Venting, ppl offering to help then do NOTHING!

cherneski

OMG I am sorry but I really just can't take much more.  Monday was my 4th TX of taxotere and cytoxan, each tx gets worse.  I am on Oxicotin round the clock with a side kick of percocettes.  This is not relieving the pain.  I can barely walk.  I now have a handicap thingy to hang from my mirror so that I can park in handicap parking.  Today was an all time low, as I needed to use one of those motorized carts in Walmart so that I get what I needed.  Next TX I will most likely be going on the Fentanyl patch, just so I can walk.  Dr. increased my steroids and gave me Ambien to help me sleep.  Well I wont be doing the ambien anymore as I hallucinate while taking on them.  I fell asleep standing up in the bathroom Monday night, I woke up falling face first into the wall.  Yesterday morning as the exterminators where here (to get rid of fleas that I know have to vacuum my house twice a day to make sure they stay away ~haha, I am lucky if I can vacuum once every 2 weeks), I banged out a box on my porch only to be stung by a yellow jacket twice on my arm that I already have lymphedema in. 

Family and friends keep offering to help, and I started asking for what I need.  I have a hard time asking for help, just like most of us do.  So if I am asking then I am ignored I have an even harder time asking again, but I do.  Because I really really need the help.  Each and every request I have made with the exception of my Dad, and my MIL (who I typically dont even like) has been ignored.  The same ppl will ask, I will tell them, and they do NOTHING.  I now just say thank you of course if I need anything I will ask.  WTF!  Why do they keep offering and then do NOTHING!?!?  Is it because they want to make themselves feel better offering?   Why bother offering if they arent going to do anything?  I cry to my friends about how bad things are, that I cant stand, I cant walk, I cry from the pain.  I am scared.  My kids can only do so much to help around the house.  My DH does so much, he cant do any more. 

I  am in contact with a lot of old friends from HS on face book.  All of them keep saying "if there is ANYTHING I can do".  And ironically a lot of them live very close to where I live now.  So here is what I posted today...

I know everyone has said if I need anything just ask. So I am asking. This summer has been tough on me as you all know, but thankfully I have been blessed with ppl helping. My little kids go to grandparents houses the week I get chemo. BIG help. But now that school is starting and the kids need to be home, I will not get the rest I need.
As you all know my treatments and side effects are getting worse. The pain pills I am on are not getting rid of the pain, so I am having a hard time walking again. Looks like I will be going on the Fentanyl patch next tx. Hopefully the patch will make life easie next timer.

Here is what I need help with, food. Yes food.I can pay for it, but I need ppl to make me and my family food. Run to the store, buy whatever is needed and if you cant bring it over I will have Dave or my dad pick it up. Things that can be frozen, taken out and thrown in the oven. Baked dishes for dinners. Sandwiches, for the kids. Pre packed lunches for the kids for school in a brown paper bag with everything they will need. Easy things.

Also anyone willing to come and clean a room of my house as I lay on the couch and not be resentful about me laying around while you are cleaning, that would be great.

I am sorry to sound so IDK about it but I cant stand long enough to make anything. I cant think straight long enough to pack a lunch with snacks, napkins, drinks. I cant walk and chew gum at the same time.

I know everyone has such limited time, I am sorry to ask but I need help. My family is suffering as I am a lunatic with my meds and the pain I am in is unbelievable. So lets just say I am not the only one in the house going through this. Cancer truely su@k$ and effects the entire family.

And as always you all know I cant spell.
Thanks all
Luv
Deb and family

Here is a response I got from an old friend that continues to offer to help, that lives 15 min. away from me.

I hope things get better soon.......

Well if she wants things to get better soon make me a plate of food, run to the store for me, do something.  I find this is what most ppl do! 

WTF!  I am so sorry this is so long, but I need to vent!  I need help, I feel so alone.  I know I am not alone, but I feel like it. 

Prayers for everyone.  Hugs to you all, and I hope that you all are getting what you NEED.

