After the diagnosis: What I wish I had known then that I know now

Here are the words of our families–the ones living with terminal illness every day: 

  • You have to be proactive. I think the one thing we learned is that you have to advocate for yourself. No one is going to do that for you. 
  • More often than not, people just do what the doctor says even if they don’t understand. You have to educate yourself, ask tough questions, and get out of your comfort zone.  The more you understand, the better you will be able to take care of yourself, advocate for yourself, and be prepared when unexpected issues come up.  
  • Financial, disability, and insurance advice can change rapidly and vary from situation to situation, but here are some things our families have learned.
  • Go to a facility where the nurses are good–they are the ones hanging the bags of medicine, touching you, and interceding with the doctor on your behalf. You might know your body best, but they are more aware of what your treatment really entails. Have conversations with your nurses. Be a good patient and be respectful. Let them know you DO want to know all the details, and push yourself to ask questions. A loop is created with the doctor and nurse and it is the nurse who can often ask a doctor to spend more time with you. Work with them.
  • We wish we had given ourselves more compassion and had recognized that it hurt.  We were so focused on the day-to-day that everything else became background noise.  
  • When treatment was over, we didn’t deal with the emotional aspects of all we had dealt with.  Things that we avoided were now allowed to simmer and come to the surface. We are still trying to work on all that.
  • Talk to your kids in an age-appropriate way.  Giving them the right information makes things less scary for children.
  • Don’t put off spending time with loved ones–being together in good times and bad strengthens bonds, which is good for everyone.
  • Find a community. Support groups can help, and that is one thing we loved about IoH. Be aware of depression. Again–this is one area where community comes into the picture and really helps. 
  • One of the best pieces of advice someone gave me is to allow other people to serve and bless you. They want to help. As I’ve humbled myself, I’ve been so blessed. It is hard to accept help, but let people serve you. You would do, and probably have done, the same for them.