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Caregiver Tip: Phone Tree for Information

There is no time to take a breath or relax. There will be no routine, only we haven't realized that at this point. No time to make a plan for keeping everyone in the loop. As I have mentioned before, I needed a lot of help but I didn't know what type of help to ask for and it was constantly changing.

One thing would have been a better way to get information to family, friends, and well-wishers. I didn't have time to figure out a call tree or text message tree. But I am certain if I had asked Dan and Danielle or Diane to work it out for me they would have, I just didn't know to ask.

So that would be my caregiver tip for this post, set up a message delivery system early. Not only were there times when I didn't have time to send or reply to everyone, but there were places at Moffitt where receiving calls or texts was next to impossible.


Texts between me and Diane

Going home this afternoon!!
Sent March 25


Oh wow….very cool! Is there another
chemo treatment this week?
Rec’d March 25


Please recall my caregiver tip from the last post, that when there was an appointment at the Sarcoma Clinic it meant blood work first in order to check that all of Mathew’s counts were up for chemo that same day. At this point, I haven’t figured that out yet, so I tell Diane no chemo, that I believe it is an appointment to go over the treatment plan. 


I’m sort of dreading it to be honest.
Always that dose of reality. 
Sent March 25


I understand. Do you want 
Arpie/me to go w/you. If we can
arrange it? What time is it?
Rec’d arch 25


Because the appointment was on Thursday, Arpie’s day off, all of us were able to make the appointment. In the texts between me and Diane and me and Arpie I give them directions to the Sarcoma Clinic based on how often we had already passed it on the way to Mathew’ numerous procedures. 


Texts between me and Diane

We have to be there for blood work at 7:30 
and then to the Sarcoma Clinic. The place
we always passed on the 3rd floor going
for x-rays.
Sent March 25



Texts between me and Arpie

Going home this afternoon!!
Sent March 25

Nice! When is the midway treatment?
Rec’d March 25

Don’t know but he has an appointment with
Dr. Reed Thursday morning.
Blood work at 7:30 and then to Sarcoma
Clinic.

I would like to be there at appointment
with Dr. Reed. Please send details.
Rec’d March 25


Yes, I will call you this afternoon and
explain where it is. We walked past it
every time we went for ultrasound,
x-ray, and I.R. 


I remember seeing it now that you
mention it.
Rec’d March 25


FYI, how to get to the Sarcoma Clinic at Moffitt Cancer Center.

Go to the Gold Valet which is the entrance where the blood draw lab is, turn right and go to the elevators right before Starbucks (Yep, this would become our routine, blood draw, Starbucks and then Sarcoma Clinic.) Take elevators to the third floor, exit to the left, hallway makes a sharp right turn, follow until you see Sarcoma Clinic on the right.

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