Luv deb

thegoodfight

Hi Deb,

I do not know where to begin or what to say, except you came to the right place to vent and let it out.   We can take it, so just keep dumping.   I am horrified to say the least hearing about what you are dealing with.  I know, everyone has busy lives, and they think they mean it when they say they want to help, but...................  On the other hand, most people when they hear a cry for help like yours take action.  Especially that there are children involved.  I am going to believe that angels will come to you.

I am so sorry you are having such a tough go of the chemo.   I now know how fortunate I was as I did not experience anything like you are going through.  My heart aches for you and I really do wish there was something I could do for you.  Before I moved to Florida six years ago, I lived in NJ and would have found a way to get to  you, even though I lived quite far away in northwest Jersey.

I hope your facebook "friends" really read your post and "get it".   There is kindness and caring out there and I am praying it finds its way to you.

Your job right now is to get well.  Keep working on that.  The rest of it will take care of itself, it has to.

Hugs to you......................Caren

sheila888

Hey Deb, I heard you loud and clear. I feel devastated with you. If I could come and help you I would. I don't even own a car. And I don't say things I don't mean. What can i do to help? You can PM me if you wish and we can exchange phone numbers and become phone buddies. Anything just let me know.

<<<<HUGS and HUGS and more HUGS>>>> From one sister to another.

 Sheila

lisa-e

Deb, one of my friends offered to coordinate meals and other help for me after my mastectomy.  I didn't think I needed the help, as I don't have any young kids at home - just myself and my dh.   Do you have a friend that you could get to act as a coordinator?  If you tell your friend who has said "let me know if there is anything I can do," she could contact them and pin them down.

I hope your facebook posting spurs people into action.   

cherneski

Lisa, I dont even want to ask anymore, as I have asked and got nothing.  I no I sound so negative, like most of my posts and you may be thinking well I wouldnt want to help her either, but trust me I am not like this around people in person.  I do cry, and let them know how bad I am, but I also let them know how thankful I am for tx that I am treatable.  I cant help but cry with all this cr@p going on.  I do not do chemo doalable or whatever that word is that ppl use.  I get terrible se.  Each tx gets worse, each tx I get more drugs.  My onc. is doing all that she can to get me through will as little pain as possible, and she tells me honestly what to expect.  She knows what she is talking about. 

My tounge has turned GREEN!  WTF, onc. told me it will probably be dark green by the time I am done with tx.  Nothing to do for it.  Just have a green tounge.  And lots of pain to go with it.

lisa-e

Deb, I am so, so sorry you're hurting. 

If I lived on the same coast, I would certainly bring you food and come clean for you.  The reason I suggested asking a friend to serve as a coordinator is that then you have to ask only one person for help.  

makingway

cherneski- I totally agree with you, people say such things as, "Is there anything I can do for you"? They say this to make themselves feel like an upstanding Christian person, but rarely do they follow through with actually doing anything helpful. And most people don't even offer at all. They say what your friend did on Facebook i.e., 'Hope you feel better soon'. It makes me sick to see how uncompassionate people are. I hate the 'Race for the Cure and all the Pink crap for people to buy to make themselves feel like they are helping the cause. Instead, I say to these people "If you really want to help someone dealing with cancer, offer a service, make them dinner, give them a ride to the store, offer to shop for them, frikin take out the trash! For cryin outloud, do something that would make our lives easier to bear. A pink ribbon is not going to make me feel any better....and neither is a pink T-shirt, cup or a pink mop for that matter.

Anonymous

cherneski:  I also feel your misery through your post.  Could it be that because, as you have said, you can afford to pay people, that your friends think that maybe it's not a problem for your husband to buy take out food or ready made sandwiches?  Can you afford to do something like this?  It does not have to be fast food.  I don't know how close you are to these "take-out" places.  Where I live I am within walking distance to all kinds of restaurants.  We are also close to a community college, so the prices are reasonable.

