Scared to death of what will happen next. Third recurrence, have been told tumor attached to trach., esophagus, thyroid and inoperable. Have managed to keep tumor from growing with 6 months of chemo, not working anymore and out of options.
No clinical trials avail. right now for head and cancer!!! That is sad how limited our cancer type has only a few drugs to help.
Wondering if any family members on this site can give me advise or what to expect in the near future?
I have read hospice, can help and wondering how they can help when my breathing is blocked by tumor? Morphine coma....choking to death sounds horrible. I am a DNR, but can't imagine having my husband watch this process?
We Don,t have local hospice home, so it is in my own bed or local hospital?
I can feel the blockage getting worse and don't know what to do. We have appt. Tomorrow with medical oncologist, but want input from this site also. Have referred to this site for ten lonG wonderful years, from my first cancer.
Any advise anyone can give me, might ease the burden on my also frightened spouse.

hello K,

This sort of post describes the tragedy of cancer. Many here battle on fighting recurrence. Having fought the battles for a decade makes you more qualified than nearly all here about what treatments are available and over the years you have had discussions with many different experts.

You are on target that hospice is an organization that needs to be part of your network of advisers along with the doctors and other care providers. Hospice is a service directly focused on servicing your needs and is independent of a given facility whether it be your own home, a care home, hospital, or wherever.

They are there to provide expertise for those having to face quality of life and end of life scenarios in the foreseeable future not some distant far off time.

One of their main goals is to advise how ensuring you and those around you are comfortable and converse on the typical topics one faces.

You are encouraged to contact them anytime and earlier is better as it allows more time to establish the relationship and draw on them as you feel the need.

I'm sure others here have direct knowledge and experience with hospice and will offer their perspective.

You are going to need to seek medical doctors to obtain your range of options relative to managing the cancer growth. Pray God has something that can reduce the tumor to lessen the air restriction.

Don

Have you looked outside your local CCC? Is it possible to get a second opinion? At a different location. PaulB has had somewhere in the range of 6-7 recurrences, they have operated given him major rads and chemo, and done more operations, and then proton therapy. I know someone else who did the same. There are a few clinical trials but I suspect you need to be in a place where they are offered.

If you choose not to go this route then most hospitals have a hospice area. My friend did when she was dying. It was a large room with a large bathroom, and fridge and plenty of space for visitors. If there is no hospice care where you are then maybe look into the hospital as they would be best to manage your pain. At some point you lose interest in food and such so swallowing (assuming you are still taking food by mouth) becomes less of an issue, and air passes through even the smallest space, though at that point the meds they give you can help you sleep through it if that is what you want. My other friend liza went this route. She just basically wanted to be unconscious for it so that is what they did for her. Near the end breathing generally becomes slow and shallow, and really a dose of morphine will eventually stop even that.

I have been with patients when they died, and with my father as wel. He had pneumonia, as it progressed he became less conscious and aware, and his breathing slowed and he just stopped.

I am a fighter to the core so i would be the one telling you if this is confined still to your head and neck area, and you've only had one bout of radiation.. it can be redone. I would push for a second opinion somewhere else. Hugs and love and welcome.

Hello K. I am so sorry you find yourself in this position.
I want to offer you some reassurance on the choking . In my 30 plus years of nursing I have never seen this . Should your tumour be in grave danger of blocking your airway the medical team will do a tracheostomy. We do not let anyone suffocate to death. Please discuss this fear with your oncologist when you next visit. You do not need this added fear and worry.
Of course a Hospice is perfectly placed to help but if there is not one in your area then the local hospital will assist. Maybe your cancer society can help with home nurses?
When the end is near you can be kept very comfortable and without anxiety with a continuous infusion via a pump, with a small needle inserted into the abdominal tissue. This is not to "knock" you out, but simply to take any pain away and relieve any anxiety. Many studies have shown that morphine does not hasten death. Most people are conscious until about the last 24 hours, then slowly have longer periods of "sleep" as the body shuts down. Death should and will be peaceful. Not a terrifying gasp for air.
This is generally a time for families to gather around you and together, to support both you and other family members..
Please, please discuss this with your team and your family. Put some plans in place.
Thinking of you all,
Tammy.

K, I'll be thinking of you and hoping that you get the help and support you need. We're all here for you.