out it was a' low grade malignant tumour' until three years ago...That's when my perspective on life changed...I sought counselling, I decided to try to get back into shape and lost 125lbs (so far), I returned to church, I reconnected with friends, I started listening to music again.....LIVING each day."

"Thinking of the wishes and dreams that I have and no matter what I need to reach them, and make them come through, living for the bright days!"

"From others, knowing I am not alone, it means the world to me to have others to lean on."

"I try to write in a daily journal five things I am grateful for that day."

"I am finding my strength from the lord, He carries me when I can't carry myself. My family care so much always checking on me through each day."

"On March 01, 2011 my finance was diagnosed with a left temporal lobe giloblastoma. On March 3, 2011 he had the tumor resected, and we learn that suvival for this type of tumor was about 15 months. After surgery he had many complications that left him in NICU, unable to walk, talk, eat and had to undergo months of rehabilitate along with radiation and chemotherapy. Life was a constant struggle and living in a smaller city there weren't a lot of resources for us to access. The Cross Cancer Hospital in Edmonton assisted us with finding resources and even though we knew that we most likely wouldn't get to celebrate our first year anniversary together. We married July 17, 2011... a weekend where I took him out of hospital to get married, where we celebrated our love and life together surrounded by friends and family. He wasn't able to walk far or even speak very clearly that day, but together we jumped through hoops to make the day possible. After the weekend he returned to hospital, to continue battling the complications of his cancer. It was his final wish to get married and it gave him the strength and inspiration to continue battling this awful illness. In October 2011 he was strong enough that we went on a short honeymoon with assistance from family as he required the use of a wheelchair, and 24 hour care. By November 2011, I stopped working at the hospital where I was a LPN and he was a patient and took him home. We had a wonderful Christmas together with friends and family; took short trips and went to movies, and tried to fit a life time of experiences into what time he had left. Friends, my nursing experience and the support of his family doctor made it possible to keep him at home instead of hospice or long term care. On May 06, 2012 he passed away only two months short of our anniversary. But those months from diagnosis to the end we did more than some people do in a lifetime."

"Take one day at a time and live in the present. Make short term goals, and work towards them, peer support through brain tumour websites, take time to cry if you need to, and then breathe, take care of yourself." (caregiver of husband with GBM)

"My mom battled with a brain tumour for close to 2 years before her death in 1990. In that time we (myself, brother and dad) bonded together as a family there were a few bumps along the way...) I found strength in the courage my mom had to live with such passion and joy knowing each day was one closer to her last. Although an unpleasant experience to live through, to this day I draw on the courage she had when I am faced with challenges."

"I lost my husband to a brain tumour ten months ago. I am not sure I have strength--certainly not every day--but what helps me is to share all of my feelings with him. I write to him almost every day in my journal. It helps me feel connected to him and reminds me that our love still lives. I also listen to songs that remind me of us."

"The best advice is take one day at a time. Use your resources wisely: spiritual, people and medical. Count the milestones and progress. Write them down in a journal or post on the refrigerator. Being a survivor means being strong enough to ask for help; being a caregiver means knowing when to help, and when to assist as needed."

"I am a survivor from Feb. 2000. When I woke up the next day, and realized that I was one of the people with no impairments, I cried, as I realized how God had given me a second chance. I find strength in reaching out to others and helping them on their journey. Keeping active in the Kitchener-Waterloo support group... hose things give me a reason to push forward."

"Staying positive and only trying to control the things that we can control. Making sure that we are eating healthy and our environment is healthy!!"

"My husband died from a brain tumour two years ago - just two months after our second child was born. I looked to my kids for their outlook on life - their passion to enjoy each moment and the hope of promise for a good future. They pull me through/up every day."

" #1 God! Having faith keeps me encouraged and hopeful #2 My husband, mom, sister and grandparents are my major support."

