Cindy - LOVE that idea.

Jen - look at it this way, at least you know what kind of person she really is and can cut her out of your life. I learned a lot about people and friends when I was sick - who I could depend on and who I couldn't. It changed my life for the better.

When I was first diagnosed, I was spending hours and hours and hours on the phone with doctors and at doctors appointments. People were randomly emailing me little questions or leaving voicemails. I'd respond to them as fast as I could. Then my mother-in-law calls me AT WORK, in the middle of juggling work and the doctors, to complain. Yes, she was pissed off that her sister and daughter knew answers to questions she didn't know. My first thought was "Hello, honey, this BELIEVE IT OR NOT is something NOT ABOUT YOU! You're right, my objective in all this is to make sure you're left out."
I said it before, I'll say it again. People just don't get it.
Again - I laugh at the story now. Hang in there, the laughter will come.

Sabrina

Cindy - I agree with Sabrina...that is a GREAT idea

Dear Jen,

I can only speak from the caregiver point of view, but hang in there girl it will get better! You just have to have a little patience. With respects to your "friend", she sounds like a very selfish person. Maybe she's always been like that and you are now seeing her true colors?? It's amazing how something like this can really make you find out who your true friends are. And unfortunately, she doesn't sound like one of them...Spend time with the people who truly care about you.

Best of luck to you Jen, I'm rooting for you!!!

Shelley

Adding to Sabrina's comments...

I have one friend who makes me crazy. Her heart is in the right place but she just doesn't know when to just vacate.

She calls and at first will ask how Harry is, and then me, and then she asks if I am mad at her. I look at my phone and my head fills with ?????????????????????????????

What in the hell is she talking about? I don't even have time to be mad at myself, let alone anyone else.

Then there is the ongoing need for recognition between my step daughter and my sister. If I (God forbid) forget to mention a name in my daily online journal entry then I get the emails... well you thanked your sister but what about so and so.... or my mother even sent me an email to tell me that I had thanked my step daughter by name and just called my sister "my sister".

I never replied to the email. I love my mother dearly and I am sure that she wasn't in her right mind when she wrote it so I let it go.

But I can tell you that often I want to yell at the people in our life and say " HEY IT AIN'T ABOUT YOU!!!"

Some of our friends and even family members just suffer from foot in mouth disease and to be honest neither myself nor Harry has the strength nor energy to really worry about it. Oh and we both possess enough - don't give a shit - attitude right now that it just rolls off.

I have stopped trying to apologize for not returning phone calls and the like.

They are either going to understand or they aren't and it is not my job to make them.

Jen, Your friend might seem to be very self-centered at the moment because she doesn't know what to say or if to say and maybe she is really unaware of how it is coming across.

My best bud and I hardly see each other anymore. Her son and my son are best friends and they go over to each other's houses. (We just live around the corner from each other). I used to see her all of the time and we would sit an have a beer, go out together, etc. But 2 summers ago her mother died after a 14 month battle with lung cancer. I do not fault my friend for withdrawing. I think that it is just difficult for her and we all have our own way of dealing with things.

I take what I can get and I make sure that I find friends who will understand. Then I try to understand my friends that don't understand and I feel better inside.

Not everyone is going to be able to cope with this. Lord knows everyone here knows that. Sometimes as patients and caregivers we don't really cope either. I just find that holding the pain of being rejected and the anger for a friend who isn't coping the way you want just makes things worse for you.

If all else fails.... invite her over and spit on her too. :-)

(having to clean up the mucous left in every container with a drain in my house I can say first hand that it is better than rubber cement)

If it is a guy, tell him that your spit will make his hair fall out and he will be impotent forever. That should fix everything. Take care of yourself and thanks for sharing your current experience. Harry will finish rad tx one week from Monday (only 5 txs left). He feels worse and worse everyday and yesterday and today myself and the rad techs have really had to talk him into the rad room. He is vomiting again and it takes all of his strength. PEG insertion on Monday and hopefully he will feel a little better.

Now I realistically know what to look forward to and I can help him through it better.

Thanks for sharing. God I love this place!!!

Cindy

Jen, I don't think the neck dissection is going to add much, if anything, to your woes, and by then you will feel better anyway. I had practically NO pain, and when I got home, was out working in the garden the next day. It really is a cake walk compared to what you have already endured. Look at it as the last hurdle and it is all downhill and clear skies after that. My voice was totally gone for about 10 days, then a soft whisper, then suddenly occasional normal sounds and about two days after that normal voice. It is all going to be fine.

Cindy, your suggestion about what to tell a guy is priceless! You, too, are going to be okay as long as you are thinking like that.

