Jacqueline, I’m so very sorry you had this happen and that it added hardship to everything else you were going through.

When my late husband was in treatment for his own rare cancer, we had one friend in specific who never stopped telling me what we “should do.” He is a really smart guy (he got a perfect score on the SAT) which made the whole thing even worse but I knew that what he suggested ( a liver transplant) was not a possibility for my husband. His cancer was metastasized from elsewhere and a new liver would have been at risk from the get go…and this should have been simple logic for this friend.

The friend called us every so often and would insert his opinion. The worst was that he continued to insist it was what we should have done after my husband died.

This friend was not a doctor but his brother is. So, at one point when my husband was still in treatment, he asked that we forward my husband’s medical records to his brother. It wasn’t a huge amount of work to accomplish this but it did involve an extra trip to the medical center where my husband was being treated (45 miles away from where we lived) and a trip to buy a large enough envelope for the x-rays and scan results and a trip to the post office. Even these small distractions in our day was just plain hard for me. You understand how thin a caregiver is stretched.

I’m sure our friend’s brother explained why a liver transplant wasn’t offered but the friend felt like it was something I should fight for. He never told me what his brother said. He just kept insisting that he knew what should be done.

It’s enough to make you want to pull your hair out and scream. Not helpful. Just awful.

I can’t imagine all you have gone through. I’m glad you are writing about it and sharing some of this with the world. People need to know that a treatment plan is what you decide on as a family. You trust your doctors. It is important…so important that you trust your doctors. All of these suggestions are not just not helpful. It’s cruel.