Have you told your friends that you really need help in the making food department?  I would just say it.  You have little kids.  Say it out loud to your friends.

Hope I did not upset you.  Hang in there! 

cherneski

Lisa, one of my girlfriends that I haven't seen in person in probably 10 years caught up with me on FB a few weeks/ months ago ( i cant remember).  So we have been trying to get together, but with me almost always feeling bad, and us both having kids we haven't been able to do it.  We talk on the phone some (not much cause I don't answer my phone half the time), and mostly IM each other. 

Well she saw my cry for help today and is having a pizza delivered to me tomorrow at 5:30!  She also asked me for my sisters number.  She was friends with my sister too, so I figured she might just want to catch up. 

Nope she was trying to do just what you said co-ordinate help for me.  Only to basically be told by my sister I told her (my sister) to back off, and that my sister was upset that I didn't ask her for help. 

I did ask her for help!  I was crying hysterically to my sister today about how bad things are and how I need so much help.  I called her last weekend and told her chemo was coming on Monday and could she please ask her MIL (I know I didn't ask her) to make me a tray of eggplant parm and/ or chicken parm, because she make the best in the world.  Sister said she would have her DH make me chicken parm, cause his is better.  Great I think to myself, and I know it was kinda rude of me to ask her to ask her MIL.  That was on Saturday!  Today while I was on the phone with her she asked once again what she could do to help!  I told her FOOD!  Please even if she doesn't ask her MIL to please have DH make chicken parm.  I even offered to pick up the food myself and have my dad bring it to them so they can just make it for me.  She says oh yeah I forgot.  Then tells my friend she is upset with me that I didn't tell her I needed help!  I DID! 

My sisters think that the universe will save me from myself.  If I could only "think positive"  everything will be fine.  They really kept telling me before my surgery that if I "think positive and put it out to the universe the cancer wont be so bad and no nodes involved".  I guess I really need to learn from them how to get my body to agree with the universe.  Cause within 6 months I am stage llla with 7 positive nodes. 

My SIL asks me everyday on FB what she can do to help.  So about 2 weeks ago when she asked, I told her I will need food for next tx.  that I cant do much and my family still needs to eat.  I still try to eat.  I asked her to make a tray of food.  We talked about it probably a dozen times.  She kept saying she would. She asked several times what day my tx was again and again.  I told her.  Probably last Thurs. was the last time she asked.  Tues this week just after tx she told me again "if there is anything I can do just ask".  I said thank you, you know I will.  And that was that.  She offered, I asked, she did nothing. 

It is more hurtful that people do that than nothing at all.  At least when my best friend bailed on me I knew where I stood with her.  Nowhere.  Now I have ppl that keep offering to help and do (sorry to say it again) NOTHING! 

I guess I can wait and see what happens.  Maybe some ppl will start helping.  I don't think I could have been more blunt about what I need, and why I need it.  Or should I say "want" because reality is that I "want" this to make my life and the lives of my DH and kids a little easier.

Once again so sorry for venting FOREVER.  Thanks for listening, reading.

cherneski

Makingway~ I so agree with you!  Yes come take out my trash, don't buy me another pink ribbon!

Adnerb~ no you didn't upset me.  The reason I put I can pay for it is because I know times are tough all over and I don't want ppl to think I expect or want them to buy my food.  Take out is so expensive and I live in the boone docks. 

All of my friends and family know how bad off we are financially right now.  Me being out on state disability is shorting the house $600.00 per month, then the Dr.s bills are crazy.  Every time I have TX it costs me $110.00, $50.00 for my co-pay to the onc. then $60.00 for my emend.  Kids going to day care on days I cant take care of them another $45.00 per day.  Not to mention my Dr. is about 100 miles round trip so the gas.   

I hurt so bad, if I had my way I would not get out of bed until chemo was completely DONE.  But I have no choice but to do things as I have a family.  I just want it to be easier on everyone.  I just want a little help. 

