What to Say?

Today I thought I would try to give 5 pieces of advice on things to say…or not to say… if/when you are talking to someone who either has…or is caring for someone who has…Glioblastoma or another terminal illness. When I think back on some of the things that people have said to me I believe that every single one of them was said with the very best of intentions…which is so important…and which I always tried to keep at the front of my mind.

  1. It is okay to admit that you don’t know what to say….because really there are no perfect words…there is nothing magical you can say that is going to make the situation better. Some of the times I felt most supported were by people who simply said “I am so sorry to hear what your family is going through. That just really sucks. I don’t know what else to say”. This is very non-threatening and allows the person to either just say “thanks” and leave it at that…or say more if they feel the need or want to talk.
  2. Try not to ask “how are you doing?” I know it’s hard because it’s a natural inclination to ask anyone that we talk to that…but it is virtually impossible to answer in this circumstance. My stock answer has quickly become “I’m hanging in there” because nobody wants to hear the real answer to that question…and frankly most of the time I don’t even know.
  3. Please don’t give medical advice based on your neighbor’s friend’s sister that overcame breast cancer…or your uncle who had pancreatic cancer that is in remission. I know it is human to try to understand a new situation by comparing it to something you know about. The fact is that Glioblastoma is a f’ing asshole that is way different than any other type of cancer. Believe me….there is no knowledge that you can share that the caregiver has not already heard of, researched, asked their doctor about, etc. The caregiver quickly becomes an expert on the illness and any and all possible treatments out there.
  4. So many people would say things like “I hope you feel better soon!” or “Keep fighting!” Again…best intentions…not really the best things to say to someone with terminal illness. Something like, “we think about you and your family often” is a much better option.
  5. Instead of saying “Please let me know if there’s anything I can do for you” try to give examples of concrete things you would be able to do to help out. For example, “We live really close to you. Let me know if the boys ever need rides.”

Maybe that is helpful…maybe not. Circumstances like this don’t come with a handbook outlining the perfect things to say and do…because there really aren’t…but I think these are good things to keep in mind. Just try to be as supportive as you can possibly be because that is what the caregiver truly needs…and reassurance that they are doing a good job.

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