Caregiver Tip #3 Become a Patient Advocate

FROM THE NOTEBOOK

2-27-14

Can more pain meds be given?

Rash on back

Mild fever

jaundice returning

concerned he may be bleeding internally from procedures.

By this time we had already decided that Mathew would never be alone, that meant for the most part, that I was with him overnight. Not that he slept much.

TIP: I learned that while Mathew had company during the day, the best use of my time was crunching the timeline. Checking which orders were coming through, checking with the case manager to see what was happening towards getting Mathew to Moffitt.

You can’t just sit and wait.

They knew when they saw me walking up to them that I wanted an update. Someone was sitting at a desk in the hall outside of Mathew’s room working on the logistics. I was impressed, but I know my nudging made a difference.

Comments

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain. We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If ...

A Cancer Poem by Mathew Rodgers 2014

From Mathew’s Journal 4-5-14 “I lie awake in my pain bed metallic noises chirping from my strange computer companion”

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out. I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL 5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. - I’ve been thinking about dying a lot lately. I don’t know wh...

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