Quote:
Originally Posted by Spirit Dancer
Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.
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((((((((fiercegrrl)))))) and (((((((((all those that come here to post and read)))))))).
Great advice Spirit Dancer. Information gets lost in the desire to just live and breathe. We take so much for granted. I need to write a story, and vent..so here goes.
My friends life changed forever in a simple hospital visit yesterday. She has no family locally, lives alone and has 2 cats. So far, Radiation doctor wants to start treatment. Onchologist wants to start chemo. She had a portacath inserted last week.
I took MB to the hospital yesterday to have a feeding tube inserted via a laparoscopy, and an expected overnight stay so they could teach her how to use it and observe her status. Due to breathing complications , she ended up in ICU on a ventilator as I type this. She has been going through testing for esophageal vs. lung cancer over the last 6 weeks, and has lost 30 pounds, because something was closing off her throat and she couldn't swallow. I was in the room when the Anesthesiologist and the Gasterenterologist interviewed her about what , when , where she had things done. She was totally dazed. Since I had taken her to the hospital/Dr. visits all over SO Cailf, I knew she had the PetScan, when the portacath was done, and when the thyroid biopsy came back adenocarcinoma. Docs. said "You seem to be having trouble breathing . She was indignant and said "You would be too, if you couldn't breathe or swallow, and you had this thing pushing on your throat.". They KNEW ahead of time. I told them she wasn't able to have an espghogram because they couldn't get even a pediatric size tube down her throat. She said "Oh yeah, I forgot about that"
Well, the Surgeon came out to tell me the feeding tube was in and the surgery went well, and she would be in the recovery room and go to her room in about an hour, and they would call me on the surgical waiting room phone. 1.5 hours, I called recovery and was told she wasn't in there yet. I called again at 2 hours, 2 1/2 hours and the 3rd hour call , a nurse came out to tell me..
" There are complications. She isn't able to breathe on her own. Doctors are deciding if she needs a trach,needs to be put on a ventilator. Are you next of kin, a relative, or?/?." I was dazed, said no. and she said well, I can't tell you anymore . I called Milana's sister who lives in Northern CA to tell her the news, and she called me back to tell me they are taking Milana for a Cat scan to see the position of the tube, she is on a respirator, tied down, and sedated, and I am not permitted to see her since I am not a member of the family. She said she will call me with any news.
Life changed for Milana at 3:30 PM yesterday, and for all her gay friends who are shut out.
So, I just needed to vent..
Keep a journal for those that can't. I wish I had thought of that for Milana.