Hello all,

I have not been on the forum in awhile but just had some questions. My Father is currently in the hospital and doctors have pretty much given us the survival time to be 3 weeks.

In Summary my father was first diagnosed with oral cancer in 8/03 with squamous cell carcinoma in the left cheek. At that time he was diagnosed with stage II. He had a radical neck dissection with and 30 Rad. Reoccurrence in his throat in 7/04 treated with cisplatin, Iressa and 30 Rad. Area that was treated came out clear in 11/04 but cancer had spread to the right side of his mouth. Throat swelled up and trach was placed in. He was in ICU for 2 weeks. Scans in 12/04 showed that the cancer had now spread to the skin of is chest, a lymph node in the lungs and the base of the skull. At this point the docs had estimated a month or so.

The doctors said it was not

Hi Swati,
I'm so sorry to hear about your father. It must be quite a load for him to handle to be told the cancer has returned again. Not to mention the effect it must have on you as a caregiver. I don't hae the knowledge needed to answer your question but I wanted to wish you well and get your post back to the top.
Minnie

Swati,
I am so sorry to hear your latest news. It is the time to consult with the local hospice people to find out what options you have to make your father as comfortable as possible. They do an exceptionally good job at pain management.

If you can find a window of opportunity to find out his wishes you should. Did he fill out advanced directives?

Swati:
I do not know your families religious beliefs, but as for me I believe that God has a plan for all of us and if it is in God's plan to call your father home let it be without suffering. You and your family are in my prayers, God Bless You.
Darrell

Swati,
It must be so hard to know which way to go at this point. I know what we have been thru and I am not sure how much more Dan was do as far as invasive surgerys and treatments if there was no sure answer. Know that you and your family are in my prayers and I agree with Darrell that God definitely has a plan for us all. It doesn't mean that I don't get very scared and sad, but He always helps me during the darkest times.
Take care and God bless,
Debbie

Swati, was sorry to read of your Dad's problems. I pray you and he and your family are comforted and that the Lord cares for you all during this very difficult time.

Swati,

I am so sorry to read the latest news about your father. I wouldn't presume to tell you what to do, but in the hope that it might help you with your decision, I can offer a few insights from my experience with my daughter Heather. The path she followed with her cancer was somewhat different than your Dad's, but I do see some similarities, so maybe some of what I say will be of some help.

Heather was only 28 when she was diagnosed with SCC of the base of the tongue. She and her husband had a 6 year old daughter and they had just bought their first house, so she had a lot to live for. She was a very strong person and she fought the disease for nearly 14 months with surgery, radiation and chemo.

She was first diagnosed in August 2002. The recurrence was diagnosed in March 2003 and by May her doctors had given up on a cure. They recommended chemo in the hope it would shrink the tumors and give her a little more time, but none of them expected her to survive long. Her condition was severe and she spent 11 weeks in the hospital from early April through late June. Against all odds, she was able to leave the hospital and come home. We set up a hospital bed for her in my living room and a nurse came in once a week to check her vital signs and make sure we were doing everything right.

Heather had severe lockjaw, a tracheostomy, was fed by IV because her digestive system had shut down, was on a constant morphine drip (which only controlled part of the pain) and she was partially paralyzed because the tumor was destroying the vertebrae in her neck. She couldn't talk because of the trach and because of the paralysis, she needed help to do EVERYTHING. The cancer had eaten away a large portion of her neck. She had 2 huge, gaping holes that drained constantly. Even with all this, she kept fighting, but every chemo treatment weakened her more and when the paralysis started to spread, she finally could take no more.

Letting her go was the hardest thing I have ever done. I wanted desperately to find a cure, but in my heart, I knew the doctors were right and there was nothing more that could be done. She was so weak and in so much pain that she eventually couldn't even get out of bed to use the bedside commode. We had to resort to adult diapers until she finally let the nurse put in a catheter. She had no quality of life. The only way to keep the pain at bay was to keep her sedated. She couldn't even make an effort to talk to her husband or daughter. She had used a write-on wipe-off board to communicate, but in the last couple weeks, she had stopped using that also. She was in a world of pain, both physically and emotionally.

