Hello My friends,

I can thank you enough for the advice you all have so kindly given me. Thanks to the people in here, my family obtained a second opinion from a surgeon here in LA who basically disagreed with my mom's prior doctor. Basically, he ordered a PET scan and CT scan to confirm that the cancer has in fact recurred. He thinks it has as her doctor thought so. But her doctor had told her that there was nothing that could be done. That a biopsy would break her jaw and even if cancer was confirmed, that there was nothing that could be done for her.

But, this new doctor disagreed and said that a biopsy could be performed because of the space in her jaw. And he ordered test first. Also, he said that if the cancer is back, that there is some experimental drug (dont know the name right now) that is used for lung cancer. Does anyone know the name? or anything about that drug?

Also, when is "time" for a feeding tube? My mom blends her food...IT takes a while..I help her when I am there. Then she sips a couple sips and then runs and takes her liquid morphine because of the pain. She has lost over a 100 pounds and I am worried that she should get a feeding tube. Whenever it is discussed with her, she says no. I dont want to take any dignity from her or insist on anything she doesnt want. It just seems so painful for her to try to eat. Is there a time that a PEG tube should be suggested?

Also, my mom has a fistula dripping under her chin and ulcerated lips. does anyone know of this or experienced this themselves or of a family member? Is there anything that can be done or relief? Also, is there a mouth rinse to help with the pain besides the liquid morphine?

I know I had read before about a baking soda rinse. Is that only for cleanliness? Is there something for the pain and infection in her lips/mouth?

I am just so frustrated watching my mom suffer and feeling like there is nothing I can do. She has been my best friend for so many years and I feel so helpless at times. I am doing what I can do but my mom is suffering. So, I am asking you, my friends in here if anyone knows of anything that could help and when a feeding tube is considered "necessary". thank you again
Much Love,
Stephany

I am relatively new to this life with cancer. My husband began treatments 2 weeks ago and we begin week 3 tomorrow. He has presented the worst side affects earlier than most and when we were at the radiation doctor's on Friday she said that we should consider a feeding tube this coming week.

I have talked to other survivors who had the PEG tubes and they swear, for them, that it saved their lives. My husband and I have discussed this many times. He is also not to keen about the tube but if I were you, as I have done with him, I would very strongly encourage the tube. It is not something that dangles off of you and restricts your movement or ties your down. And when she is not using it she can roll it up and hide it under her clothes. No one will even know it is there unless she tells them.

But the benefits arenumerous and life saving. She can make sure that she gets enough fluids to stay very well hydrated. Just in the last couple of days, my husband and I have discovered that hydration makes a huge difference between getting out of bed and being stuck in bed.

He has only been able to take about 1000 calories a day. This is not enough but it is all that his throat can handle. With the tube we will be able to make sure that his body stays as strong as it can so that it can fight not just the cancer but also the drugs that are trying to kill it.

I know there is a lot of controversy about the tube but it is temporary until she can eat and drink enough on her own to maintain her intake. Then they will take it out.

One survivor told me that what made it worth it for him was the stress relief he got from not having to build himself up enough strength to deal with the pain of choking down the food and water. The relief was well worth it to him.

We will get one for my husband this week, and even though he will not like it, he also knows that the benefits outweigh the detriments and he just wants to try to make it through this as best as he can.

I wish you luck with your mother. Tell her to get the tube and spend her time worrying about other things rather than eating and drinking.

100 pounds is a dangerous amount of weight loss and she is probably feeling weak because of all of the treatment. Having enough nourishment will go a long way towards improving things. You should consult with a nutritionist and have them help your mother devise a plan to make sure that she gets enough calories and fluids everyday. This is just as important in survival as the treatments themselves.

As for your other questions, I have no experience with those things so I have no other advice to offer. I wish you and your mother the best of luck!!!

Cindy

I believe that the drug they are referring to is Iressa. It is slightly beyond experimental at this point (at least for lung cancer). They are doing clinicals with Iressa for other forms of cancer as well.

