We spoke to doctor about the treatment options. He stated the best option is surgery 6 weeks of radiation and chemo. However he doesn't believe Rich is healthy enough for the surgery. It would involve removing most of the front of his tongue and removing lymph nodes from both sides of his neck. He would have a trach and feeding tube. With all of his other health problems Rich and I discussed it and feel its too much. We decided on comfort mesures and hospice

Julie and Rich- that's a very courageous [and very tough] decision. For what it's worth, my 66+ yrs. of life experience has taught me that decisions between partners, which are made with love and honesty and genuine caring about each other, are ultimately the right ones. Please post when you need support. Amy in the OZarks

Julie,

I have read all your posts and I am really sad that this decision has been agreed to and it's painful for me to understand it but he does have a lot of issues. I'm at a loss for words other than I hope all will go as well as possible.

Julie,

Just wanted to say we are all thinking of you both. Making decisions can be the hardest part of having Cancer. We all have to do what is best for our selves after we have done all the research to find the answers we need.

Take care and know you can always come here for help and support.

Diane

Dear Julie & Rich

If we remember
All our good qualities
And all the good things
We have done,
Then we will receive
Tremendous inner strength and joy.


My thoughts and prayers are with you. Petey

Julie and Rich, my thoughts and prayers go out to both of you......God Bless, Carol

Dear Julie: Alan came to the same conclusions. We too are dealing one day at a time. big Hugs
Marlene

We spoke to the doctor about comfort measures and hospice when necessary. I was really hoping he would say it was too early for hospice. He didn't. Our first visit with hospice will be Tuesday. He prescribed Vicodin 1-2 tabs every for hours for pain. Before he didn't want him taking anymore than 1 every eight hours because of his liver problems. He gave him lidocaine gel to numb his mouth and when Rich spoke about stopping smoking the doctor said "really whats the point" That was hard to take but can see his point what make himself miserable attempting to quit. It just made the end sound much closer than I was ready for. Thanks for the support and letting me vent.

Dear Julie and Rich

I am so sorry for your predicament. There are little or no words to say. I have thought about the possibility that I could get to this point one day.

Everyone must draw their own conclusions and make their own decisions. I have been reading about "The Hemlock Society". If and when your situation ever reveals itself to me, I know that I will not go through any undo suffering.

Praying for you. Petey

Home Page http://www.FinalExit.org/dhumphry

Dear Julie
reading your post makes me realise how close Rob came to being in Rich's situation.It also makes me even more certain that anyone who continues to abuse their body when they have been given a second chance to get it right,really isn't worthy of the time and money invested in them by everyone involved in their treatment.My thoughts and prayers are with you as i sit here and think there but for the grace of god go anyone of us who care for some one with this wretched disease

x

JulieKay
Tuff decisions, only you 2 can make. Cancer battles are fought in many different ways, You both are very brave. Good Luck

Thought I would post an update on Rich. The hospice nurse is coming out once a week. He is using more medication to control his pain, but is alert and still able to do as he wishes. He is recieving MS contin 30mg twice a day and Roxanol 10 mg as needed every 2-4 hours plus neurontine for nerve pain and lidocine gel for the mouth ulcer. He is more irritable and has constipation and sometimes I have problems not taking what he says to heart. From what I have read here about others battles with this disease I really fear for the future but am glad we decided on no treatment other than comfort measure.

DEar Julie, Hope having the Hospice nurse come in only once a week is enough for you. Are you getting rest yourself? Is Rich able to do all of his meds, etc. on his own or are you responsible for that? He is likely to get more difficult to deal with if the pain meds. are increased. His chosen path is not an easy one, but I am just as concerned about you. Amy in the Ozarks

Julie, I work in hospice and we also have volunteers for family respite, spiritual counselors, and social workers who come to the home along with the nurse. The philosophy is to treat the needs of the entire family so please make sure you are taking care of yourself too. Amy has been there.

The medication he is on is pretty standard and will be increased as needed. If he is having problems with constipation let them know that and get suggestions. It's a side effect of the pain meds so they're used to dealing with it.
Regards JoAnne

At this point once a week visits from the nurse is all Rich will accept. We have had 3 years of his disablity so we are pretty use to handling his personal care. I'm also a nurse so he thinks I can handle everything. I set up his meds once a week though he keeps his pain meds at his bedside. I believe this helps him feel more in control and that is imporant. He is still very much alert and orientated so I have no problems leaving him by himself so I can get out. I know things will probably get much worse but right now it ain't bad.

