Liz put into words what I feel, and deal with, everyday. You did it so much better than I can, but, I would like to share these thoughts.

Dennis was diagnosed 5 years ago. Yes, rad and chemo were horrific. Nobody should ever have to endure that nightmare. But, we made it through, as I hope you all do.

I prayed.....put him through rehab, and thought, maybe, just maybe, we had come through to the other side.

We found that "new normal". Actually, a better relationship was formed than we'd ever had before......once the dust settled. But, it was never the same.

Yes, he went back to work, I..........got up, cleaned house, raised our boys (something told me not to go back to work........intuition? dread? I don't know) and ultimately waited for the other shoe to drop.

Then it did.

Now, we have to look for a whole new "normal". Friends mean well, but they don't have a friggin' clue!!!!!!!!!!

NOTHING is normal about not being able to hear your loved one's voice, or feel his kiss.

Crushing meds, taking care of the household, coordinating every aspect of your family's needs, those are widely expected, and verge on normal....making sure your husband doesn't drown in the shower.......That's NOT normal!

Valerie, I actually had "well-wishers" tell me that I was lucky that he could pucker his lips......Yeah, that is true on the most basic level, but they don't realize how you will never feel his tongue again.

Never hear his voice on your answering machine. Hell, not even his yell when you inevidably fight. No sense of smell, no matter how beautiful, or nasty (one good thing when you have a litterbox.


Not feel his breath in the crook of your neck while you sleep, his snore, his cough, the sigh in your ear, the feel on your breasts,.......you get the full picture.

We have shared, and valued, a full sex life in the 20 years we've been together. Now....there is nowhere on his body for me to love on that I don't have to worry about infection, dressings, blocking his airway, kinking a tube. He is equally awkward........how do you pleasure your wife without using many of the things she has come to adore.

Nobody has a clue where this leaves the caregiver unless they've been here.

And, I hate to say it, but would he have done the same for me? I want to think so, but there are times when the kids are fighting, the house is a wreck, the insurance is calling for information (which, by the way, they insist on talking to Dennis about, because they haven't gotten the power of attorney form yet, but don't have the intelligence to read his chart, and realize that he can't talk.....to realize "HELLO", he can't put it in writing either!!!!)

This world takes so much for granted. I know I did too, before this disease touched our world, but what can be done to educate others on the importance of cancer? And, just as important, how to teach the caregiver how to cope, without guilt, depression or a feeling of helplessness. How do you explain that this can turn your world into a place you don't recognize, let alone, learn to find a place in again?

I think about writing a book, but how could I?I'm afraid I'm too biased. I still haven't found that enlightened, spiritual, religious, ignorant, educated, outlook that would make it educational. Sad.

If anyone has any idea how I could do this, please contact me. It is something that I think could benefit the foundation, through sales, etc.

There needs to be an outlet for us. There has to be a way to "recover" from this cancer that will give us as much hope as the advancements in treatment have given the patients.

I'm so sorry that I've rambled. This is something that is very dear to my heart, and want all of you caregivers to know that I'm here to discuss at any time.

Love,
Mandi

Caregivers are the lonliest survivors. They act out of the purest love, and hope to be rewarded with their loved one's recovery, thanks, or maybe, just acknowledgement.

To the outside world, it is easy to

Mandi, I have never read the feelings of a care giver as well as you just put them. I thnk you covered all of the bases that a lot of us with OC never realized. I do bekieve you have the knowledge to write a book. Go for it...

I was diagnosed with stage 3 tonsill cancer on 3/9/05. I went thru chemo and rad. also. I firmly beleived it was much harder on my wife than it was on me. You sound like a very smart person with alot to share that I believe could help alot of people. I think a book or any kind of info you put out there will help other people as much as it will help you. My thoughts and prayers are with you and your family.

Mandi ,

I too write my experinces down in like a journal novel for me as a healing .....but I can tell you if you want to write somthing people will read .......WRITE WHAT YOU JUST WROTE TO US !! as hard as it is ...people want to hear it and read it ..to see the HUman side if it . Somtimes that is what it takes to make them realize. I will tell you .. I remember that Book or TV show That PULLED MY HEART STRINGS ,,way before the one that just informed me and I relate more to.

I sit here and the tears fall for you and your husband and for others who have to live through the same things. I have so many of those same fears of what if it comes back ....what then ...And by you sharing your thoughts , while they are sooo sooo personal , are probably somewhat similar feelings or concerns of some other caregivers somewhere. and it helps us as PTs see that .

PLease know that I hold you in my heart , both of you ..My husband and I have had a very tough time with all this and I don't know how this marriage will turn out ... but I can't imagine not even haivng the possibility of so many of those things you have lost.

My thoughts and prayers are with you ....and write that book. I for one would buy it !

Shar