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Having a very very tough day...


Tim'sKathy

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Here it is 4th of July and Tim and I have spent the day in the house alone...no one has bothered to call or visit...and it is too darn hot here to do much outside.

I am trying so hard to be brave, but I guess waiting for the results of the PET Scan and MRI are getting the best of me. Also, Tim is still very fatigued especially in the afternoon...we thought by now he would be better as his last chemo was 5/27.

I am very down today (not letting on to Tim at all)...he hates it when I ask how he feels, etc...he just wants to forget about it. And having everyone act like we fell off the face of the earth is not helping at all. I am so angry with my 2 stepsons. We have 3 beautiful grandchildren and they all should have been here today...

Sorry, I just needed to vent...I just don't know how much more I can take of this alone...I been praying to the lord to give me some of Shannon's strength and faith....

Thanks for being here..hope you are all enjoying the holiday...

Kathy

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Kathy,

You have alot of strength of your own, don't doubt that!!! Just by coming here and posting and caring about Tim the way that you do, shows incredible strength.

Don't have any magic words to help you, just to let you know that if you lived here or I lived up in there, I'd sure give you a call and come for a visit. Invite you to our place. Just wish I lived closer so I could help and be there for you both.

Hang in there and just know in your heart that ALL of us include you both in our daily prayers.

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Kathy, so sorry this weekend is such a strain on you. One question -- who do you turn to for support and strength? Every caregiver needs such a person to help them -- you cannot do it alone. I have a friend who meets with me once a week, and it has helped me keep my sanity. Surely, there is someone who can give you one hour a week. I hope so. Also, is there someone to watch your husband while you take a break. Another thing we caregivers need to keep our strength. I pray you have answers to these. My prayers are with you. Don

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Kathy

Sorry you are having such a bad day. Sometimes when everyone is busy with other stuff and its just my husband and myself at home I will go out and rent some movies and order pizza, not a big deal, but kind of something to make it a little more special for us. That way we both can enjoy the movies and the pizza and then I usually get something special for dessert. Sometimes our kids just get involved in their own lives and tend to forget what we are going through, so try and make the day a little special for you and your husband. Hope Tim feels better soon

Bess B

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Thanks everyone....I was having a "moment" there when I posted. Don, to tell you the truth, I really do not have anyone around. I have no brothers or sisters or kids of my own and my mom is in a nursing home...she had been in assisted living and we had just gotten her settled into a nursing home she liked and got approved for medicaid on Dec 1st and this happened with Tim Dec 11th. Sometimes I feel as if I am on a treadmill and if I stop, everything will blow up.

My friends here have basically disappeared...guess they do not want to face this and the friends that have been great all live far away..NC, MN, NE...My aunt is the only one, but my cousins all have kids and they keep her really busy in the summer. Tim's family....well, they were good when we first got the diagnosis, but as time goes on, they call and visit less and less. Tim is doing well, so he really doesn't need anyone here if I go out and I did go to Nashville for 3 days at the beginning of June to visit friends and that did me a world of good. If everything is still going ok in August, I might fly down to NC for the weekend to visit my best friends Tracy and Lisa there.

I really feel ashamed that I am whining..it's just that when someone is over, even just to chat or watch TV with us, it makes it so much easier...

I am just so scared for Tim.....I still have days when I think they are going to tell us this was all a mistake....

Thanks for being there and for the advice !

Kathy

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Kathy I have an idea to get those grandchildren to visit. Once a week we have movie night at our house for Dad..it usually is a light hearted movie that makes us life...of course there is high calorie ice cream for everyone!! Dad loves it and my kids don't mind hanging around for a couple of hours for ice cream and a movie...If you pick something the kids like they might enjoy themselves and come the following week to movie night!!! We also have game afternoon too...sometimes it is just cards but it makes us all feel a sense of normalcy again..which is a welcome relief some days!!! It also works with friends...make the first move..your friends may think you want to be left alone or else don't know how to make the first move...I bel they like movies and games too!! Good luck!!!

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Hi Kathy,

You have every right to your "moments". We all have them. Its hard to understand why people do the things they do and when you are going through something like this, it makes it harder to be forgiving. Im very disappointed in one of my very good friends who just doesnt seem to know how to be there for me since my father's diagnosis. I have always been able to accept her ways in the past and not be offended but its hard to understand how someone drops out of sight when you need them most. Im guessing thats how you feel about the stepsons and grandchildren. You cant understand how they can stay away. All I can say is maybe its hard for some of them, they dont know what to say or do, or hate to see their dad/granddad go through this. I know this is the case with my friend. She just doesnt know what to say and will be uncomfortable if I cry.

Come here and vent, we care about you. Also, feel free to email me too. Im a good listener and I need an ear sometimes too!!

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Hi Kathy,

I'm sorry to hear about your bad day. I'm an only child and have one

child out of town. I have learned throughout the years, that I have to

orgainze things even if people don't call me. You know it may be that

his children think you are too tired and that Tim is also too tired to be

bothered entertaining.

