Jen,

Not to judge your doctor, but...

...you have received perhaps the toughest news of your life and the road ahead, although well-traveled, will be like nothing you have traveled before (I hope). A doctor that appears impatient may just not know enough about what you are facing and is trying to keep you from asking too many questions he can not answer. Just a thought.

Assemble your team, find the best possible place to engage in the battle for your life. Identify all of your needs, on paper, and seek out the team that can address those at a major cancer center. The first few weeks of radiation will not be as tough as the last 2-3 weeks and you may want to find alternative living arrangements for the last part. Find a less stressful way home and it may allow you to wind down a bit. Seek out friends, family, etc., and reach out for help. People will come out of the woodwork once summoned. If you are a member or attend church, seek out folks there for help. Take your list of needs and find a solution for each one BEFORE you start treatment. Executing your plan will be easier than devising one in the midst of treatment.

Do not, I repeat DO NOT leave any appointments without pulling out your list of questions and assuring yourself each one was answered to YOUR satisfaction. You may step on a few toes, but this is your life you are battling to save. You can always do like I had to and work through a couple (..or FEW eek ) apologies after the smoke clears. Trust me, they understand and they see this every day on the job.

All of your questions are valid. Now, go get the answers you need for peace of mind.

Good luck,

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