I'm running out of positive attitude today. I've been a nurse for 20 yrs and have seen a lot but am finding it hard to keep my spirits up enough after an 8 hr day at a psych hospital. It's hard to watch this distructive disease and treatment take a healthy active man down in such a dispicable fashion. I'm not feeling sorry for myself but I find myself wishing for something to happen to stop this suffering for his sake. IWe have a 15 yo daughter and we talk a lot. She keeps thinking everything is going to be ok and I hope I present like it is but honestly I have a gut feeling It isn't. I really don't get much info from Drs He more than likely had a code called on him last week at chemo and they didn't call me because he said not to worry me.I'm a private person and don't have any sounding board because I try to keep things seperate and I'm his only support system. I haven't given up trying and I'm sorry for the long post.I just wanted to get it out of my system and all of you at this site have been very helpful.

Thanks
Diane

The pain and frustration in your posting in palpable. I wish there was a vehicle by which we could offer you more than words to help alleviate some of your discomfort. Watching from the sidelines while someone you love battles a disease as severe as cancer is always emotionally painful and draining. The sense of helplessness to contribute to the successful outcome of your loved one's fight can break some people. Since you have said that you communicate well, tell him that as his lifelong companion, soul mate, etc. that you do not wish to "be protected" from his situation, that it is of utmost importance for you to be with him when it gets really bad. How else can you be there emotionally for him when his need is the greatest? Talk with his doctors, so that you feel as informed of every detail as possible. They have a responsibility to tell you everything in as much detail as you wish to know it. Sometimes that information will help you find hope, or if things are bad, help you prepare and deal mentally with the negative that awaits in the future. I never felt closer to my wife, not in an intimate embrace in our youth, not in a moment of passion, than I did when she was by my side at my time of greatest pain and fear. I am forever grateful to her for the strength that she showed, and her ability to transfer some of that strength to me when I was too weak to find my own. Hopefully you will find others who will offer their strength and experiences, and you will find some personal support through them. These are the times that try our souls

Oh Diane, my heart goes out to you! Having been most recently a patient, but formerly a caretaker, I know exactly the stresses and emotional toll with which you are dealing. Try to find a few minutes each day just for yourself, whether a walk around the block, or listening to some favorite music. A time/place where you can let go of your heavy-duty responsibilities for just a short while. And please know that while there are no easy answers, you can come here anytime to vent or let loose, and there are many, many of us who understand exactly.
Joanna

Diane,

I know how you feel. I feel like I'm at the end of my rope, too. Heather was just admitted to the hospital tonight. We saw the surgeon today because she is still dealing with the pockets of fluid popping up under her chin and on the her neck. Plus the last couple days, she has felt a constriction in her throat and was having trouble breathing.

The doc scoped her and saw something suspicious on her soft palate, so they will be doing a biopsy tomorrow. She is only 29 years old and has a 6 year old daughter. I am trying to be the strong one for the family plus I am her primary caregiver, researcher & treatment advocate. My heart is breaking seeing what this is doing to her. Right now I'm crying so hard I can barely see to type, but this forum is my haven. The rest of the family just doesn't get it. Heather never smoked at all and drank very little and really doesn't deserve this. 3 of them smoke, 2 use snuff, all but one of them drink too much and not a single one of them is making any effort to change, even though they see what's happening to her and know they may be next. This sounds horrible, but I have told them I can't go through this again, especially not for someone who brings it on themself by their bad habits. But it falls on deaf ears. They watch her suffer, then go smoke their cigarettes and drink their beer anyway.

I'm sorry because this probably didn't help you at all. But I also just had to get it off my chest. Thanks for listening and please know that others do understand what you are going through.

Wishing you the strength you need to continue,
Rosie

I am so sorry that your daughter is having such a tough time of it I read your posts and many others and when I am at the end of my rope I to get on here and read what everybody else is going through and it seems to help. What do you mean by fluid under her chin? It to makes me sick to see what people are doing with there lives but they think it can never happen to them. My husband was like that now the biopsy came back from the Mayo real bad and they give him maybe 8 months to live. The surgery he would have to have is so radical they think he would probally not come through it with the health and weight prolems he has already got. We are just taking one day at a time and living it to the fullest. I have not been on line since before his Biopsy at the Mayo for a second opinion but the Rad and Chemo never completely got rid of it and now it has spread rapidly. I hope Heather is going to be alright and that your family gives you a little of moral suport and that your grandchild stays very close to you. When I said that I have not been online I meant posted online for along time. I always like to read and see if everyone is doing ok.