Once she decided to stop fighting, she lasted only a short time. Her spirit had kept her going, but her body was worn out, so it didn't take long.

I agree with Gary that it is time to call in hospice. Maybe they can help manage your Dad's pain better and they can help you to cope. I wish I could offer you hope for a miracle, and I'm sorry that I can't. Only your Dad can decide if he is ready to stop fighting, but you can let him know that you support his decision, no matter what. If he improves enough to continue chemo or some other treatment, that would be wonderful, but you need to be prepared for the fact that he probably won't. Hospice can help your whole family to deal with this. We should have had hospice come in earlier, but Heather didn't want them. I will be forever grateful that we did finally call them. It was only because the hospice nurse was here that I was able to have one last communication with my daughter.

I can't tell you how sorry I am that you and your family have to go through this and I hope that in some small way, I have been able to help.

Rosie

Swati, all the advice you have been given is excellent. I would add that if you can do it, it might be a great comfort to your father to tell him that it is okay to let go. Different circumstances entirely with my mom, except she too, was kept doped up because of the pain, but when my dad and I finally realized that she would not get better and was fighting only for us, we both told her it was okay to stop, and other personally meaningful things, and she died within hours. We were very sad, but also glad that her terrible battle had finally ended. I felt better that I was perhaps able to set her mind at ease somewhat by letting her know that I would be okay. I am not sure this makes any sense, but it did help our family. You and your family are in my prayers.

Swati, you are in my thoughts and prayers, I am so sorry to hear this news, I will pray for peace for your Dad. God Bless You, Love, Carol

Swati,

Ditto what Joanna said. The hospice people said sometimes the patient needs to hear from their loved ones that it is okay for them to let go. Even through their pain, they try to hold on for the sake of their family. Make no mistake, it will be one of the hardest things you ever do, but to tell your Dad that it is okay to let go may be the most loving thing you can do for him.

Rosie

swati,so sad to hear your sad news, my thoughts and prayers are with you as you struggle inyour hour of need god bless and take care maz

Swati,
I am so sad to hear the news about your father and agree with everything said here about hospice. They were wonderful in taking care of my father and will be there to help you and your children both during and after he is gone. My heart goes out to you at this time.

Take care,
Eileen

Swati,

I am so sorry to hear the news about your father. I can not imagine how difficult of a time this is for your entire family.

I vividly remember hearing the doctor tell me my mother had 3-4 weeks to live. She had battled ovarian cancer for about a year and through both surgeries, they removed about 40 lbs of tumors from her each time. The last surgery they also did an ileostomy. I remember going to Virginia and putting her on the plane to come to my home in Dallas to live the remainder of her life. At this point she had multiple brain tumors also. I just knew there had to be some options available but she insisted no more treatment. We went to the medical school here that also had trained her doctor in Virginia. He personally called and got her into the same program he had participated in.

Through the intial visits to get her meds sorted out and such, we reached a point that they believed she had a week or two left UNLESS she would let them treat the brain tumors with radiation. She told me on the way to the doctor that she would not agree to this under any circumstances. This was the longest ride in my life and my mind was racing. When the doctor looked her in the eye and said she would live a few more days without the radation, she jumped up and said..."Well then, what are we waiting for?". I was shocked but we started in 3 days. She pretty much stayed in bed from the 5th treatment on (7 months later). All in all, she lived about 9 months which was way beyond any expectations anyone had.

My mother was fortunate in that she communicated her wishes. I also remember how special it was the last few days. I only wished she would have agreed to hospice care earlier. Before we could get her moved over to hospice, she passed away. We had home health care and they used mostly their hospice staff to treat her, though, so it worked out fine. We had access to many highly trained and qualified people that helped us process things much easier. The pain management doctor was the greatest, although my mother insisted on minimal pain meds so she could enjoy the rest of her life. During her last month we even took her to the Bahamas because she wanted to see the ocean and we got her a 5th floor ocean view room with a balcony.