See: http://www.cancer.org/docroot/NWS/c...Better_Use_of_Iressa_for_Lung_Cancer.asp

100 lbs is a huge weight loss (unless she was 4-500 lbs prior to this. I can't understand why they wouldn't insist on it - this shouldn't have to be your decision to make - that's why these doctors make the big bucks. It is to her advantage to try to continue eating orally also.

Your mother shouldn't be in pain. Patients have the right to adequate pain management - demand it. Use the pain scale to describe the pain levels to the nurses and doctors.

See: http://search.cancer.org/search?q=p...mcancer&restrict=cancer&filter=0

Hey Stephany,
Dan's ocologist ordered his feeding tube to be put in before he started his chemo/rad treatments. He started using it in the third week of treatments. He had it for 5 months and he still lost over 40 lbs. There was a period of time during treatment that he couldn't talk or even swallow water or anything. That lasted for over 6 weeks. He couldn't get enough Boost in him calorie-wise because he has a high stomach and felt full and sick with acid reflux fast. We talked to the nutritionist who prescribed Nutren 2.0 which had 500 calories a can. It was work to get 3 to 4 in him a day, but he could maintain some weight with that. The tube was no problem and he could feed in about 5 minutes. It was a lifesaver for him. May God give you and your mom strength and courage to go thru what comes next. I have read and heard encouraging things about Iressa.
God bless and take care,
Debbie

Stephany,

Please talk your mom into getting a PEG tube. IMHO, it is necessary NOW. Like Gary said, unless she was seriously overweight before, 100 lbs. is way too much to lose. She needs to get proper nutrition so she has the strength to fight this disease.

Has she tried "magic mouthwash" yet? It is a concoction mixed by a pharmacist and several OCF members have had good results with it. Also, maybe she should take her pain meds BEFORE she eats. If the magic mouthwash is used before eating, it has a numbing effect and eating isn't as painful. The PEG is still her best bet, though.

Heather never had ulcerated lips, but she did have open fistulas, one under her chin and one on the side of her neck. Unfortunately, there was not much we could do about them. At first, when the doctors thought they were the result of an infection, they packed them with sterile strips. We had to go to the doctor's at least twice weekly to have the packing changed. When the fistulas got bigger, they stopped packing them and we just tried to keep them clean. When the docs realized she had a recurrence, they said nothing could be done about the fistulas until the tumors were under control. Unfortunately, that didn't happen for Heather. If the doctors can manage to shrink your mom's tumor(s), the fistulas can be surgically corrected. I'm sorry, but I don't know of anything that can be done until then.

Rosie

stephany,
You've really got to talk your mom into the feeding tube. Even with a tube, my mom has lost 50 lbs, but without it she wouldn't be eating anything. she really didn't want it either, but i know she's glad she made the decision to get one after everything was said and done. As for the experimental drug, i agree with gary -- it could be Iressa. My mom started it about 1.5 years ago. i think several hospitals throughout the country have been using it for oral cancer pts. -- and the results have been promising. I'm glad that you went for a second opinion. I wish I could help with info about the pain and infection, but I had a real hit and miss situation on my hands when it came to that. Trying to get the meds and pain in harmony was, and still is, a work in progress. I wish you and your mom all my best. Please take care of yourself as well. It's important that you stay on top of your own well being too.
Regards,
D

Thank you Cindy, Gary, Debbie, Rose, and "D":

I cant thank you enough for the responses. My frist question is what is the "magic Mouthwash"? She does take the roxycodone, or whatever it is called, the liquid morphine. Is there something else that she could try?

My mom has lost about 100 pounds to get her down to 108. At least that much. Not quite sure exactly, but about a size 14-16 to a size 2. I did bring the feedign tube up wtih her today and she got angry at me and wrote me a note that she will manage her own health care...Something to that effect, she appreciated my concern but she is very adamant about NOT getting a tube. I feel so bad for her. But what is my role? She wrote me a note asking me NOT to harp on her. So, I imagine the best thing is to just sit back and let her make the decisions.

