Words From Those Who Have Walked in Your Shoes

To help with the litany of emotions you will experience in the days and weeks ahead, we asked 40 fellow patients and caregivers to share the advice they would give themself or their loved one if they could go back to those first days after diagnosis.

Here is what they said:

  1. We will fight together as a family. We won’t stop.
  2. We cannot change the cards we are dealt, just how we play them.
  3. You are not a statistic. You are living with this, not dying of this. Your positive outlook has the potential to heal or help you from declining rapidly.
  4. Never give up, you need to do whatever it takes to fight; and if you lose, at least you have done it with a fight and inspired us all.
  5. Give in to the shock. The sooner you do the sooner you can focus. Don’t rush to tell others. Let the first round of grief be just you and your loved ones.
  6. We have an opportunity to focus on the things that make us happy so let’s attack those with passion. What is the next thing in front of us to improve quality of life–Let’s do that. Let’s help others battling this disease.
  7. Let’s keep living and having fun. Spend more time with each other and in your happy place. Your family will do anything you need – don’t ever be too embarrassed to ask.
  8. Create a team of family and friends around you and have someone on that team begin researching treatments, research, clinical trials.
  9. Stay away from message boards on the Internet, because most of those people are quite advanced with the disease, and their stories and attitude will scare you. There’s time enough to do that later.
  10. Don’t spend time in grief over what you might not have (old age, retirement with wife, etc.), and rob yourself of time you do have today.
  11. It’s okay to be angry about the diagnosis but don’t be depressed because then the disease wins twice: it takes your life and ruins what time you have left.
  12. Don’t shut yourself in.
  13. Don’t panic or try to process too much information too quickly. Allow plenty of time to digest the diagnosis and what it means to you.
  14. Don’t announce it to social media. You will be overwhelmed by responses.
  15. Don’t change anything about the way you were living.
  16. Don’t be angry at your friends who don’t “get it” right away. Some will get it in time; others never will, but at the beginning it’s hard from them to process.
  17. Don’t get depressed, you have to be a fighter from the start
  18. Go out to dinner. And laugh.
  19. Be positive and hopeful.
  20. You are not alone.

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