I know how tough this must be and I wish I had more advice for you but I don't. I only wish you the best and that you may have the utmost peace and comfort through this unfortunate time. Feel free to email me anytime.

Ed

Swati

Not going to tell you what to do, but as some others have stated hospice is a great source. They will help you cope as much as your father. My dad had bladder cancer which keep coming back, I would pray not now, not now Lord I need him now. In 2003 the Dr. told us 6 months, and a very painful 6 months ahead, my prayers changed. I realized I was praying for me, not for what was best for my dad. Don't get me wrong it was pure HELL, but I prayed no more pain plain and simple no more. My prayers were answered, dad pasted 2 months after the Dr. gave us the 6 months. He woke me up 2 days before by taking the his loved ones that had gone on before, it would have freaked me out, but the hospice people had told me this could happen, so we knew some signs to look for. We gathered around him, let him know it was ok, let go we would be ok he had worked so long and so in tune with what he believed we wanted, that he had to hear this before he would let go. It's so-----hard but I would not change a thing. I had stage IV oral cancer and only hope when my time comes I will leave as he did. Hospice is great for many reasons. God bless you and your family, you will be in my prayers


Joan

Thank you all for your help, you have all offered some really great advice and insight. We have set up an in-home hospice for my father, because being at home has been really important to him. I must say at first I had my reservations about what hospice exactly is, but they have been nothing but helpful, understand and at our service. I am very very impressed with the hospice care we are getting.

I guess this is all so hard to swallow sometimes because after my father's 2nd treatment in November, his CT and MRI scans were clear.Since dec this has just been a whirlwind. Rosie, I am so sorry to hear about your daughter, my heart goes out to you and your family. Your daughter's experience is actually quite similar to my father's. I think the hardest part is not really knowing what is going on in my father's mind. We have actually tried to talk to him about how feels, I don't even know how to begin the conversation about telling him it is ok to let go.
However I know it is something my family will have say sometime soon.

Uptown, I am happy your mother was able to communicate her last wishes I know how important that is. Joan I know what you mean, sometimes I wonder if my hopes and prayers are actually more selfish then for his own good. For example last week my father spiked a fever while he was at the hospital and the dilemma to give him antibiotics arose. I never thought we would actually be contemplating whether or not to give him antibiotics. In the doctors opinion, we were just going to prolong his misery. However, in my heart I could not make the decision to not give it to him. I told the docs to write him up a prescription. I'm not sure if the decision was selfish or not. At the time I could not bring my self to let him go, in a situation where I had to make the decision. At this point I'm not even sure if a situation like that happens again, where he has an infection if we should even try and give him antibiotics or not.

Thank you again, everyone for you insight and hopes and prayers, my family and I really appreciate it.

Swati,

I am so sorry that you have to deal with so much during a time that is already difficult enough. As odd as it sounds, you will know when it is time to make a different decision than what you have made in the past. Sit by your father's side, hold his hand and just tell him how much you love him and how you will do anything for him, how you wish he didn't have to suffer right now. Tell him that there is nothing wrong with dieing and that any time he is ready to go, you are okay with it. Tell him that selfishly you wish he could stay in this life forever but you understand how this disease has taken such a toll on his body. Once you start, the words (and the tears) will flow freely. You will be processing a lot of your feelings while this conversation is taking place, too.

God bless you and I am truly sorry you are going through this.

Ed

Swati,
My heart goes out to you, my Dad is in hospital at this time, unikely to come home again. (not OC) But my Dad is now becoming more confused than ever now he is not in his own home, he knows who his immediate famiy are but he thinks he's at home, upstairs in bed. Wish I could hold a conversation with him but his short term memory is now so bad that this is impossible.
So may we all find the way to deal with this and may we all find a special peace..
Sunshine...love and hugs
Helen