CSN Login
Members Online: 13

You are here

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

gialopez207
Posts: 1
Joined: Jan 2012

It's a very long story, but I am now taking care of my father who is in the terminal stage of Head and Neck cancer. He's about to be released from oncology and we had our first appointment with the palliative doctor last Thursday and he was no help. My dad hasn't been eating for some time, he gets his nutrition though a feeding tube, so he is very thin. under his chin and his cheeks are starting to swell along with his tonsil area, which is where his initial cancer was found. He has started bleeding from his nose and trach tube recently, and the palliative doctor said this is all normal with him so close to death, and thats about all that doctor told me. His pain is managed as of right now, though he has a constant headache that seems to bother him more that his throat. I just want to know what all to expect, I've been reading some things online but they scare the hell outta me. He refuses to have hospice come in and help, so I am his sole caretaker, when he was diagnosed a year ago his wonderful wife went through his retirement money in two months and took off to Austin, that was in june and he's been with me ever since. Please if anyone knows what I should expect in these last days, just so I'm not too freaked out when it happens, he goes back to his oncologist on the 30th, where my father wants to be referred to another palliative doctor because he DID NOT like the one we just saw, so who knows how long its going to take for that appointment so I can get some real information. Thank you so much.

Kyle Gilmore
Posts: 55
Joined: Sep 2011

I am always amazed at how much a care giver gives...its a tough road but you seem well down it.

I am not on pallative care but i do know that at my cancer clinic they offered a few nurses that was just there to answer questions, give support and point out resources available...They helped me tremendously.

From my point of view I would try to remind myself that he is terminal and ultimately your immediate path together probably ends in his death.Tough pill to swallow but it is what it is.I would seek to fortify my inner strenghth as much as possible and meditate on the fact regardless of what happens,my job is to be his source of companionship , love and strength.

Good luck

KG

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

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

tommyodavey's picture
tommyodavey
Posts: 492
Joined: Nov 2011

First off let me say how sad I am to read of you and your Dad's situation. Has your Dad talked to another doctor yet about his situation? Maybe the new one, if he likes him, can convince him of going to hospice. It really would be better for both of you and you can be there as often as need be. My father in law went to one and he was taken care of so very well. Every time we visited he praised the staff and accommodations given to him. But if your father is set on not going, it is his life. My hat is off to you and all that you have done and will do. Nothing to say about that wife of his though. He is blessed to have you there to take care of him.

I can only wish you the best outcome of a very terrible situation. May God shine his light upon you and guide you through this tough time.

Tommy

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

I would call the oncology doctors office and ask for another referal now. Don't wait.. As for hospice. Do they not come to the home? Maybe if they came to the house periodically to help out it would give you some relief. My husbands ex had hospice come to the house daily. That way they provided the health care and the family was able to enjoy time with her. They were also a help to the children as well.

Pryaing for your strength and comfort and for your father's comfort and peace.

Debbie

Hal61's picture
Hal61
Posts: 655
Joined: Dec 2009

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

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

I wish there was a way to get Hospice. This has to be rough on you and they are truly a "god-send". I don't know how my wife (and she had family to help) would have made it when her mother lived with us and we had to get Hospice to help just before she died.

Is there a reason he s=doesn't want them or is it because he doesn't want to admit his situation? They were the best solution for pain management and just overall support.

I'm sorry you are having to go through this and my thoughts and prayers are with you. Take this time to talk to your dad while you can and enjoy him as long as possible.

Denny

Jennfer39's picture
Jennfer39
Posts: 23
Joined: Nov 2011

You are on one of the most sacred paths a person can be on, and that is to help someone that you love make the journey from this life to the next.....whatever that might be. Although I dont have answers as to what will happen step by step with your dad, I was there when my dad left this world, and I will forever cherish (although it was painful) the final moments that I had with him.

It is a difficult thing to experience...and my heart goes out to you for what you will endure in the coming days.

Find a good doc.....one you can trust with your dad. And as far as hospice, continue to suggest them. Hospice made such a huge difference in my dad's quality of care, and allowed me to enjoy my time lefT with my dad. They were also a wealth of knowlwdge, and a great source for answers to my questions...which I know you have many.

