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Cindy,
Does he have an infectious disease Specialist working with him?
My hubby had the same thing , went in for dehydration and got a major infection. My worst moment came when I overheard his Doc saying to his colleague " I hope you can help him, he`s a nice guy ". Gulp !
I used to take beach towels into the hospital because he would sweat buckets throughout the night and, as the nurses could not get him dry quickly enough we would average 6 towels a night just to keep him comfortable.
Hopefully they will send him home and have home care come in to take care of him, you just cannot get him out of that hospital quickly enough.
We used to get Pete`s anti-biotic cocktail delivered, usually 6 at a time, they looked like balls or balloons and administer it through his port.
I know this is a really hard time for you, I have been where you are .
We will be thinking of you both and sending the best of wishes your way.
It won`t be too long until you will be telling some other board member how you coped way back when.
Take Care
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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Cindy,

Hang in there. Crying is good. People have told me that it is good to have that release. Otherwise, you could get worse emotionally! That is good you dont cry in front of him. I have cried in front of my mother, the day the doctor told me and my family she had less than a year to live. I couldnt help it and then it made my mother cry. Since then, I try very hard NOT to cry in front of her. It takes strength and Cindy, I know how hard that is to hold back the tears. I break down crying every day as well. But that is how I deal with it.

How is your husband's infection? I hope he is doing better. Please Cindy, try to take care of yourself. IT is very hard on the caretaker, as you know and it is important to take care of you also. I am sorry you had a rough day today, but please remember, that I, and the wonderful people in this forum are here to help you through this. Please let e know how he is doing as I am concerned and praying for him and you.

Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Karen,

Thank you for the advice regarding the feeding tube. I am happy to hear that you did not need the tube. THat is great. But my mom will not agree and also she is being stubborn about getting in home health care. What is the difference between hospice and nursing in home? When is it considered "time" for hospice? My mom does not like the idea of hospice or anyone in the home. BUt my dad is not coping very well. My mom cant eat or speak and he is getting tired. I suggested it and now, I believe I have to insist on it for my mom and dad. Friends and family have discussed hospice with me and I am not sure exactly what the difference is. Thanks again And I will pray for you and your family Karen. God Bless
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Stephany,

Magic Mouthwash is a combination mixed by a pharmacist. There are a few variations, but it can include lidocaine, morphine, maalox, benedryl and/or nystatin. The idea is to numb the mouth so one can eat or drink. The nystatin would be added if there is a problem with thrush, but I don't think it is usually part of the mixture.

Does your mom's doctor know she isn't eating? If so, he shouldn't have a problem prescribing it for her. If he doesn't know, he needs to be told ASAP. He should be the one telling your mom she needs a PEG tube. It shouldn't even be on your shoulders to have to talk her into it. The pain management doc should know what magic mouthwash is and if it would be appropriate for your mom. I hope they soon get all the tests done and get some treatment started.

Home health care would be used while your mom is undergoing some kind of curative treatment. If it is at the point that she is receiving palliative treatment or no treatment at all, then it is time for hospice. Basically, when the doctors have said there is nothing more they can do to help your mom, then it is time to call hospice. These people are generally experts in pain control and their main goal would be to keep your mom as comfortable and pain free as possible. They strive to allow the patient to retain their dignity. They can help your entire family to prepare for the inevitable. If your mom is going to receive any treatment that is not considered palliative, she would not be eligible for hospice care yet.

Take care,
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie,

Thank you for the advice. I appreciate it. I suggested what you suggested in your message to me. Thank you so much Rosie. God Bless you
STephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Rosie,

How do you cope? I am just wondering because the loss of someone has been forefront on my mind this week.

My husband developed neutropenic fever and was suffering from an infection and has been in the hospital all this week. I have worried all week that something dreadful was going to happen. Today luck came to the rescue and raised his count considerably. But I cannot help the fact that the last few days, everytime I go to the hospital (which is early every morning) that I am going to arrive to discover the most dreadful news.

I know that if he does not make it, (no matter how positive I am I know that some people don't) that it will take an army to get me out of bed much less to rejoin the human race.

I hope that it doesn't bother you that I ask. If it does you are certainly under no obligation to answer. It is just that the thought of how to move on after has been on my mind a lot this week and I am not really sure that I would have the strength to continue.

Thanks,
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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Cindy,

I don't quite know how to answer your question. I guess one would say I am coping, but sometimes I'm not too sure that is correct. I read your other post about not cleaning your house, doing your laundry, etc. Heather has been gone almost 1 1/2 years now and my house still isn't cleaned thoroughly. I flit from one chore to another and never get anything fully done. I can't focus on one thing long enough to complete it. I can't sleep. I eat too much. I tried an antidepressant and although it did help stop the constant crying, it didn't help with anything else, so I stopped taking it.

I think if I went back to work, it would help because I would have something to focus on, but I don't have the ambition to go job-hunting. It is really bad because I wouldn't even have to go far to get a job. There are 3 places I know I could get a job almost right away. In fact, I was just told a couple days ago to get my application in at one of them. The woman pretty much assured me of a job. Do you think I have put in the app? Heck no! I'm still waffling, trying to justify staying at home longer, when I know there is no justification for it. I have no children at home. I only watch Heather's daughter 2 nights a week and help with my other grandchildren occasionally. I haven't gone back to selling on ebay, although my house is full of stuff that needs to be sold. There is absolutely no reason for me not to work..........but here I sit. I know my husband wants me to get something, at least part-time, but he isn't pushing and I am taking advantage of him and I know it, yet I do it anyway. I know what I need to do. I just can't make myself do it.

