Help me with my father's terminal Head and Neck cancer please

longtermsurvivor said:

I'm sorry that a situation
I'm sorry that a situation as hard as this brought you to this board. You must be a very strong person. Is your father still capable of any self-care, or has all of it fallen onto you? Does he take in anything by mouth, or is he totally dependent on the feeding tube? Is he able to stand/walk without assistance? Has he had any recent lab work?

The questions seem limitless, I realize. It is hard to know what to advise you not knowing more, though. Except to say; you somehow have to survive this yourself. A very hard task under the current circumstances. Is there anyone else to help out?

My best to you.

Pat

Hal61 said:

Your father, our fathers, our selves
I want to thank you from all on the board for posting here in this very difficult time.
We don’t get many posts from people in your situation, and I wish we did, so I could offer you more information than what people have already mentioned. This is a “survivor” board, so I think that many of our brothers and sisters have drifted away when faced with a terminal diagnosis. We should do more to make them feel welcome.

Hospitals also, are charged to cure at all costs, and that’s why hospice care can be so helpful, as it exists to guide and support people to the end of this life. Our culture is generally in denial concerning death, so we have few institutions to help. Your palliative doctor should be the one to give you details on your father’s progression in his last days. The dumb*** who told you your father’s symptoms were normal, and left it at that, doesn’t understand his job--or more likely understands it only as a job. Get one who does as soon as possible.

You must be terrified. I would be. As daunting as it may be, try to value this time. Singer/writer Warren Zevon appeared on Letterman, terminal with mesothelioma, and when asked by Dave if he had any advice for people he simply advised that we all enjoy every bite of that sandwich.

So I hope you can find time and space as you continue to care for your father to do that, appreciate even this time with him. One other person who did post on this board in your role, reminded us that hearing is usually the last sense to leave us. So remember you can continue to talk to your dad, and he may well hear you.

Please post here again, whenever you are able, and let us know your fathers progression so next time we may be more helpful. Though your burden is a heavy one, a sole caretaker like you is all your father, or any of us, need.

Peace to you and your dad,

Hal

Jamie_Ann said:

Hope this helps...
I too was a caregiver for my father through his battle with HNC. His situation is probably different than your fathers in that he made it through traditional treatment with a clean PET 4 months out. It was about 6 months after that at a repeat PET that 2 chest lymph nodes showed metastasis..no surgical or radiation option (due to location). He opted not to continue with palliative chemo. He lived a pretty normal life up until about 3 weeks before he passed. At that point, we were lucky that he was willing to accept Hospice care but setting it up took almost 2 weeks. In my fathers case, during those last few weeks, we noticed a decrease in appetite, an increase in sleeping, and he would cough up blood tinged mucus. However, when he was awake, he was aware and could carry on normal conversation. His pain too was controlled pretty well by medications and he rarely conplained of anything (other than the occasional episode of getting winded walking to the bathroom). As time went on, he became more stationary. We would bring food and Boost in to him instead of sitting at the dinner table. He would need assistance getting to the bathroom...those kinds of things. He experienced liver failure 4 days before he passed and due to the swollen liver pressing on his bladder, he required catherization to pass urine. By then, hospice was in place and took care of that for us. They also began using a combination of fentanyl patches/liquid morphine to control pain, mostly from the liver failure. I was with him continuously for the last 24 hours, and while I could give you all the physical details, I will just say that he seemed very peaceful and pain free. He in no way gave any indications to the contrary and was still waking and responding up until about 5 hours before he passed. One thing I would caution you about...everyone handles the thought of dying differently (and it differs from day to day even in the same person). For the most part, I thought my dad handled it well but there were days that he was very angry or emotional. Please be prepared for the range of emotions he will go through. We opted to take a supportive role rather than "forcing" things on him. If he wanted his Boost, we got it but if not, we didn't harp on him about it. Make sure you have a support system in place that can relieve you for a "sanity break". You can not help him if you are not taking care of yourself, mentally and physically. Even if he will not agree to hospice care, call them anyway. They can provide you with information and point you in the right direction to be able to figure out what you need to do to help him (and in many cases, to help yourself through this).

We lost my father 9-22-09 and I was formally diagnosed with HNC on 4-10-11 so unfortunately I have been on both sides of the fence with this beast. I will pray for you and your father.