BEST WISHES to you during this difficult time.

Jen

Skiffin16's picture
Skiffin16
Posts: 8286
Joined: Sep 2009

As others, I'm very sorry to hear of you and your Fathers ordeal....

Does he have any military ties or some other means of help by chance?

Others may know of some support groups locally to you, or some other type of help from the community like Viste or similar, if nothing else to help you and relieve you of some responsibility of daily chores.

Thoughts & Prayers,
John

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Hello, Gia.

What a nightmare. Sorry you have to go through it - glad your Dad has you. I have passed your name onto someone who used to visit this site - hope they get my message - they may have some useful info for you.

joannaw81
Posts: 150
Joined: Sep 2011

hello, I am truly sorry for you and your father. I admire you for even writing and describing your situation. I can't imagine how you feel although I am used to being scared for my mom all the time. She had h&n cancer twice already and now we have a scan coming up becasue she feels pain during swallowing. Somehow the thought of what if always comes to my mind and I just freak out. What I can say is pray to God He will get you and your father through this. We are all with you as well. Stay strong....

Jan Trinks's picture
Jan Trinks
Posts: 477
Joined: Apr 2009

So sorry you're going thru all this but you will get thru it! Just from reading your post and I don't know how you'd do this but somehow your dad needs to understand you need some help. Since he refuses for hospice to come in I would still encourage you to contact hospice and tell the situation and maybe they'll have some ways they can still help you. When my brother was under hospice care we had a CNA that came 3/week for bathing and such and then we had two caregivers (we hired the caregivers on our own) that helped with us daily. Then when my brother got stable and hospice dismissed him since he was a vet he had the home care from the VA. That was a wonderful experience; so if your dad happens to be a vet you may be able to get some help there. It does sound as if you need to find a different pallative doctor for sure. Good luck; I know how hard it can be; we were just so blessed to have good experiences. Will keep you and your dad in my prayers.

Jan

Jamie_Ann's picture
Jamie_Ann
Posts: 35
Joined: Apr 2011

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.

Hal61's picture
Hal61
Posts: 655
Joined: Dec 2009

Hi Jamie Ann, thanks for your post. It sounds like your dad passed with a minimum of discomfort, with your support and hospice care. As a survivor, I appreciate the opportunity to learn something of the progression of terminal cancer. You didn't mention anything about your own situation, other than you were diagnosed in April of last year. I hope your situation was treatable, and you are doing well. If there is anything we can do for you, or you need to talk to people in and around the boat you're in, please post here.

best, Hal

RayandLisa
Posts: 4
Joined: Aug 2012

My 85 year old father Ray was just diagnosed with Lymph/HNC August 15, 2012. I am his primary caregiver. We will be finding out in the morning what the results of his PET/CT Scans will reveal in order to diagnose the stage and/or treatment options. He had a total laryngectomee due to cancer of the larynx in 1992 so he has been cancer free 20 years. Needless to say, it was still a surprise to learn of his new diagnosis which was discovered during his annual carotid artery testing. I have turned to several agencies for advice in advance so that I can concentrate on being his daughter in addition to being his his caregiver while emotionally and physically preparing myself for those days when I am unable to function or assist him to my fullest capabilities. Noone can do so until he is in a state of disfunction. I am quite unprepared for what is to come and so far am having great difficulty accepting the situation at hand. I too am the most scared I have ever been in my life but I find great comfort in this network of advice, experience and support. Noone is alone here. Navigating through whether or not to get a second opinion or whether following through with treatment is a wise decision when it may or may not be helpful in providing and extension or quality of life are my primary concerns. As well as concerning myself with what level of suffering he will experience. Everyone's journey is different. What is next?

ToBeGolden's picture
ToBeGolden
Posts: 695
Joined: Aug 2010

A thank you to everyone who contributed to this most informative thread. I've always said that the caregiver(s) suffer as much as the patient. Rick.

Subscribe to Comments for "Help me with my father's terminal Head and Neck cancer please"