From the looks of the responses I need to move to CA~lol

sheila888

Hey Deb ...I cant sleep either, my daughter is a personal chef to a family in New york.

I cant get in touch with her until Monday. I am sure she knows more about how to coordinate food and the all 9 yards.....She might have some solution to your problem about food. Try to stay focused the little ones need their Mommy, I know how difficult this must be for you.

Good Night my friend.

 Sheila

cherneski

Well my girlfriend that I mentioned above posted a loooong message under my cry for help (on FB) with her email address and suggestions.  I need an Angel and she stepped right up and grabbed her wings.  Right now even if no one does anything, I still feel so much better with her helping!  She is DOING something!

Sheila, my little ones haven't even been home since Monday.  My older ones 19 and 14 have been here, and they help A LOT, but still they are teenagers  lol.  Little ones will be coming home tonight.  I miss them so much, I miss the big ones even though they are here because I am just not the same.  I am so on edge.  I miss my old life.  My hormones are so screwed up.     I am so screwed up!  I only slept about 2 hours last night again. 

Does anyone know how to get rid of this green tongue and disgusting taste in my mouth?

Anxiousmama

(((hugs)))) I wish I lived nearby. I don't have it quite as bad as you, as I'm not having chemo, but I've had the same thing. I really don't know why people do it and it drives me batty. Sorry people are crazy. If I've learned one thing from all this it's that you really can't depend on most people and the people you least expect will step up and help out but you just can't count on your friends. . I've had a "friend" stop speaking to me b/c I had to back out on a volunteer commitment that she'd "recruited" me for - I had SURGERY the week I was needed. And, I've had someone I have only briefly spoken to during a scout meeting watch my kids during a doctors appointment even though her kids were out of town. 

hrf

Deborah, I am so sorry to hear how badly things are going for you. I'm only 2 months PFC and just 2 weeks finished rads - this is my second bc. I truly empathize and if we lived here in the same city, I would at least bring you and your family a meal. I agree that many, many people make the offers but few, if any really come through. Fortunately, my children are all grown up so they don't depend on me. But I am alone - (male friend has bailed on me now) - the lonliness is also terrible. None of us has an easy time and we might be feeling it differently......but we do feel your pain. I hope your friend is able to coordinate some help for you and I hope the next few weeks go as good as possible. There is a huge psychological lift once you have last tx. But the hard part then is everyone says "it's over" when in truth it's never over again. Vent here whenever you want. We will listen.

cmharris59

Hi Deb,

I am sorry that I can not be there for you. I know exactly what you mean. I live alone in a small town and told everyone that I knew about my diagnosis. All said they would help. One of the things I asked was for someone to help me clean the litter boxes for my cats. It needs to be done twice a week at least. With chemo, this is something I was supposed to avoid at all costs due to the immune depression. I had one friend and a niece that cleaned litter boxes during my treratment. Sometimes it got done once a week; sometimes once a month. The rest of the time I cleaned them.

I had terrible SEs during my chemo and am still suffering long term effects.  One of the things that really irritates me is that now they say I am so strong for getting through all of this alone!!!! I tell them: "No, I just happen to get out of bed occassionally and do something. I am not strong. I am alone, not by choice. I could have used help getting throught treatment. I had no choice."  The response is usually that it is a shame that I am alone and too bad that I didn't have anyone close by. If they had known that they would have helped. They knew. They have just chosen to forget.

I hate to cook and have had issues with nutrition from day one.  I wish that I could offer you some good advice, but I have none. I think sometimes that it is a miracle that I have gotten this far.  I hope that you manage it better than I did. As for taste... Have you tried avoiding metal utensils and drinking from cans? This helped me. I used plastic utensils and straws a lot.  Still do. Another survivor said that she found that eating a cherry tomato before meals helped her taste buds. I didn't try this one. I don't like tomatoes. But she swore by it, something about the acid changing the taste of everything..