To Diane, Rosie and bobbie jensen,
My heartfelt sympathy to you. As a cancer patient myself, I fully understand your stress and anxiety as caregivers. My husband shed tears many times when seeing the suffering I underwent.It is of great importance that you maintain a very positive attitude to cope with critical situations. I know it is easier said than done but ventilating your grievances and sharing your mental pain with others can make you feel better.Have a strong faith that there is light at the end of the tunnel although the tunnel may be a very long one and the light is still dim. It is equally important that you must keep your body strong to fight the battle with the one you love so much.Take care,

Karen stage 4 tonsil cancer diagnosed in 9/01.

Rosie and Bobbi... I am sorry to hear of the continuing burden and pain that this disease is bringing into your lives. As you both know from my many posts, I am a person who deals with science and facts easily, but I fare less well in the realm of emotions. It is a defense mechanism perhaps. As long time posters here, I feel that I know you both, perhaps not as well as a flesh and blood person that you see regularly, but even from behind the computer screen your pain an emotions reach out clearly to me. You are both part of the OCF "family " in the most intimate sense of the phrase. Please know that if there is anything within my realm of influence, no matter how small it may be, that I can help you with, I will try my best to do so. The uncertainty of the future is a common thread to us all, but it is certainly easier to face together, with others who understand our situations....

dear Rosie I am so sorry to hear about your daughter, I cried when i read your post, it just seems so unfair, please keep us informed of Heathers progress and i will keep you all in my thoughts and pray that everything will be ok.

Bobbie I am so sorry to hear your bad news, Please try to stay strong, it must be so hard, I will keep you in my thoughts, and pray for you also.

To all of you'
I really am having a hard time not crying and typing both of which I am not good at. It will never cease to amaze me the spirit and goodness in people. My heart is full reading all your posts.I wish I had some magical powers to stop all your pain if I did I'd stop the war too. I've spent most of my life around illness and death and have been priveleged to meet some amazing people who do the best they can dealing with the worst of things. I really put on a better front than my post yesterday and I thank you all very much for allowing me to vent and move on. It really helped.Maybe someday they'll make a computer that hugs until then God bless us all
Diane

Diane & Rosie,

I have expressed many times how difficult I believe caregivers have throughout this whole process. It's okay for us as patients to give in to our thoughts sometimes. I think it's alomost expected. But you all never can - it would be too hard on the patient. You put up with the bad tempers and irritability that we as patients experience and tend to take out on those closest to us. Cause we know you love us and we feel so very safe just being ourselves with you. The stiff upper lip we show the rest of the world sometimes slips around you all.

You have been through so much and been so strong I don't have a doubt in the world that both of you will get past this and return to the source of strength that you have been.

Everyone hits a bump in the road, you guys are entitled. Please know that you have my thoughts, prayers and total admiration for the care you give.

Dinah

First of all, Diane, I'm sorry I sort of took over your post. I didn't mean for people to start focusing on my problems more than yours. Sorry. Now, the important stuff - you need to talk to each and every one of your husband's doctors and INSIST that they keep you in the loop. You need to know what is going on with your husband's treatment. You need to question what you don't understand. Push for answers and don't back down. For his sake and yours, you need to ask, ask and ask some more. Don't ever doubt your importance in this fight.

Bobbie,

I am so sorry about your husband. I really don't know what to say except that I hope they are wrong. As to your question about the pockets of fluid - Heather developed a walnut sized sac under her chin a couple weeks ago. It was filled with fluid. There was a small amount of pus, but most of it was clear. They treated it as an anaerobic infection, but the culture came back negative. Before it was cleared up, she developed another sac on the side of her neck. Her mucous also got worse and changed from clear to yellowish green and her throat felt like it was closing up. It turns out that the fluid is probably from part of the tumor being necrotic. Also, her severe trismus and severe pain are being attributed to this tumor. I wonder why they couldn't put 2 and 2 together and figure this out earlier. She never did get better after the RAD was done, but we were told not to worry. Everything was fine. Some people take longer to heal, etc., etc., etc. Looking back, it was basically a bunch of crap. That's why I say question everything. If something just doesn't seem right, ask and push and DEMAND an answer!