Rosie. My goodness. So Sorry for all you went through with your daugther. My heart pours out to you. My mom is in a very similar situation, the fistula under her chin just continues to drip constantly..with this greenish yellowish fluid. Her lips are so badly ulcerated, I feel awful.

Gary, thank you for the links regarding IRessa. I will encourage her to try Iressa if the doctor suggests it.

CIndy, I took your advice and suggested what you suggested to me to my mom..Telling her that she should have to suffer, etc...But it didnt go too well :-( She, for some reason is strongly against it.

The other question I have is that she never smiles and is basically miserable 24/7. Does anyone have any suggestions for mood enhancements?
I guess I am the daughter trying to find the "fix" which has been very hard for me. She is running more tests this week, so we will see. But both doctors feel there is a recurrance and that her tumor may have spread to her lips. Or is common to get ulcerated lips from the treatment/radiation?

Thank you again Debbie as well. I am so glad to hear that the feeding tubes have worked for your loved ones. I really appreciate you all in here so much! I will pray for you all

God Bless
Stephany

Stephany,

This is going to sound harsh and I am not recommending anything that you know in your heart won't work. I am just going to share my story with you and maybe there will be something useful.

My hard-headed, I can take care of myself, husband knew for almost 3 weeks that he had a lump on the side of his neck. He never said a word to me about it. He has never explained why but he uses the excuse that he just thought it was a swollen gland and that eventually it would just go away.

Finally, late on a friday afternoon, he asked me to look at his neck. My immediate reaction was call the doctor. I told him to insist that the doctor see him right away. He didn't.

When he finally went to see the doctor she suspected lymphoma. She sent him to an ENT. None of these appointments did he make very quickly while I was nagging and pushing him to get in sooner. The doctor would just say he didn't have an appointment for a week or so and my husband just said ok. I, on the other hand, was angry and confused. I really thought that he needed to get this thing checked out right.

He finally went to the ENT and that doctor decided he needed a CAT scan. Another week before the scan could be done, another week before the follow up appointment with the ENT for the results. Then he was sent to the lab for a fine needle aspiration. Another week for those results. Negative.

At this point the ENT is scheduling surgery to remove the lumps. My husband just goes right along and at this point I finally blew a gasket!

I told him that before he let anyone cut on his neck, he needed a second opinion. But NOOOOOOOOOOO, he said this was fine and he was scheduled. I was also at that time getting ready to go in the hospital myself for a hysterectomy.

So now weeks have passed and he is all ready to give into this surgery and I am nagging and nagging about this second opinion. Friends are saying to me that it is his health and his body and he should be able to make whatever decisions he wants. So I tried to back off. But I couldn't. I just knew that something wasn't right.

Finally I told him that he could do a second opinion or I would have the divorce papers ready for him to sign. I basically told him that I could not live with this craziness of not asking someone else what they thought.

I was extremely serious and I think that he knew it. The next day he gave in and I found another doctor. Within a week the fine needle aspiration was redone and it was cancer.

Today, when he tells people this story, he prefaces it by telling them that I saved his life. I don't know if I would say that but I just had to get it through his thick skull that sometimes logic is right and sometimes you just have to follow it like it or not.

The truth is that I would not have left him but I also would not have let it go either and he would have had to step on me and watch me go to jail for making a scene had he tried to go through with the original surgery. Would that have been the right way to handle it? I don't know but I did know that it was the wrong answer to go along without making certain of what was going on.

Since then we have constant fights. Sometimes they are vicious to the point of not speaking at all for some periods of time. But I can see this thing from a place that he cannot and I am a logical being. So if we must fight, then we must. And if he stays angry with me for a long time, then so be it. I know, like raising kids in a way, that they might profess to hate you now because you are making them do things they don't want to do, but when it is all over and they have survived and live many more years beyond the last treatment, they will know that it was my love for them that fought against them so hard just to get them to the place they always wanted to be.