I do not know where Belvidere is.  I have a friend near Philly. I am so sorry that you are experiencing this lack of compassion, but it is not unusual. You are not alone in this respect. I cry with you. I cry nearly every day and I am on more meds than I ever thought possible. I understand the pain that you are having. I, myself, am on Methadone and Percocets for pain. I wish that you didn't have to deal with any of the SEs. 

Feel free to vent to me anytime. I am so sick of this disease. I, too, am now handicapped. I want my healthy life back. I was in great shape and had agood life. All of it has gone down the toilet. Positive thoughts, my azzzzz.  They didn't help me when I had them so I am trying the opposite. 

Sorry, I was hoping ot be supportive. Instead I have just vented about my problems. Maybe my counselor is right that I have started thinking ME ME ME.  I didn't used to be that way.  Now all I seem to do is whine and complain.  I sincerely hope that things get better for you and that you don't end up like me.  Lots of hugs and healing energy coming your way.  I hope it helps.  

I did have people that acted like I wasn't specific enough in my needs. Maybe you can start saying something like:

"Yes, I need dinner prepared for my family on Friday. Friday. Friday. I need a week's worth of lunches prepared for the kids  by Monday. Monday. Monday. They like peanut butter and jelly and turkey with cheese. They need a snack and all the accoutrements.  I repeat I need these by this date! "

Seriuosly, I doubt it will help. but maybe.....

C

whippetmom

Oh my goodness!  That you had to get to this desparate point to post this cry for help on Facebook is just unfathomable.  If that one friend who seems to now be taking some action could be the conduit for other people to contact her and organize food deliveries and school lunch packages, that would be ideal.  I hope that this lights a fire under some folk and that you get the help you need until you are feeling better again.

Hugs...

Deborah

apple

Deb.. hang in there.  i've been reading your posts and thinking about you.  Wish i was rich.. I'd hire you a housekeeper for a while and buy you a ton of groceries

sounds like you need to get a handle on your awful nausea.  Don't eat anything but the plainest of foods like plain oatmeal, with just a tiny bit of water.. just a spoonful at a time... maybe a peeled and sliced apple, plain rice or toast.  Just eat a tiny bit at a time and drink lots of water every time you get pissed at cancer.

i found that sleep aids do the opposite of what they are supposed to do..they get you to fall asleep but then you are awake for twice as long.  you'll go to sleep eventually.  don't take too many pain pills.. just a few, because they seem to make you feel your pain more when they wear off.  I know that sounds simplistic and do not mean to discount the value of pain meds.  sometimes less is better.  You have to experiment.  I've found the side effects from the pain meds to be so unsettling. as if I'm not myself.

 maybe you can find a breast cancer support group..  people are so willing to help, you just have to find the right ones.  maybe you could call the County offices  on Tuesday and see if there is a social worker available who could help you fill out some applications for assistance of some sort... you mentioned disability - maybe a few months of food stamps could help you stretch your dollars further.  It's not so great that we (the ones who are sick) still need to be the ones that make sure that everything runs smoothly in the family.

Write lists with your kids.  I found mine do so much better if they can just read what needs to be done and not interact too much with their sometimes negative mommy. 

 just hang in there.. tell youself that the upcoming treatments will be a piece of cake and believe it.  My first and 2nd treatments were the worse by far.. i kind of got in the groove.  i don't know if that will help but who knows, it might work.

go ahead and scream 'scru you apple you have no idea!!!'  ..... that's ok.  I won't be able to hear you in Kansas and I will still send big hugs.  .    (actually some people scream in the shower (after warning their family).

I had a lot of fun finding the look that complimented my baldness.  you have the opportunity to try some new and different eyebrows with the budget brand 'Wet and Wild's awesome eyebrow kit.  You'd make a good Cleopatra... maybe some stick on wild and crazy tattoes.  You seem like the type who could pull that off.  I loved your punk hair do when you were first shaving your head.

