Mandi and all other replys
Everyday is a challenge you think your having a positive day and then something slams you. I still am able to not show any of the concerns I voice here to my husband and daughter but here i feel free to let it out. Believe me you are all my saving grace. Another nurse in work helped a friend through this battle and just learned all the treatment didn't work and the next step is unsure. My husband is going for his MRI next week.
All I kept thinking today is is he going to have to go thru more? My good old rational self knows everyone is different. But my doubtful side gets in the way and says no more misery please. Your all right about this being a total life altering experience .Believe me I still intend to keep my best positive side out there for him and my daughter. I just need this outlet to vent so I don't explode. Thanks for the opportunity.Since I can't say it to anyone this really helps
Take Care all
Diane

Hi Diane. Your comment was very well put. It's like some things you just can't talk to your friends and co-workers about. It's not that they are uncaring people - but unless you know someone who has had a person go through this type of cancer - people just don't understand what we're going through. I have my mom and siblings - and since I had a brother who passed away in 1997 at age 50 of malignant melanoma - they DO know what cancer can do to a person. However, they don't see what my husband has to go through with the constant, never-ending phlegm problem, the swallowing difficulties and choking, etc. that are exculsive to head and neck cancer patients. So what you said about this site being an outlet to vent is so true - what a blessing for this - otherwise there would be a lot of "exploded" wives around the country! Wishing everyone here all the best always. Take care.

This is a very good thread. I am going through the same issues as others...worrying about the sleeping, slow progress, etc. He is almost 6 weeks post treatment and we both had expected him to be further along by now. I don't think the doctors adequately prepared us - maybe they didn't want to discourage us since we were so looking forward to the end of treatment.

I think that the other dynamic that sets in for caregivers is exhaustion. I know that in my case - and I assume everyone elses - I have had to take over doing all the things my husband used to do as well as keeping up with what I have always done. Then there is the insurance mess to wade through and the added financial stress of being the only wage-earner. By the time I go to bed at night, I often wish I would just quietly die in my sleep. Then I get up the next morning resolved to do the best job possible coping with what has been handed to us.

Here is quote from Amelia Earhart that I like: "Courage is the price that life exacts for granting peace."

Anita

It's amazing how we all have the same feelings and are able to vent them here . I also get overwhelmed by all of this and sometimes go to sleep at night hoping his suffering has ended and I just find him dead in the morning.Do I feel guilty oh yes but realistically enough is enough and if he goes for an MRI and he"s not cancer free what else are they going to put him through. He choses not to take the antidepressants he was perscribed and his mood truly shows it . I drop hints but get nowhere because basically it's his life and doesn't take pain meds just the xylocane viscus again his choice. But this leaves me stuck watching his agony.I will be continuing to show none of this feeling to him That was one benifit of 21 yrs as a nurse I'm pretty good at it. Again thanks to all of you for allowing me to vent. If it gives anyone support who also has these feelings to know your not the only one I'm gladTake Care Diane

Dear all,
I never thought that my "selfish" attitude would have such an impact. I was so scared that I was the only person here dealing with the stress this closely. I was honestly worried about being black-balled.
Thank you all. You've made me feel stronger. I think guilt had played such a major part in my outlook up until now. I had to be reminded that I'm not alone. We are all waging this war on an hour to hour basis. Granted....some hours are easier than others.
It's hard when you are optomistic, and it's worse when you are pessimisstic (sp?) Life intrudes and gives you a daily wake-up.
But, thanks to this forum, we are all in good company, and I'm glad that I poked the bubble of faith. Of coarse we all have it, but it feels threatened at times.
God Bless,
Mandi

I read this thread yesterday, and I`m going to echo Brian, I think there`s a lot of clinical depression going on here. I think about the newly diagnosed people and their caregivers reading this thread, and I want to tell them that all caregivers do not feel this way. I am truly thankful each and every day that I can make Frank`s journey a little bit easier. I realized I`m not the star of this show we call life, I`m a supporting player. Am I on antidepressants, damned right I am, we`ve been in this fight for 5 years,no, it does not get easier,it feels like living on the edge of hell. Would I trade places with anyone else in this world ? No, I wouldn`t. I can`t even imagine living inside Frank`s life,or accepting all his loses. So many of us caregivers beat ourselves for not being able to do more to help. I have never ever resented any of this,I`m just thankful that I`m on this journey with him.Every minute of every day is a blessing. So, please to all the new folks joining us on this journey, understand that we all don`t feel the way that the previous posts indicate. Depression clouds the sky, and there`s a lot of darkness in these posts, and to all caregivers who are feeling badly, please get some help, for yourself and for those who need you.......Dee

Dear Dee and Mandee

There is a big differrence between depression and frustration from watching someone you love in agony. The topic is coping, fear and anger . Dee I'm glad you are coping well and hope you continue to do so. Mandi the purpose of my answering your post was to help you and myself vent. We cannot vent this frustration to the person who is struggling to survive or to our chidren. Here is a good place. Not everyone choses to speak to a professional or take a pill because life is rough and you can't at that moment see the end of the tunnel. So you let it out in this manner and puff for the moment it's gone. Mandi if you were clinically depressed you would find it difficult to get out of bed to care for your 2 kids and husband. Please anyone reading this area do not take this as a feel sorry for yourself caregiver club . All sides of this stink for all envolved and I'll gladly admit it.I also hope noone feels guilty about their postings and Dee we all have different opinions and do continue to make each day a blessing for the ones we love.
Diane

I have to agree with Diane - there is a big difference between depression and just sheer frustration over a loved one's misery in coping with this illness. I love, appreciate and cherish each and every moment with my husband, and don't take any day for granted - like I used to. I don't consider myself "clinically depressed" - but I am depressed only in the fact that I wish I could do more to help my husband - and the fact that everything takes a lot of time in the healing process IS depressing and frustrating! I know that there are some people who's spouse is diagnosed with cancer - actually bail out and leave that person, at a time when that person really needs the love and support of their mate. I would never leave my husband - and will do all I can to help him - but I am just so mad about this disease and how it turned our world upside down - that it's good just to let it out in a forum where people really do understand! Like I mentioned in a previous post - friends and co-workers, as well-meaning as they are - do not realy understand and see how this effects a person in their day-to-day lives, as only the one that is going through this disease and their loved ones know.

Donna Jean

I think you worded what I was trying to express much better than I did.Hopefully this will allow others to vent in this forum without feeling guilty about their internal aggravation. So we can continue to give the ones we love the love and care they need.
Diane

Dear Dee,

I never meant to insinuate that I'm bitter over the fact of caring for my husband. Just the opposite.....I love him so much that it hurts.

It hurts to see him go from a robust 180 to 135 in 6 months. It makes me cringe to see him struggle to swallow. It tortures me to watch him gasp for breathe when he sleeps. It pains me to take his boys to baseball practice because he is too weak. It kills me to have to promise him that they will not put in another feeding tube, because he can't handle it.

My intention was never one of bringing other caregivers "down". Only to assure them that they are not alone in their feelings, if they happen to be less than "up".

You are blessed to have the outlook that you do. I am only looking for the same strength that you have achieved.

Until then, I hope I can rely on others in this forum for help.

Mandi