I offer this because the situation you are in is a very difficult one. Only you can decided what lines you are willing to draw in the sand and how important the outcome of those divisions are. Use the doctors when you can as your backup. They are good at reinforcing what you preach. Check with the doctors to make sure that you understand the best thing to do and/or all of the options that are available. Then use those tools the best you can to guide your mother in whatever way you are comfortable.

Be aware that there are some who will never give in, never listen, and never change. If that is the case with your mother then you will have to support her the best you can. It does not mean that you can't mention it or let her know of your objections/concerns.

I wish you all the luck and tell your mother that being stuborn under most circumstances is an admirable quality, but the beast she is fighting can be even more stuborn and will take advantage of every opportunity you give it. Without enough food and water, not just in quantity but also quality, the good parts of her body are fighting like a boxer with his hands tied behind his back. She needs to fight the beast with everything she can and that includes healthy, hydrated, nourished, good cells that can beat the hell out of the bad guys.

I am praying she will listen to you.!!

Good Luck and take care of yourself.

Cindy

Cindy,

Thank you so much for your story. It has really helped me. I am also so encouraged by your story to be strong, as you are. I admire that about you. I am weaker and cry all the time and am finding this situation so difficult to deal with. The hard part is that when she asks me to back off, I feel I have to respect that. And I feel that I need to respect her wishes. But, then I am conflicted with wanting to do everything I can do from my part, which is encouraging her to get the feeding tube. It was a struggle to get the second opinion with my mom, as it was with your husband. I am happy to hear that he received that second opinion.

How is your husband doing now? How are dealing with everything and your recent surgery? I hope youa re doing ok. Did your husband's cancer start in the tongue or in the lymph node in his neck? I hope he is doing ok.

What you said is so true about needing the nutrition to fight this disease. But my mom is stubborn as you say. I admire your strength Cindy. I hope I can learn from you and be stronger.

Thank you so much and please let me know if you want, how your husband and you are doing, as I will be praying for you and your family.
Much Love,
Stephany

Cindy,
Thanks for sharing your story in such detail. I too was pretty hard headed and delayed going to an ENT for quite some time. My only outward symptom was my snoring patterns changed when the tumor got large enough to choke me when I was sleeping at night. My wife actually tape recorded me stopping breathing and played it back for me - that's when I realized that I had to get off my ass (and denial) and deal with it. That was quite a few months after I suspected that something was amiss. I had an oral surgeon, dentist, hygenist and a gp (x2) look at it prior and none of them had a clue even though this was one honking big, highly visible tumor (that's why I always recommend going to and ENT and forget about the other 3 I mentioned earlier). I too was stubborn about getting a PEG and as a consequence lost 35% of my body weight. Some (but not all) of my doctors were really unhappy about this situation. In your mother's case almost 50% loss is substantial. In this country we are allowed to go AMA (against medical advice). When my father was alive and dying of cancer his attorney told me that to have him declared incompetent I would have to have 2 separate medical opinions and that was unlikely unless he was unable to communicate! It set me free knowing that I didn't have to be the heavy.

You may want to work with the social worker, staff psychologist and nutritionist to find a different approach to try to convince your mother that a PEG would probably enhance the healing process and get her back to a more normal life quicker and it's not such a big deal.

I too was a bad patient and was angry and in pain a lot of the time. I was tough on my wife and don't even remember half the things I said to her. 2 years later I am still making amends.

From Cindy's and your story describe exactly why most of us here feel that the caregivers lot is tougher than the patient.

Stephany,

I am not as strong as I sound. Honestly, I cry at the drop of a pin, but never in front of him. I do things that are not really good for me sometimes. I have tried numerous avenues to dull the pain and some work and some don't and let's just hope that none of them ever get me arrested :-).

The reality in my life is that I have had to learn when to back off myself. I am the proud caregiver when I am busy doing the giving. The busier I am the better off I am but when he stretches his wings and flies, I flop and hit the ground hard most of the time.

He says that he can do things himself so I go over to a friends for a chat. He swears he called my cellphone 20 times but I only heard it ring once and I answered it right away. When I got home I was in big trouble. He didn't know when to take his medication, how much, under what circumstances etc. and he wouldn't ask me on the phone for some reason.

