Posts
We live in such a digital age these days that you can make
new friends in a virtual world around the world. But there is so much more to relationships
that you can only achieve true friendship when you have a "live”
connection to them. Then, the
relationship becomes much more personal.
We have both been part of a Facebook Group for just over a
year. I don’t think we found this group until
well after George’s surgery. Someone
happened to mention it in another support group that is run my Team Inspire (online). As part of this group we see daily postings
from others with this rare cancer (PMP) and hear from both survivors and
caregivers as well as newly diagnosed persons.
It is a very supportive environment where one can ask questions, pose
thoughts, rant about the latest symptoms, etc. and where others will understand
what you are going through. BUT – in
some ways one still feels rather isolated.
To reduce that, George and I have reached out to a few
others over the past year. One is a
couple from Tennessee that we have spoken to on the phone. Another was local and had surgery at Kaiser
just up the street. But there are no
local support groups for people with “our” kind of cancer. I’ve attended a caregiver support group locally,
but so many of those are dealing with “regular” cancers for lack of a better
word. And many of the ones that were in
the group when I went were dealing with end stage cancers. I just couldn’t identify with them. My husband had ONE surgery, ONE chemo
treatment during surgery. And he lost a
LOT of organs in that process. BUT – he was
doing pretty well and was on the uphill of the surgery. Very hard to identify with others in the
group.
For that reason I reached out to others both in the
Facebook group and the Team Inspire group – and was so grateful that I got some
responses. A meeting was held this past
weekend in Stockton which appeared to be about the middle distance for those attending. Pam from Sacramento, Lindsey from Stockton
and Judy from Livermore made their way to the restaurant on Saturday (which
also happened to be George’s birthday).
Pam and Judy brought their spouses.
We ended up being in our own room at the restaurant for which we were
grateful. Our waiter, Billy, was so
great. He kept coming in to get our
orders but we spent so much time talking and getting acquainted that we did not
even look at the menus!. At one point he
came in the room and stopped at the head of the table. I stopped the group and said “I think he has
a question to ask” and he said, “No, I don’t, actually. I was interested in your conversation. You see, my uncle died of cancer last year. And, years back I had a health issue and was
told I would never walk well again. But
I went online and found a doctor in Malaysia and he talked about doing yoga,
etc. and here I am walking!”
Praise!! So he was quite content
that it was nearly 1 ½ hours before we even ordered our dinner. He checked in
on everyone periodically for drinks. He
was tipped well!
Anyway – we spent three hours at the restaurant sharing ideas,
thoughts and stories. Pam, Lindsey and
George had already experienced the HIPEC.
Judy has had CRS but not the HIPEC yet, she is scheduled to have that in
September with Dr. Lowy in San Diego. The
three who have had HIPEC shared how they are feeling, physically and mentally,
and discovered that they “are not crazy”.
Much of what they feel is universal.
A pinch here, a lump there, fatigue or lack of stamina, all seem to be
normal after affects. We were able to
provide information to Judy and her husband.
They were surprised to hear that it will take much longer to recover
from the HIPEC than the debulking part of the surgery. And we let Judy’s husband know that she will
look very “inflated” after surgery because of all the fluids they pump through
the system. But not to worry, it is
temporary.
It felt so good to be in a room with others who “got it”. Especially the survivors. They will say that no one, not even the
spouses, really understand what it is they feel. No one except someone else who has
experienced it. Yes, it was so good to
meet these others in person. Now we
really feel connected. We have finally
met other survivors of this horrible disease.
And we plan on doing this perhaps twice a year and have an opportunity
to meet others in the area.
From there we stopped in to see Stephanie and Justin.. and
then on to see George’s longtime friends, Larry and Betsy. They’ve been friends for over 40 years. We spent the evening talking to them and
visiting, went to church with them on Sunday morning and then to breakfast. Dear friends, longtime friends, cherished
friends. We so appreciate those
relationships that have stood the test of time, that have not wavered through
all the personal changes that have occurred over the years. The type of friendship where you can discuss
just about anything. There is much
comfort in those relationships.
Healthwise things appeared to turn a corner over the
weekend. George’s bathroom trips started
to decrease. I suggested he add in
another Immodium during the day and that appears to have helped. I think he is also decreasing one of the meds
that he was given as we saw the surgeon as well. That combination appears to have made life a
little more comfortable.
We now have his “love buttons”, the grandkids, Addy and
Bella here for the week. A good
distraction for him as they are his for the day! He takes them to vacation Bible school in the
morning and then on an excursion in the afternoon. Yesterday it was swimming day at Uncle Keith’s. Today it is NASA out at Moffett Field.
We have one week left
until surgery #2. The next four days
will be full of time with family and friends.
And then, the quiet times begin and anxiety will slowly take over as the
“elephant in the room” takes up residence.
But, for now, we will enjoy some good times
No comments:
Post a Comment