Brian,

I would very much appreciate any input you may have. I am especially interested in any clinical trials or new treatments that you feel have shown promise for recurrent cancer. For instance, any thoughts on photodynamic therapy? I just read a recent report that sounds promising. Heather's biopsy shows an oropharyngeal tumor. I don't have all the details yet, but it looks like it was probably growing while she was still having RAD. Maybe it was there all along and was just missed. Maybe the RAD made it grow faster. I don't know. What I do know is that the "gold standard" of surgery and radiation has failed. She now will need some type of chemo. It really sucks because she was willing to have chemo with her RAD, but was discouraged from doing so. Now chemo may be her only hope. The surgeon will do more testing, but, at this point, he feels surgery is not a viable option. Her chances are very slim, but we're not going down without a fight. And if chemo fails, we will turn to nutritional therapy or some other non-traditional therapy.


Everyone else,

I appreciate all the well wishes and support, but what I really need right now is information. Anyone that has a success story with alternative therapies. Any good web sites or organizations that go beyond the traditional surgery/RAD/chemo. Any little tidbit about anything you've heard or read that sounds good. I'll take any shred of hope anyone has to offer right now. I'll feed her carrot juice until she's orange if it will help (don't laugh, my Mom has a neighbor who is doing that for breast cancer and while it may not effect a cure, it does seem to be helping!) Anyway, you get the point. Flood me with information!

Rainbows & hugs to you all,
Rosie

Rosie,

There was never a thought about you taking my post.You actually snapped me out of it. I wish I had more input to help you and your daughter.I hope someone has . Your one strong women and no matter what your daughter and granddaughter will have more than most. A woman who is capable of giving such great love.I'll say a prayer for all of you and keep my eyes and ears open for any info.
Take Care
Diane

Hi Diane,
I was a caregiver for my father when he had terminal lymphoma and it was one of the most difficult seasons in my life. I spent a year in therapy over it. Now I am a cancer patient myself and my wife started therapy today. A big part of this disease is that is simply overloads everything, whether you are the patient or the caregiver and it's very stealthy the way it does it. I have learned to cope by staying in the "now" and trying to avoid thinking about the future. And like Joanna said, you need to take a little time for yourself each day also. Caregiver support groups can be helpful also.

Hi Gary,
You now have first hand knowledge of both sides which is very unfortunate indead. The only benifit to this is you are aware of how your wife feels. I agree with staying in the now and try to do that. I wish you both the best in this very trying time. This is a great place to vent and move on. For that I am very grateful to you all.
I work in a psych hospital and believe it or not talking to people with problems helps me forget mine and when I get home I'm kinda talked out. My situation here hasn't improved my husband is trying very hard and most of the time so am I . I just had a need to vent moment when I posted and just typing it was a release. I don't gaurentee I won't have another one but I know where to find some great people. Again thanks to all of you for your support. I hopeI can be there for anyone when they need it too.
Take Care
Diane

Hi Diane,
It's probably payback for what a lousy caregiver I was! LOL I am still pretty hard on my wife some times, especially when I am in pain or sick (which is a fair amount these days). It's a hard thing for both parties. I was looking for this big turning point when I finished radiation and it's actually worse!

Hi Rosie,
Sorry, I just saw your post from Mar 19th about Heather's reoccurence and your call for help. I'm curious. What would the surgery involve and why did they say no surgery? Too soon after radiation? How big is this tumor and what stage is it? If it is early, could it possibly be removed by laser? They use this for the larynx, don't know if it can be used for the oropharynx.

As of two years ago, there were only two doctors in this country that did this procedure to save the larynx. One at Univeristy of Pa in Phila. and the other at the Mayo clinic in Jacksonville, Fla. The procedure had been developed in Germany so lots of drs. over there do it. At that time only Mayo did the procedure on patients that had radiation. U of P agreed to do it on me but then found they couldn't get a safe margin. If you need Dr. name, email me at office.