It is weird because he wants to do this and that but he doesn't want me to leave the house. It is frustrating at the least and I am still learning how to cope with all of this.

Everyday there is some new surprise. For example,

Yesterday I had to go to the wake of a friends husband. He is dead because he had been having heart problems and when he was in the hospital a couple of weeks ago he checked himself out AMA. I watched my friend as she choked back her tears and I kept thinking about how angry she must be with him for leaving her behind. She is a strong woman but she was also very dependant on him and now... she is alone. This is why I raise hell because I don't know if I could live after something like that.

As for my husband today..... We begin week 3 today. He will have his 10/35 rad tx. He has had the side effects fast and furious from the beginning. He has 3 more chemo txs to go through and 25 more radiation. We are really just getting started. I told my husband just before the txs started that I could deal with his death if that is what happens so long as I know he fought to live with every amount of everything he had but that I do not think I could go on if he gave up. He promised that he would fight and that is what I hang onto.

We found a lump first. By the time he had the CAT scan there were 2. Finally the docs located the primary tumor on the base of his tongue on the left side. I have watched over the last 3 months the lumps grow. In the beginning I could only feel one and now they are both very pronounced. I can even see them from accross the room. Hopefully soon I will not be able to see them or feel them at all.

He is in constant pain and I call doctors all of the time. He has had fever for 7 days but the docs say his count is good.

Gary, I have been cursed at, blamed, etc. by him. I love him all the same. But when things get that tough I call my daughters or friends and tell them they have to come over because I have to leave for a while. In a way it is not fair because we always used to be able to fight before and I could yell back and say what I felt. Now I cannot do that anymore, so go to my friends and bitch at them for a while. They are really good about just letting me get it off of my chest. Then I move on to the next challenge.

I do not think that one role in this is harder than the other, I just believe that we each have our demons to struggle with and I am certain that emotional pain can be equally as severe as the physical pain. The biggest difference is that the only pain medications for emotional pain are not something that does any good and can actually complicate things more. I know I have tried and I have paid dearly for the experience.

The bulk of my strength comes from my friends and family. The people who are always there when I get frustrated and angry and sad and hopeless. I love my husband more than life and I know somewhere in me I can make it through this the same as I know that he can so long as we do this thing together. But do not think that I am not full of doubt because it is the biggest demon I have to fight and it is constant.

Stephany, you might also try reading these posts to your mother. I read them to my husband because he doesn't go on this site himself. I try to get him to but he won't so I read it to him. I am not sure if he is always listening but it makes me feel better to know that I at least gave him the information and that the words he hears are not mine.

You know your mother better than anyone, you have known her all of your life. You must always do what you think is best, but do not give up if you feel in your heart that it is right. Like I said, there will come a day when it will be easy to recognize and admit those things that cannot be seen now.

I still remember the radiation doctor telling my husband that this is very curable "If" he survives the treatments. It was not what we wanted to hear but I am understanding it more and more each day.

I do not know what is going to happen but I do my best to take things one day at a time.

We have 2 sons that are 8 and 10 and I go to Law School. My husband comes with me to school each day and lays down in the car while I go to class and then we go to the hospital for his txs. I know he is not comfortable in the car but he does it for me because he doesn't want me to have to quit school. So I know that he loves me and I am grateful for his sacrifices and I can only do the best I can to make his life as comfortable as possible. Hopefully, in the end, the light at the end of our tunnel will be blinding.

Good Luck to you!!
Cindy

CIndy,

I sent you a private message. I will write more here later. I have to run to my office. Im late :-(

Stephany

Cindy,
I think what the doctor meant by his remark is that statistically speaking, patients who complete the entire treatment protocol have a much better chance of survival - at least that's what my oncologist told me. Since I am an "insider" he had serious doubts that I would make it through treatment but I surprised him (myself too, a little bit, but I was bound and determined).