Well, I bet that isn't what you wanted to hear, but there you have it. I'm not really coping, yet if you ask 90% of the people who know me, they will tell you I am doing fine. I guess I hide it well. In fact, when I asked the doctor for an antidepressant, he was surprised that I thought i needed one. And maybe he was right. Maybe that isn't what I need. I do know I need something. I'm just not sure what that something is.

Getting back to you, I believe you said you have 2 young children and you are also going to school. If something should happen and your husband doesn't survive this, I think you will find that these 2 things, the children especially, will provide the motivation that will keep you going. You very likely will have trouble getting out of bed for awhile but, for your children's sake, you will find a way to move past it and get on with life. It will not be easy and it will not happen quickly, but I think you will find that your love for your children will be your lifeline. And, although you may take a break from school for awhile, I think that having that structure to return to will be very good for you.

I have a friend who lost her husband in a car accident years ago. She was going through life in a daze, doing only what was necessary. Then one night as she was bringing pizza home for dinner for the umpteenth time that month, she realized what her behavior was doing to their 4 children. They needed more from her than take-out food and basic care. They needed her love and attention more than ever because they were suffering, too. And her neglect of their emotional state was creating a time-bomb within the family. That was what snapped her out of her ennui and she was able to start caring and functioning again. That is why I think it will be your children that will get you through it if the worst does happen.

I can tell you that the horrific pain of the first months does lessen over time. Gradually, you will realize that the sharp edge of pain has faded a little and moved to the background instead of being front and center all the time.

But right now, you have to try to stop thinking of the what-ifs and concentrate on the here and now. Many, many people have a terrible time during their treatment, but they do get better. The treatment for oral cancer is grueling, but it is survivable. Yes, not everyone survives, but you have no way of knowing if your husband will be one of those that don't. Try not to put the cart before the horse. Take a deep breath, take it one day at a time and you will get through this. And while I may be having some trouble coping now, during Heather's treatment, I found strengths I never knew I had. You will find strength, too. And no matter what the outcome, you will be a stronger person in the end.

Take care,
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie, I have sent you messages before about your strength and how hard it must have been with Heather. But, I think it would be a good idea to go back to work, even if part time. I find that work is a great distraction for me. It gets my mind off of the sadness, suffering of my mother, and fear....IT makes me feel better. I encourage you to do something, anything that can help you, even if a hobby that you enjoy.

CIndy, as I told you in a private message, the treatment is survivable although hard. Please try to stay in school, if you can handle it. It is a good distraction for you as well. It will be worth it in the long run. Hang in there Cindy and I agree with Rosie, that you will be stronger through this. Each day that goes by, I find myself handling things iwth my mom that I thought I could never handle. The thought of losing my mom is the hardest thing I have ever had to deal with. She is my best friend and has always been tehre for me. Now, she cant talk, eat and is in so much pain, my heart aches all day long for her, wishiing I could do something. The only relief I seem to get is doing things i enjoy and work, they are great distractions.

I will pray for you and Rosie. I know this is not easy for any of us in this forum.

God Bless
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Rosie, I have been old enough on this forum to know your story with Heather. I agree with Stephany that going back to work can distract you from your sadness, at least during the daytime. I was in severe depression after treatment because I had nothing to do and I was once a workaholic. When I resumed my previous job, even though I had a tough time coping with all the stress, my depression gradually disappeared. I have worked for almost 3 years now to the full and the thought of my illness has gradually decreased. Because of the radical education reform here, my job becomes more stressful. At this point, I am thinking of early retirement. But I still have a major consideration: how am I going to 'kill' my time at home? So Rosie, if you are given a chance to take up a job that you like, go ahead. Time is the best medicine and I think you will slowly recover from your wound.My best wishes to you and Stephany.

Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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And I see that none of us sleeps much either. :-)

Thank you Rosie for sharing with me. I know that sometimes it seems that I want to talk about certain things and if I talk to the wrong people it is always interpreted poorly.

Knowing that this place is here regardless of how virtual it is has been more helpful than any pill. I have such trouble sorting out all of the emotions that are overwhelming me and I am afraid that sometimes it may sound like I am being selfish etc. That is never my intention but what is weighing the most on me is this.....

My life is my family. The 4 of us are great together, not perfect, but great. My husband is my best friend, he is the person I want to run to and have hold me when I hurt. The one who rubs my head and tells me that everything will be ok. The one I can share my feelings with no matter how stupid they may seem.

But for now, that is on hold and he cannot be there like that and I am lost without that piece of my life.

You are right about my children. They are the reason that I get up in the morning now. And I know they are suffering too. And I have no answers. But I hug them a lot and I talk to them and we do things together and we are still a great family.

I know that I should only look at the here and now and not do the cart and horse thing but sometimes, when I am here alone, and the kids are sleeping and Harry is in the hospital, I look around my bedroom when I lay down at night and I see him everywhere. His things, his places and such and for moments, no matter how hard I try to block it out, I get scared that one day my being alone in our bed could be permanent.

I am scared and I don't know if that will ever go away.

Rosie, You are a wonderful person to share with me and I am grateful that you are willing. And what you said was exactly what I wanted to know. Not how others think you are but how you know you are. I cannot say that I am coping either and I am not really sure what coping means. But I am moving from day to day the best that I can most days anyway. Thanks again for your candor.

Stephany, You are right about the school thing. In a way it is one of the few "No Cancer" things left in my life. And I cling to it, although I have to say that Contracts is exceptionally boring. :-)

School is my last vestige of structure and if I lost that I dare say I would fall completely apart.

I cried a river tonight and I do not feel relieved, just exhausted. So I am off to push my head to my pillow so that I can stare at the ceiling for a while. Then it is up early, kids off to school, and onward to the hospital.

A Day In The Life.......

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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