Oh man, I hope you are right Joanna. And thanks to all of you for your responses. I can't even worry about the neck dissection when I'm this screwed up. Tonight I spent at least an hour kneeling up next to my bathroom sink trying my best to alleviate myself from lumps of mucous. There's just no "time out" button you can hit to get any sort of relief. This reminds me, I need to do something for pain I'm still debating whether or not to wrap up the neck with all the sores on it or see if it can air dry tonight.

Here's hoping I can get some rest tonight.

Jen

OK, now for the unpopular (man's) perspective. FIrst, the home health care folks may be hiring cheap labor to keep their costs down so they can provide service while fighting for reimbursement from the insurance companies. Second, your friend may be doing you the best favor of all by trying to treat you as if you don't have cancer. Any opportunity to resume some type of normalcy is a good thing. I went to work 3 weeks after treatment because the company was struggling and trying to can me to save money. (They still owe me over $20,000 wages.)

Your husband should call the company and tell them he took the time to tell them exactly what they should do and they blew it. Inform them it is not acceptable and to call him if there is any problems since you can not talk. Give them one more chance and find their replacement. There are many companies that are trying to survive by giving excellent customer service and they don't appear to be one.

Last and the hardest to say. Find a good way to vent your anger. Teeing off on everybody may feel good temporarily but long-term it may not be the best way to get things done that you need.

Everything you describe is about the same as I experienced and very similar to what everyone posts at your stage. It will improve but it won't be overnight. I can show you the picture of me with the raw bloody neck when my out of country relatives visited. It was a horrible sight as I look back on it and they were just shocked when I picked them up since I never mentioned anything to them until then.

I vividly remember sitting in my office, 400 miles from home, determined to not go back to my motel. I filled up a trash can a day with the nasty, thick brown goo. I vomitted up anything I ate or drank, ran an IV pack all day at work, used TPN IV feedings all night long to keep up my strength and told everybody I was just fine. I drove the 400 miles so I could lug an SUV packed full of medical crap. Was it fun...no. I just had to help the family financially so when the treatment was over, we weren't totally in financial ruin.

Jen, you can do this. It is about as bad right now as it gets, maybe a bit worse around the corner. You may dislike me for the candid responses I have given you but it is really meant because I want you to see the other side, if you will. Heck, I will even come visit you so you can kick my ass up and down the street like a tin can, if it helps you. And, I know you don't want to hear this ,but someday, you will look back at your home health care delivery experiences and chuckle. I still remember the bozos that called me and questioned me about stuff as I gave a silent, muffled yell in the phone just to hear them keep saying,...WHAT??? WHAT??? WHAT???. The amazing thing is that we only had to replace the batteries in the cordless phone when I thought I busted it.

Email me if there is anything I can do to help (if I haven't offered enough already

There are a few things you can do to help you sleep and even for the sores on the neck that won't hurt as much.

I really do care...

Ed

You are beautiful Ed!!!

Cindy

I must be just having a really bad weekend. I keep thinking of you, Ed, anyway, and wonder how anyone could work along with this crap. I finally made it through all the radiation and chemo, but feel so terrible at the moment that if the surgeon wanted to book the neck dissection, I'd have to say "Wait a minute" My poor body is just weary. It's been two weeks since I've had a conversation that involves speaking. I can't remember when I was last out in public outside of the cancer center. I'm sick of trying to get six cans of food down a PEG and not throwing it all back up. Sleeping is terrible. I did celebrate a victory today of not needing any sort of medicine or suppository for a bathroom trip.

I'm not even sure when I'll hear how I'm faring in this battle, but for the past three months I can tell I've done nothing but wage war on cancer. :::sigh::: I'm just so tired and strung out. I think I'm dehydrated because my fingers are getting pruney looking. Even when I put water in my PEG it will come out via the mouth.

I'm so grateful to all of you who post and keep us going. Before I give up completely, I'm going to try to buck up one last time to get over the last hurdle.

I don't know where I'd be without this forum.

Jen

Jen,

You are doing it and that is what is important! You find the strength to get on your computer an type, and talk to everyone here. I do not know how Ed worked through this either, Harry won't even get out of bed and he refuses to eat at all. He has tried to use the computer but he says he can hardly see the screen and he cannot concentrate. He can't even read a newspaper or a magazine.

Hang in their girl. As each day passes you are one step closer. It may seem slow but never let the goal out of your sights. Hang onto your family and you can make it.

You have spirit and will and it comes across in everything you write. Use that spirit to pull yourself through this and know that there are many of us out here pulling for you.

Cindy

If you want to know a real warrior, check out some of the posts from my dear friend KirkGeorgia. He was a traveling salesman and didn't want to take pain meds for fear of dulling his perceptions while driving. W-H-E-W is all I can think. I hope you don't mind me summarizing and paraphrasing your journey, Kirk.

Ed