My wife actually got to the point of having discussions with a divorce attorney. We are stronger and closer than ever now, being gifted with the "miracle of reconciliation".

It's good that you have places to vent. Find more if you can. Don't put too much burden in one place - spread it out. Talk to your hospital social worker for additional support groups and resources. Ask for respite care from friends and family so you can have time for yourself. I had several drivers to take me the 60 miles to RT each day and that helped my wife a lot. And we're here too! He will probably get even more miserable later on as he's gets more beat up from the treatment. Roll with it as best you can - it will pass and hopefully he too be making amends to you for the next several years.

Gary, I am so happy to hear that you have worked out your problems with your wife. That really makes me happy. You are so kind and caring to so many people in here with your support that is nice to know you still have your wife's love and support.

I actually called Wellness Support today and was told they will call me for an interview. what is that all about? You have to be approved to attend the wellness support groups. I am willing to try anything to get through this. I really want my mom to go for support, but she said no and my dad said no as well.

Cindy, Keep up the good work in law school. I sent you a Private message about that. That is so wonderful that your husband is supportive of you finishing school with all that he is going through. That is truly unselfish and caring.

Hang in there Cindy and I am happy for you Gary regarding your wife.

God Bless
Stephany

Going to be out of touch for a couple of days. Harry went to the hospital last night. Some kind of infection. I am on my way back to the hospital now. Now I am truly scared.

Talk to you soon.

Cindy

Hi Stephany,
After my surgery and during the toughest days of radiation, I had trouble being a patient. I have always been the caretaker for my family and to lose that esteemed role was very painful for me, I felt like I was letting them down and that they would never think of me the same again. It made me feel like a burden to my family. My older girls (at the time 19, 21 and 22) had to deal with it and they did it very matter of factly. They took control and let me know that they were taking control. All out of love and the true desire to make it easier for me. They forced me to do the right thing, just as I had done with them many times while they were growing up. It allowed me to get healthier quicker and for my husband to be free to tend to our younger ones that needed that day to day care. I fought it at first and resented being babied, but they left me no choice. I was not happy with them at first but now have such respect for them and their strength to do what was right, even if it meant standing up against the allmighty mom! I realize now that it was selfish of me to worry about my control issues when it was hurting my children so much to see me hurting and suffering with the treatments. Once I let go and gave up that control, the difference in my children was wonderful, life became relatively normal again if that makes any sense at all.
In your situation and knowing what I know now, I would be willing to stand up to my mother and tell her that her way of doing things is affecting everyone around her also. Not to mention that it's affecting her healing process. Be blunt with her and tell her how it makes you feel, it may help. You're in my prayers.
Minnie

Stephany, I am not a doctor, but in my opinion, it is well past time for it to be "necessary" for your Mom to have a peg inserted. The procedure is not a big deal and it will give her the needed nutrition and hydration. I had mine put in just prior to my second chemo and 16th. rad treatment. I kept it 5 months after treatment ended and used it for food and meds. It was a very important part of my treatment. If your mother won't listen to you, ask the doctor to insist she have it done. This should already be happening. My doctors told me that they would force me to have it installed if my weight continued to go down. I had it put in and was much happier from that point on. Also, removal is no big deal. They took it out before I even knew it was gone. So there should be no fear element involved. Your mom is hurting her own recovery.

Also, the "magic mouthwash" was mentioned. It is a concoction used to deaden oral pain. I used it sometimes before I ate, when I was first starting back on solid foods. It worked well for me. It might help your mom.

I don't remember where your mom is being treated. Is she at a major cancer center? If not, she should get an opinion at a cancer center. They have a lot of experience in treating this disease. Hope all goes well for you and your family.

Stepheny, I totally agree with Kirk Georgia that your mom is doing damage to her body with such a tremendous drop in weight. I wonder why her doctors didn't do something to stop the situation from getting worse. When I lost over 10 pounds, my doctor already suggested putting a feeding tube. When I refused, he said he would give me two days more and see if I could eat or not. If not, he would order the feeding tube, whether I agreed or not. I ended up with no tube because I managed to drink and eat to the satisfaction of my doctor. Sometimes, when the moment is critical, the patient should not be given the freedom of choice. In your mom's case, I think she has no choice but to get the feeding tube asap.

