Help with my fathers terminal head and neck cancer please

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.

On Jan 24, 2012 8:24 PM gialopez207 wrote:

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.

Love and strength to you. I am 3yrs post cancer in my right tonsil. So far so good. As for your father, at this time of his life, the most important thing is his comfort which includes pain control. Is there an Oncology nurse you can contact? I find the information the nurses have far better than anything a doctor can impart. I haven't much to say but I did want to give you some emotional support in what you are doing for your father. As for his wife... that is better left and let go of. You don't need that angst in your life. And your first concern must be for yourself. If you don't look after number one, you cannot be available to care for anyone else. So do all the right things for you first, ring around for information and assistance and good on you for what you are doing. Sincerely, Annie

Sorry to hear about your father.  Have you gotten a second opinion about what can be done?  I know before they did surgery on my husband for laryngeal cancer we were told if the cancer had spread they wouldn't do surgery.  Thankfully it hadn't spread and we are almost one year out from surgery and he is doing good other than problems with eating.  He had a feeding tube for almost a year before it was removed.  Are your using nutrition with extra calories like Ensure Plus or the store Brand? 

As far as hospice, if your father is on Medicare you should have hospice come in to help you.  Hospice is wonderful, I used it for my mother.

You need to take care of yourself because it is hard and if you don't take care of yourself, your health will suffer and you won't be able to help your father.  I hope you have other family members you can rely on and if not you can find help thru organizations that help people in your situation.  Best wishes, Sharon

I am so sorry for your father and your struggles. My husband had throat cancer which he beat only to be diagnosed three months later with sinus cancer. The nose bleeding was horrific and was two seven week radiations in one year and the chemo twice in one year. It was just too much. He fought but lost his battle last April. I would say that hospice was my savior and they managed his pain control and keep him comfortable and it was  a god sin for me. They were there 24/7 administering the meds and caring for him so I could be with him without worrying about his medical care. Sweetie... I pray the best for you and your father. Blessings.

 Breaks my heart with sadness to hear about your dad. I know that long story and how many steps to get there.

So glad that he has you as his caregiver because you truly care and are doing so well with him.

Cancer is just so sneaky and terrible. My daughter is now in remission from tongue cancer and doing so well.

I can only say that I will pray for you and your dad. Glad you are having another doctor and hope your dad likes him.

((((HUGS and PRAYERS)))

NurseNana

Even if you are not going to have hospice come into your home to help care for your dad, you should still contact them.  They can give you the information you need, help you get any medical equipment you may need, and offer support to you as well.  They have been where you are.

God bless.

 

On Jan 24, 2012 8:24 PM gialopez207 wrote:

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.

Hello; My heart goes out to you and your dad. I know it's been over 9 months since your post but I just happen to be looking for more information and support and found this. I am 22 years old and my dad is 51. My dad is also a cancer patient. A terminal cancer patient. His head and neck cancer unfortunately wasn't treated in time. But when we found out about it, he was treated aggressively and seemed to be responding to his treatment, which consisted of radio and chemo every week. Unfortunately after an apparent anti cancer response, out of no where his cancer started to spread. Doctors put a tracheotomy on him as a prevention and as I'm typing this I'm so so thankful they did. Because as of 5 months he has been only breathing thru the trach. I lived in a different state and was unaware of how much his health had deteriorated in a matter of 6 months. He lost a lot of weight and also since his cancer started to metastasize thru his lymph node and tongue and trach and down the lungs, radio was cancelled. If I remember well it's been about 2-1/2 months since his chemo was also stopped and the docs broke the news on us. That there was nothing else they could do for us. They gave us a time frame of 3-6 months. I moved to His state to visit and enjoy our time together and I rapidly saw his health taking a turn for the worse. From constant swelling to 20-35 lbs weight loss. To nose and mouth and trach bleeds. Hospice was recommended to us thru the hospital, and at the time it just didn't seem like something we needed as of that moment. Well unfortunately 2 weeks after we had turn hospice away, we had to call them to enroll. I knew I had to do something. And that was getting married, since it was post-poned due to his health. I planned an outta state wedding and flew our closest family in for my wedding. Dad was strong enough to walk me down the isle which was one of his last wishes. I got married/renewed my vows not even 3 weeks ago. I made the mistake of leaving him, and going back to my state, and everything is getting worse by the day. My dad was admitted to the hospice facility which is a wing at a very nice local hospital. It is very heartbreaking to see my dad so sick and tired. Just 2 days ago I flew back to come be with him for however long he has with us. My brother and I told him, it was ok, that we will be ok. He has fought and fought and I know he is very tired of this horrible sickness. As I type this post I'm sitting across him and taking care of him. Hospice has been so so wonderful and caring and there is just no words to express how thankful I am to them. My dad is my hero, and we are proud of him and his strength. But if there is something I can tell you, is enjoy him, but let him know and tell him, to not worry that everything will be ok. I told my dad I am so so proud of him! I love him dearly and one day when I have my kids, his legacy will go on. My dad may have just hours left to live, but he is at peace and he is in absolutely NO pain! Best regards and prayers; Liz