 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Christy,
I am so sorry you are having to deal with so much all at once. Be sure and take time for yourself to just enjoy a breath of air every now and then.
If your Grandma's doctors are already speaking of "palliative care" in the US at least it opens many doors for support such as hospice. We used to have a program called "bridge" that allowed you to set up the hospice care team and continue with treatment. When the doctors mention more quality of life factors versus curative factors that should be enough to provide more services with people more equipped to deal with some of the more intense issues you, along with your entire family, are facing right now.
Your mother and your grandmother are very fortunate to have you spending the time to learn as much as you can to help your grandmother right now. Be sure and write down as many of the questions that you have and take your list and work on resolving the issues that are immediately affecting your grandmother's well-being.
I will be praying for you, your mother and your grandmother.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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