Words of Wisdom: What Do You Wish Others Knew?

What do you wish 'the rest of the world' knew about brain tumours and dealing with a brain tumour diagnosis?

Thank you to all the patients, survivors and families who contributed to these answers, you insight is important for both others on the journey and those who don't have a personal connection to the brain tumour community. Thank you.

"You can't judge a book by it's cover!!.....Because, even though the scars of the surgery are healed and covered by hair, doesn't necessarily mean that the tumour is gone or the treatment is over, or the seizures are over. I may look better than ever....but ....emotionally, I'm a wreck!"

"Challenges are faced daily: my daughter has been diagnosed with a low grade glioma and the past 10 months have been one challenge after another and it is exhausting."

"It is a never-ending journey, after the surgery, radiation treatment, follow-up MRI appointments; the need for support never ends. Phone calls and visits from family and friends are just as important during the most critical time, as it is every single day after that initial phase."

"Please look the patient in the eye when you are speaking to he/she, they can hear everything and have the right to voice their opinion regarding their care etc. My mom is a stage four survivor, and I remain optimistic that she will beat this. Live for today."

"We are dealing with a recovery that can be very slow, long and scary. It seems so full of unknowns which is very difficult."

"It is a never ending journey that you will never be alone with. Never be afraid to ask questions and ask for help or understanding."

"I wish people knew that this journey's scars are sometimesnot visible to the naked eye. I am a brain tumour survivor but I still carry part of my tumour with me, it's a part of me. I'm lucky to have come out of resection surgery with 'minor' side effects- loss of my periphal vision. It's so frustrating and at times disorientating to piece together what I think I'm seeing. Those around me have no clue about how I'm struggling with my thought processes. I know I've changed."

"The symptoms, so doctors can learn to be more aware and act more quickly.  If you know something isn't right then trust your gut feeling. If you are a patient or a parent - switch doctors till you find one who will take you seriously and listen to you."

"I think what the world needs to know about life with a brain tumour is that it is a lifelong journey that effects not only the patient but also the family. After treatments and surgery, it  changes your lifestyle and with knowledge, your peer groups and great friends by your side, every step is more bearable. We need to know we have the support when we feel we don't have the strength to keep going. Support is the greatest thing anyone can do for the survivor and families."

"Some people loose their short-term memory or have other deficits after a brain surgery, please be patient with them."

" I want people to know they need to lend all their support to patients and their families who are in the fight of their life. And also to lend support to help make every moment in that patient's life memorable, happy and beautiful."

"An operation can be just the beginning of the journey. Depending on the specific situation there can be ongoing impacts and no matter what there is a need for regular monitoring and that keeps it and your health care on your mind."

"I wish the rest of the world knew the following: (I say with my own warped sense of humour)    

  1. Getting a brain tumour did not make me stupid, hard of hearing, and unable to make a single decision for myself.   
  2. I still know I do not like brussels sprouts.  (Nice try mom) 
  3. If I am laughing, it is because I still have a sense of humour, not because I am in denial.   
  4. If I feel like crying, I will.  If I am not crying it is because I don't need to, again not because I am in denial. 
  5. Sometimes what I really need is for you to be the friend you were before I was diagnosed.  The one who called me up and gossiped about your crazy neighbour who gets his paper in his tighty whities every day. 
  6. I am sitting here waiting for my friends to show up - because so many of you have disappeared and I miss you 
  7. None of your sentences in response to my statements, should start with "Yeah, but ..."  All that does is make me feel alone. 
  8. This brain tumour thing has not been all bad - I learned a lot more about life in one year that most of you will learn in all your years. 
  9. Let yourself need me - it is hard to always be the one who is needy  
  10. Most likely I can still "speak for myself" - and even if it is hard
  11. I may look different, sound different, and live different - but I want to be heard and understood 
  12. State the obvious - right now I have no hair, some wicked scars, baaabyyy am I a sight!! - Hallowween is all worked out this year  
  13. Be yourself 
  14. Let me be myself   
  15. I have already heard 8,642 ways in which someone, somewhere in the world "beat" a brain tumour - I have a top notch team of neurosurgeons, specialists, and doctors - thanks for the story, but I am going to put my trust in them"

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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