Karen.

CIndy, How is your husband doing? So sorry to hear he went in the hospital.

Minnie, Thank you again for the advice. I just got home and it is late and I will write more tomorrow but wanted to briefly respond. Thank you for encouraging me to stand up to my mom and for sharing your story. Wow, you must be busy with all your children over there! ;-) How many kids do you have? I am happy to hear things worked out for you. My mom is similar to you in that she was the caretaker and always in control. I imagine it is hard for her to let go of that, and I wont ask her to.

Kirk Georgia, thank you also for the response. What is the "magic mouthwash"??? I will suggest that to my mom. My mom is being treated now (as of a week ago) By a pain management medical oncologist that sees twice a week, and she sees her surgeon once a month. Thats all. No, she is not at a major cancer center. I will suggest that to my family. Thank you for the advice.
My mom is stubborn about the feeding tube. My goodness, she lost more than half her body weight and she still wont do it. I will try to suggest it again. Thanks. I am glad it worked for you.

I will continue my prayers for all of you. I really do appreciate your support.
Love
Stephany

Hi Stephany,

He has neutropenia. Neutrophil count down to 44 and fever to 102. He is very sick and the doctors are trying to find out what bug has gotten hold of him. The cultures should tell us today.

Remember earlier when we talk about crying and such? Well that seems to be all I do now. Not in front of him, of course, but when I leave the hospital and when I am alone.

Sort of like now. Yesterday I kept having memories of every good moment we have ever had. Places we have gone etc. And I kept praying that we will still get a chance to go to the places we have always wanted to go.

I have to go now.

Cindy

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

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

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,

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

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

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

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

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

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.

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

Karen, so glad to hear that you are back working and feeling much better. I do think work is a great distraction, and you may get bored with early retirement :-) But, you could always go shopping, play cards, etc. :-) Im Jealous!! :-) I have many work years ahead before I can even utter the word "retirement". :-(

Cindy, you may not feel relieved right after you cry. I know I dont. I just finished crying for almost 2 hours. I just came home from seeing my mom and apparently, she is so tired and may not want to "fight" this "fight" anymore. But, she asked her friend to tell the family that she wants her health care management to be her choice and not ours. She just is tired and she has a CT planned MOnday and then a PET scan and then a biopsy. She is going forward, but I am going to tell her, that it is ok if she doesnt want to, that we love her. This is so hard for me....I suffer too. I know it is not my husband, as it is for you Cindy, but it is my mom and she and I have been close all my life and I love her so much. More than anything. So this is so hard on me. FOr my whole life, 40 years now, she has been my best friend..so this is devastating to me, to say the least. But this second opinion doctor has suggested these tests and she is being strong, so well see what happens.

I am glad to hear that you are still going to school. Maybe when you are feeling sad, you can pull out Torts or COntracts :-) Maybe figure out ways to cheer yourself up, such as shopping or spending time with your kids, etc. I am trying to do that now. Other things I enjoy to distract myself. Otherwise, I would be depressed 24/7. Again CIndy, I am so sorry and I am hear for you whenever you need me.
Take Care
Stephany

CIndy,

Oops my spelling leaves little to be desired in here :-) It is almost 1 am and I meant to write "here" for you. Also, I was making a point I never finished. I think crying is good in the long runs. It keeps you from bottling up your emotions so you dont "break down" one day. My friends/family are telling me that it is good that i am crying although, I dont feel the immediate relief. I just think it is healthy to do Cindy. And it is ok to be scared. THis is a scary thing. I never thought I would be in this position, but it looks like we both are. But, there are happy endings here and happy results. So, we have to all keep the faith, right? :-)
Stephany

CIndy
PS: I hated Property more than COntracts. Have you gotten to "Pierson v. Post" Yet? I dont think I spelled that right. It has been many years :-)
Stephany