"When I was first diagnosed with a meningioma in 2005 I was shocked and very frightened, despite my doctor's reassurances. It was several days before I shared the news with my husband and we decided not to tell and alarm the rest of the family until we had more information. A co-worker told me ofBrain Tumour Foundation of Canada and I sent for a Brain Tumour Handbook. What a relief to have some reliable and digestible information!

"Then I started some computer searches and found Meningioma Mommas. This is an online forum for people affected with a meningioma and for their families and caregivers. This became my lifeline. I was able to access information and ask questions of people who were actually walking the same or similar path with me. It became empowering to be able to help someone else through sharing my own journey."

"The hardest thing I found about that first year, while I was on wait and watch was the waiting, the unknowing of when the shoe was going to drop. I spent that year online every day. I grew to understand a lot about meningiomas and some of the medical pitfalls."

"It is very, very important to become as well informed about your specific diagnoses as you can. You have the right to be informed, It is your obligation to be informed. Then you can be proactive in your own treatment. That gives you a degree of control. Once it was determined that the tumour had progressed and it was time to plan for surgery I went on-line again to Meningioma Mommas and asked if anyone knew of a brain surgeon who specialized in the brainstem in the Toronto area. By the next day I had two names. I researched them both. I asked my doctor for referrals and went to see them both. From my visit I selected the surgeon whom I felt most comfortable with and who was more accessible to me."

"I firmly believe that is why I am here today. My own doctor tells me I know more about brain tumours than she does. I had a very good reason to be aware of what the risks were, what to expect and the questions to ask. Don't be a pawn. Take part in your own decision-making. Use on-line support groups but be sure they are not trying to sell you something. There are a lot of sites that are not trustworthy. Stick with well accredited sites. Whatever your situation you will feel better if you feel you have some control and some options. You are not alone on your journey. That what it is, a journey. Find others to walk the path with you. Good luck and God bless."

"Talking to friends, family, church, faith, god, brain tumour survivors, (support group, internet...) Activities that help: music, swimming and the people at the complex where swim."

 “I was diagnosed with my first brain tumour 12 years ago, & my second one a bit than 3 years now. Be strong & positive.”

“I was diagnosed March 16, 2012. I find strength by looking at my kids who are 9 and 11.”

“I was diagnosed in November 2008 and my world crumbled. I had the tumor removed in February 2009 and ever since I am always afraid it will come back but so far so good. Life will never be the same, nothing is taken for granted.”

“My dogs really keep me going...our love for each other and my responsibility to care for them.”
“I was diagnosed February 23rd 2010 and my friends and family helped me so much. I kept positive and listened to music all the time...happy songs got me through the majority of it.
My ex-boyfriend also helped a lot but unfortunately we broke up because I changed and so did my feelings after surgery. Keep strong and focus on all the good things in life.”

“My 7 year old autistic son keeps me going. I hope everyone is finding a reason to smile and keep my chin up.”

“I was diagnosed July of this year. My friends and family keep me grounded, and I remind myself every day that there is always someone out there that is worse off than I am. It's so important to stay positive, and focus on positive things in life. Negativity will only bring you down and make things that much harder to overcome.

One last thing: Don't Google your condition. Get reliable resources from your oncologists, neurologists and neurosurgeons. Knowledge is a powerful thing, yet it can go both ways .”

“My mother had a really bad stroke in 2000. She could run circles around me, but has been sentenced to a wheelchair ever since. Her whole left side is paralyzed, she had her left leg amputated due to an infection, yet her will to live and carry on never subsided. I was diagnosed with GBM4 in September of 2011 and although the future does not look promising for me, my strength and inspiration comes from her struggles. I can still walk, jump, talk, listen and see, so who am I to complain and feel sorry for myself! She has been through so much that I am truly awestruck at her will to trudge on and never say a word about her condition. Her strength gives me strength.”

“Just being thankful of every morning and all that I have.”

 

Please note Words of Wisdom are direct quotes from patients, survivors and family members and are offered as insight into others' experiences with a brain tumour only. They are not meant as advice, always consult your health care team with any questions.

 

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