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#879 03-18-2003 04:04 AM
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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

#880 03-18-2003 05:47 AM
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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


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#881 03-18-2003 04:23 PM
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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

#882 03-18-2003 05:01 PM
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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. mad

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


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.
#883 03-18-2003 05:44 PM
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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.


bobbie jensen
#884 03-18-2003 07:29 PM
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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.


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.
#885 03-19-2003 05:03 AM
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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....


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#886 03-19-2003 06:22 AM
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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.

#887 03-19-2003 06:28 AM
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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.

#888 03-19-2003 11:21 AM
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DQKCK Offline OP
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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

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