Words of Wisdom: Tips From Those Who Have Been There

What tips do you have for other brain tumour patients?

Listen to music: It speaks when we cannot.
~ Marcie

Don’t be afraid to talk about pain. Be aware of your symptoms or signs, and tell Health Care Professionals how you’re feeling. Communicate with your caregiver about what’s happening inside your head – no pun intended.
~ Gordo

Don't do any online research unless from an approved medical website! Let friends and family help you! Rest and eat well!
~ Debbie

Can’t stress this enough: stay off the internet, you are your own person and statistics lie and people seem to only post the bad stuff!
~ Natasha

~ Paddington

My main and big tip is to never be a sheep, don't just accept what one doctor says if you aren't happy, get as many opinions as you can.
~ Christopher

Listen to your health care professionals and try to be a ‘patient’ patient.

Never say in conversation "my brain tumour...", as if you own it. You nurture and take care of other things you put "my" in front of (my kids, my car, my dress). "The brain tumour..." "The alien...." "The %^&$* in my head...." Mentally it is very important not to make friends with it.
~ Sarah

For as long as you can, continue to do the things that make you happy... then when you can't - find a new way to experience the things you love…Perhaps with the help of friends, family, and loved ones. My uncle loved restoring and driving his 1970 Pontiac Firebird, he beat brain cancer twice before it came back for the final, third time. He could no longer drive at this point, but his best friend and family made it possible for him to continue to take rides…and his best friend is now finishing the restoration.
~ Paddington

Remember it’s easier said than done but positive attitude will come if you participate in life. Try to maintain some normalcy; try to get a routine back like you did before. Wallowing can suck the life out of you.
~ Gordo

Don't be afraid to share all of your feelings (caregivers too) be open and honest......and YES listen to music!
~ Heather

Always say sorry to your caregiver when you need to, I sometimes think it's harder for them (mine is my mother).
~ Christopher

Take advantage of the help that is out there: There are so many people at cancer centres to help you –Nutritionist, trainer, social workers. Employer benefits – know your policies and do your research. Find out what you can get like short-term and long-term disability. It’ll get better with time.
~ Gordo

Self-Advocate!!!! Fight for your rights!!!! And if you're unable to, take along a person who can do it for you, with you...it makes a difference!
~ Shelley

I second the self-advocate (or have an advocate who is informed of treatment options etc.). Make sure you bring a family member or friend with you to all appointments. It is too hard to absorb all of the information by yourself. Write down all of your questions before hand.
~ Deborah

A lot of good info from Brain Tumour Foundation of Canada; get the newsletter, the Supporting You newsletter, unbiased, honest, frank and positive news, but still realistic. I loved the Ask the Expert on driving.
~ Gordo

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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