As far as being tired. My chemo ended last 8/28/02. I still get periods

that I just have to lay down. It's like I can't take another step. That

chemo is poison so it kills alot of our good cells along with our cancert

cells, so this is normal. Holidays always make things worse. This board

is my way of commuicating and sharing. It's so hard when people don't

have this disease for them to understand your limitations and feelings.

We all become concerned when there is a new ache or pain. Things will

be brighter tomorrow. I have a wonderful oncologist, he reads my scans

the day they are taken and I don't have to wait and worry like most

people do. Best wishes to you both and God Bless you both,

Marsha

____________________________________________________________

dx 12/01 Stage 11b Adenocarcinoma, nsclc. Right lung removed 1/02.

4/02 Restaged 1V, spread to lymph nodes. 6 Chemo with Taxol/carboplatin, beginning 5/02to 8/28/02- in remission and glad of it

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Kathy,

You sound like me yesterday. The house was so quiet and Bill was sleeping. I felt sad most of the time. I finally decided to get out all of my cookbooks to plan a good meal. It actually made me feel better to look through recipes and think about which ones I had made before and what I would plan.

Sometimes we just have to think about ourselves and try to rally in the face of all of this mess. Perhaps we caregivers should put together a list of "things to do when you get down". I know I really benefited from hearing the suggestions given on this posting. Go ahead and whine at times. We all feel this way sometimes.

Blessings to you as always,

Peg

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Kathy, Wished we lived closer we could have gotten together for a bar-bie. We were at home too, normally we would have beeen at the [parade and barbeque with the rest of our friends. Gene and I are fortunate to have our daughter and son in law and they are wonderful to us. They are always there when we need them. But your right the rest of the family and friends for the most part have their own lives and as time goes by they are more distant. I looked back over the years an I probablly did the same thing without realizing it. This Board is such a blessing, everyone gets a chance to vent and no one judges, they just listen and really care, maybe because they know what it is like. I found by volunteering on small local projects from home my mind is put to a positive use. I can do something and still stay at home with Gene. I do go to work each day but have cut back my hours alot for the time being. Keep positive thoughts, we will be saying extra prayers for you and Tim. Hugs, Carol

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Hi Kathy,

Don't have much more to say that hasn't been said but when you get down, go take a little walk. if you live by neighbors talk to whoever is out for a few minutes. get on this message board, it is a good two hour enjoyment. In fact, I am a quilter and can't seem to find the time now that I have found this place. Being a caregiver, I now have broaden my caregiving to the whole board. I like to ck to make sure everyone if okay. I get worried when someone hasn't been on for a few days.

I really enjoy time with my Buddy. Just him and me. We have been together since I was 15 and he was 18. We married when i was 21 and didn't have a son come along until 9 years later so we were used to being along with each other's company and enjoyed it. Our son and his family we do enjoy seeing. That is usually once a week. With him working then all the involvement with the children's activities he and my daughter-in-law are constantly on the go and that is how it should be. I don't want our son to be constantly worried about his father. His family is a great joy to all of us. Here I am rambling on. I had a phone call about a month ago from one of my quilting friends who called to tell me she admired me what i was doing. That was wanting to be with my husband all the time rather than coming to the quilting get togethers like i did before he took sick. I don't know how much time we will have left with each other so I just want to be here with him. Just enjoy your time with Tim. Take long rides together. If possible have some meals out. those are some of the things we do on his good days.. So sorry for the rambling.....

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Dear Kathy,

I know exactly how you're feeling. I had the same funk overcome me this past week or so. I wrote about it and got some great advice from the folks here on the board. This board really is wonderful for whining - there's nothing wrong with doing that. Everyone has a hard time sometimes. So my hubby and I decided to make a great big mean batch of Chili - Hot peppers and all. It's simmering on the stove now. Seems like we've been doing alot of cooking lately, but we both like to do that (we also like to eat!) He said to me the other day while I was cuttin onions in the kitchen and he was on the computer, "Hey, wait for me, we're a team!" He's so sweet. I have to remember what an ordeal I've put him thru and boy, what a soldier he is! If you can come up with maybe a Movie Marathon evening - maybe funny, silly movies, some popcorn, you and Tim can relax together, leave the rest of the world behind. I wish you a happy weekend. Don't worry, we're all here for you.

Joanie

r

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Bar-B-Ques are out for me for awhile...I can't handle the smoke. And last night I didn't feel up to making the trip into town to see the fireworks. But I'll tell you what I did do: I planned NEXT YEAR'S July 4th celebration. I looked at recipes on line and made up a list of the dishes I wanted to serve. Then I made out the shopping list. I have one of those large, clear storage boxes with a lid that seals, so I put the menu plan and the shopping list in there. I also put in some strands of solid red, blue, and clear Christmas lights (the Christmas Ornaments are just piled up in the garage waiting for someone to put them away.) Tomorrow morning I am going to stop at a local party store and buy red, white and blue paper plates, cups, etc. that will be on sale now that Independence Day is over. Those, too, will go in the box. I've already written on the sides and lid of the storage box "July 4th Celebration". Next Year, Kathy, I will have a July 4th Celebration. Start planning yours now.

Best wishes,

Fay PS Earlier this year I put together the "St.Patrick's Day Party In a box. " That's one I am REALLY looking forward to having! :o)

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