Words of Wisdom: New Diagnosis

What words of wisdom would you offer to a newly diagnosed patient or family?

I was just diagnosed in March of this year. There are two things I would say! First, No matter what anyone tells you they don't know the "you factor"! Your determination and your drive to beat this cancer! Second, you have to be an active participant in your own life!
~ Debbie

My husband (was diagnosed in July 2010) and we kept telling each other to stay strong stay positive and lean on each other and we will make it through.
~ Wendy

My husband was diagnosed in February 2012. It's still pretty new but I would say to stay off the Internet and doctors don't know everything, so stay positive and ask for help when you need it!!
~ Natasha

This is your opportunity to honestly show yourself and everyone around you how strong you are! I was diagnosed with a serious brain tumor October 5 and had surgery October 7. I have 4 kids and all of my thoughts were I needed to stay strong and survive this for them! I am have been referred by my doctors as "one in a million" so I am proud to say miracles really do happen!! I am thankful for each and every day I have! Cherish the time you have with the ones who matter most! Hugs to everyone.
~ Sharon

It’s really hard to know what to say. Sadly my mom passed in February 2010. She lived 2000 miles away and I got home to see her three times over that 10 months. What I told her was how much it sucked that this is happening to her and that I wished it wasn't happening. Sadly I suspected that when the diagnosis was confirmed she pretty much didn't want to fight it. I feel she just put in her time (10 months) her life had changed from that point and I think she accepted that. We made her comfortable, had a lot of laughs and told her it was ok to let go. I think she was at peace.

Also, every person is different in how they handle this monster. The stories above break my heart. Most times I just don't know what to say but it would start with, "just be honest" in your thoughts with them. Don't sugarcoat or say false things. It really does suck big time and my heart goes out to each and every person.
~ Cindy

I know how hard it is in the initial stage when you find out and all is a blur... best I would do is be a shoulder to cry on and an ear to vent to. Words can seem kind of meaningless when you first find out about a brain tumour... at least they were to me when my husband was diagnosed. The main things I would say is that “I am here for you whatever you need...”
~ Siobhan

We are here to help. Brain Tumour Foundation of Canada is here to help you along this path. The support groups are a great place to start. You are welcome to come out at any time along the journey. Support groups aren't for everyone but they do offer a chance for people to connect who are dealing with the same issues. Everyone grieves differently and experiences things in different ways but, I guarantee that at some point, you will connect with someone who has gone or is going through many of the same things and feelings as you.
Ingrid, Survivor, Volunteer

I now say, take lots of pictures even when you don't feel like it. You and your family are your advocate. There are resources. Most of all find a brain tumour support group and you will find hope and friends to last a lifetime. Even if that lifetime turns out to be shorter than you wish. And of course Play to Win! Sadly, my husband Paul died July 17, 2010, less than one year after being diagnosed.
~ Lois

My daughter just completed her chemo treatments in May 2012. I would like other newly diagnosed families to know that it’s okay to be sad and mad sometimes. You don't need to pretend everything is okay. But take every help you can get and take it each day at a time and focus on the positives, the love from family and friends. For me, leaning on my faith, when things seemed dark, god lit up our way.
~ Sophia, Parent of a child with a pediatric brain tumour

Do not be afraid to ask for help. The people that love and support you will be glad to help you in any way they can. It will help them feel useful and you feel better because you got the help you needed. Be patient. Time will heel things eventually. Your hair will grow back. Your scars will heel. Your scars will eventually not be so sensitive and tender.
~ Anonymous

Always always listen to your body. It will whisper to you what it needs from you. Listen closely. Self care is so important. There will be people that think that because you 'look ok, that you must be all better'. Explain to them the severity of what you've just gone or are still going through. Your brain is so powerful, yet so delicate. Just like all of us. It will heal, so will we. It just takes time. Listen to the whispers. 
People who have never (thankfully) lived with a brain tumour will not be able to appreciate your struggles. I found great comfort and understanding through on-line support groups, like the group through Brain Tumour Foundation of Canada. Everyone in those groups can relate to you, your story, your feelings. You really are not alone!!!
~ Donna 

 

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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