Dear Julie, Glad to hear you are a nurse-nurses know how important it is to take care of themselves too- right? :rolleyes: {I'm grinning, as my daughter and DIL are both nurses] Please know that we are here should the "nurse" hat come off and Julie just wants to talk. Amy in the Ozarks

Hi Julie, as one nurse to another - it's tough to be a caregiver when the patient is someone you love. I found that everyone assumed I already knew everything and/or would just handle all the care whether I was familiar with it or not. First and foremost you are Rich's wife and you have your own feelings to deal with about what is happening. On the other hand, you do have the background to ask questions and get your the information you need.

Many, many people reminded to take care of myself and one day I finally decided to listen. Please let me know if there is anything I can do to help or if you just want to vent.

If Rich will only accept weekly visits that makes sense. I think you're right about giving him as much control for as long as possible and taking your cues from how the situation is going. Hospice is there to support, not to take over your lives.

Do you have a good support network? Glad to hear that you're able to get out a little bit.
Regards JoAnne

Oh gosh you are so right about it being tougher when it is someone you love, and people just assuming you know what is going on. I am now reluctant to tell doctors and others that I am a nurse. I worked for 18 years in a nursing home. The only cancer I have dealt with was in the final stages. Also Rich responds so differntly when another nurse tells him something than when I tell him the same thing. With me I'm just his wife telling him and when another nurse tells him then he listens

Dear Julie, hard as it will be, you may just have to sit down with Rich and explain to him what this journey is doing to you as well. See if you can get him to talk to you about his expectations of the role you are to play here. [And you really need to be honest with yourself about your OWN expections of the role you will play.] From my experience with final stage cancer- as a non- nurse but a wife- it was a demanding, harrowing, heart wrentching ordeal. I honestly don't believe you can be both wife and nurse[professional caregiver] in this situation. It is too much to ask; there will be times when all you want to do is hold his hand yet you should be giving meds., taking vitals, charting, changing sheets and dressings, etc.,etc. You have time to think about this as Rich is doing pretty well right now. Amy in the Ozarks

Hi Julie
as yet another nurse i have to say i agree with all the above.When Rob went into the hospice,i just found myself doing everything for him.The staff would bring in his meds and leave them with me i changed his dressings,called the staff when he needed medication,explained everything the Doctors told us,dealt with relatives and visitors,and as one doctor said to me i went into nursing mode.

This brought about two problems.Firstly the staff were not aware of some of Robs problems mostly to do with mouth care and skin breakdown and his mental state,and secondly if i advised him to do something he often refused.
I got into the habit of doing a daily report which i passed on to the nurses and if i had a problem getting him to "behave" i would speak to his key worker nurse Jane.She would then do his dressing and talk to him at the same time.Jane was privy to so many private moments with Rob,i felt she knew almost as much about him as i did.

As his face broke down i also found it impossible to remain detached from my role as his wife when i did his dressing, and found myself increasingly unable to hide my heartbreak every time i saw it.The site of him undressed ready to shower made me bite holes through my lips,and although i gradually relinquished the bulk of his nursing care to the staff,he would never let anyone else wash him.
The hospice allowed me to be a wife and carer and the support given to me when i did go and try to hide my distress was brilliant.
Doing all this at home must be so very hard and i wish you all the very best.

liz

Thanks so much. It really does help to know yous understand even my situation. I really doubt Rich will ever let anyone but me do his personal care. He had problems with that when this first started 3 years ago. It took ages for him to get comfortable with even me helping him. So far there are no dressings, but I believe he will understand I can't do that as I can't bear to look in his mouth at this point. The last time I did the tears started flowing and I couldn't convince him I had something in my eye.
I should clarify I have dealt with the final stages of lung and bowel cancers never with oral cancer. And in a nursing home its a team approach. The thought of what is to come terrifies me. He has so many health problems I pray one of those take him before it gets that bad.
3 Years ago he was told he had less than one year to live, it was too early for hospice help so we had none. We both went though pure hell for about a year as we both had to become accoustomed to his new normal, his need for assistance in personal care, his refusal to return to the doctor... When this started and he was thinking about refusing treatment, I told him I could not do this alone again and if he also refused hospice I would place him in a nusing home. I just refused to watch him suffer again without the care and meds that would help. Just knowing hospice is on call is a great relief. If just weeekly visits is all he wants right now I'm fine with that as I know that can and will be changed as his condition warrents.
Thanks for your understanding. It means so much to vent to others who do get it
Julie

Juli- plese know you are both in my prayers. Keeep on posting and know many are here for you. LJ

Julie,

What a difficult journey. I will have you and your husband in my prayers.