The C Word – A New Battle Day 181 - Comparing Notes

This past Saturday I pulled together a group of PMP survivors and caregivers to “ring in the new year”.  I tried to gauge the time based on the small group that gathered in July.  That one had 7 people in attendance, this one was more than double that.  While three hours seems like a long time, some of us lasted four hours.  We were so grateful that the restaurant did not seem to mind us hanging out that long.  As people left to go elsewhere we gave up the unused tables to they could get other customers in there.

Of particular interest is the fact that not one of the PMP survivors in this group has ever gotten a NED (No Evidence of Disease) diagnosis.  Of the 8, 50% were male.  All of the male members had one or more surgeries with the final diagnosis that HIPEC could not be done due to the extent of the disease.  So the guys really were able to compare notes and talk about their current maladies. 

Of the four women, a couple of them are expecting a second surgery sometime in their future. 

ALL of these people are so nice.  We had a good time being together and spending at least a part of the time talking about their lives beyond the disease which has taken over them. 

Since this disease is so rare, it is hard to have conversations and feel a connection to other cancers.  The body parts that are removed are far different from other cancers.  As caregivers it is also difficult to relate to other caregivers.  For the most part, our spouses “look healthy” and, aside from twinges and fears of small bowel obstructions, if you didn’t know there was anything wrong with them you wouldn’t suspect anything.  For now…. At least for now.  Not one person there wasn’t aware of the fact that things could change for them at any point. 

That’s the thing with this cancer.  It lurks.  It lies in wait.  It’s unspoken yet always there.  It changes your life.  I know all cancers do, but advances in some cancers means cures or good prognosis. 

But events such as the one we had on Saturday makes us feel part of a community.  One where we can appreciate one another, support one another and feel that we are making a difference helping each other out.