Feel free to PM me  (unless you are pi$$ed off). 

hang in there.  you'll be done soon.

cherneski

Thank you all so much!  I want to say money is not my gripe.  It is the pure lack of compassion.  My DH took my kids to a Bday party over one of my friends houses Saturday, when he got home I waited for him to tell me all about it.  He did.  I said did anyone even ask about me, he told me yeah and told me about the ppl that asked and none of my friends asked about me.  I am just truly hurt by all of this.

I know ppl lead very busy lives and I am not asking for ppl to stop their lives, but to help just a little, as I am not able to do much of anything.  Then when ppl dont even ask how I am doing.  That hurts. 

I talked to my sister last night for about 5 minutes, and she didnt even ask how I am doing.  I know she is now mad at me for my friend calling her.  All my friend was doing was trying to help and my sister acted like she was under personal attack.  Whatever.  She is coming up today to take my kids to Dorney park ( part of her Marter role),  lets see if she brings me food, lmao.  At this point I will settle for her just being nice.

On a better note, my SIL came up yesterday with a friend of hers that went step by step with her mother and cancer.  They brought us 2 trays of food, and gave me such moral support it was GREAT.  Barb her friend is my DHs family friend, and was so great!  She pepped me up and took DH aside and chatted with him about how to get in touch with a social worker at the cancer center to get us professional help along with how he can help me better.  He seemed in such better spirits as I know he feels defeated and doesnt know what to do anymore.  I was the caretaker of the house.  I knew the kids schedules, I took care of the bills, I ran the house.  And now I am pretty much useless.  A reality check for everyone!  But DH is getting it the worse.  His world has been turned so upside-down.  DH has taken the reins and so far so good. 

2 more to go!  God I hope it get easier! 

Hugs

dlb823

Deborah ~  Have you heard of this organization?  http://www.cleaningforareason.org/

If they're active in your area, they will come and clean your house for you, free of charge!   

Also, have you seen this list of bc services?  http://bb67.wikispaces.com/   

It was compiled by one of the members here (sorry, but I can't think of her name at the moment), and may have one or more resources on it that could help you.     

Thinking of you ~  Deanna

LisaAlissa

This isn't a place to get support, but it is a place that can be used to organize support! 

http://www.lotsahelpinghands.com/caregiving/home/

This is a tool that will help your friend (or sister) organize the help you need...and when you need it.  It lets the people who want to help sign-up for particular tasks at particular times.  Be sure to take at look at the tab "How it Works." 

HTH,

LisaAlissa

cherneski

Thanks again you AMAZING LADIES and GENTS! 

So when my sister came up yesterday she brought me applesauce.  Yes applesauce.  I guess it is better than nothing.  She was cold and you could tell she just didnt want to be here.  I am reading an amazing book right now that goes into the 2 different types of women that get BC, the minimizers and the worry wells.  I am a worry well.  It says how I might be alienating ppl with "HOW" much information I am giving them when they ask.  So I will work on not giving too much info anymore.  Maybe thats my problem. 

I had to go to the Dr. yesterday as I have some sort of infection in my foot.  I cant walk on my heel of my right foot.  I saw a different onc. as mine was in her other office.  He didnt seem to have much of a clue.  So now I am on antibiotics and have to watch for fever.  I have to go to the store to buy a working thermometer as my house ate the ones we have.  $60.00 for the antibiotics.  Down 10 lbs since last week, cause I puked for 5 days.  He gave me a script for a anti-nausea patch, I went to pick it up found out insurance doesnt pay for it so it would have been $424.00 for the patch that is good for a week.  I think I will pass.  I have kept food down since Sunday so hopefully the puking is done.

I will be posting another thread on the infection but if anyone has had this please let me know.

My right heal is very very tender, if you touch it it feels like you are stabbing me and it is warm to the touch.  We know there is an infection in there even though there are no outward signs of it.  Anyone have this?