Just a little peeved and sick of it

[Sherryg683]

I am finding myself in the worst of moods lately. I am tired of feeling awful all the time and trying to be strong for everyone. No one here seems to care or sympathize with me at all here at home. My mom preaches to me about how at 38 she conquered her bout with uterus cancer (she was barely stage I and didn't even need chemo) and how she's 78 and could die any day but you don't see her worrying about it. All she does is talk about my sister and my sisters problems...hell my sister is healthy at leas . I bite my tongue with her constantly. Before Cancer I was always very health conscious, worked out in the gym 5 days a week and was very thin and in great shape. All this chemo has put 10 lbs on me and I hate it, I'm not fat, but heavier than I've ever been and uncomfortable. Instead of saying "honey you look fine", my husband keeps telling me that as soon as I finish radiation, I can get back in the gym and get the extra weight off. I want to kick him right in his big, flabby belly and find myself resenting him more and more. I serious doubt that I will suddenly regain the energy I once had as soon as I get off rads. He doesn't seem to want to give me any sort of affection unless sex is involved , I would die for a good back rub with no strings attached. I don't want pity, I would just like a little concern and consideration. I recently went into remission but my oncologist recently told me that he thinks if I am going to have a reoccurance, it will be very soon, within the first 6 months. This has got me very worried and moody, so maybe it's just me, but no one around here seems to understand my worrying, I'm suppose to be a happy camper here, but hell... I have Stage IV cancer. Sorry to vent here but I figured this is the place where someone would understand. I am just afraid that I will never be able to go back to the old "me" I once was. I miss the "old me"...sherryg683

[Sandy H]

Sherry I am sorry to hear you are going through such a hard time right now. Its good that you feel comfortable coming here to vent. We on this board know all too well how you are feeling. Some of us have been through the same thing, some have had the support they needed from their family, some have had to reach out to friends and what ever works is o.k. Maybe, you need to be right up front with your husband and ask him to rub your back. Tell him you are exhausted, tired, from all the toxic drugs in your body. You need to rest, and get your strengh back and until you do you will not be yourself. I read a book once and it said if someone tells you they are here to help you and to call them if you need something then you need to be specfic and tell them, I need my house vaccumed, or someone to go grocery shopping for me, or drive me to the doctors. Ask them to come and visit, have tea, set and chat with you. People are not mind readers, and they don't know how you are feeling, so its up to us to reach out. Friends want to help but are scared in their own way. We are scared. Right now you are thinking, "why is this happening to me". Your life has been turned upside down it will never be the same!! Sorry, I don't want to discourage you but it will get better. Hang in there and take one day at a time, and some times it will be one moment at a time. It is like starting over with baby steps, taking a few more each day. I did lots of praying, as well as crying, finally started going to a small local church. They were wonderful, and supportive. There were those that would bring me a hot meal, come to visit, take me out to lunch. Its hard to look too far ahead as life is so uncertain right now. Only take a day at a time and don't look too far ahead. Your husband is going through his time and this maybe his way of covering up how he feels. That too will change. Please keep us posted and if you feel you need to vent here no one will judge you for it. We have all been there and done it. You will hear from others that can say it better then me. You have a right to be scared and will be expecting a reoccurence. I spent a whole year doing just what you are doing. Remember that may not happen. Doctors don't know everything they go by stats and stats have been broken. There are many on this board that are stage IV. You will hear from some of them I am sure. I will be praying for you. Sending you a big hug, Sandy

[Tom]

Sherry, I must admit that you have a reason to have your Calvins in a knot. At the risk of betraying my own gender, I can give a small bit of advice. With respect to the lack of emotional TLC you need right now, just "close down the goody store" until you get what you need. That seems to be the age old remedy I am told. As far as the backrub, take a hammer to the piggy bank and go get one on your own. There are usually qualified massage technicians available nearby.

Message to Hubby: Be thankful she has the flabby belly to aim for rather than the DNA factory. Here in Philadelphia several days ago, a woman physically tore off her husband's testicles with her bare hands during a moment of rage. Try to be a little more thoughtful. Given the prevalence of all varieties of male cancers these days, you might very well find yourself in Sherry's medical predicament some day. At that moment you will understand completely.

Message to Mom: Any of us could die at any moment in a car accident, but that doesn't make it any less traumatic when worrying about a serious disease that alters every facet of your daily existence.

You know Sherry, you might consider a one day walkout, to let everyone involved see what there lives would be like without you. Sort of the Jimmy Stewart "It's a Wonderful Life" approach. These things may seem harsh, but you deserve a break so that you can spend your time taking care of you, and not the rest of the civilized world.

And don't tell anyone you heard it from me, but women with a little meat on their bones are VERY attractive. Keep your chin up. Things will get better.


Tom

[Chelee]

Hi Sherry, You are by no means alone in how your feeling. I personally feel its good to vent. Its such a shame though that I feel the ONLY SAFE place for me to vent is on two boards I visit. Your story about how it seems nobody at home seems to care or can sympathize with you is exactly how I feel here at home. (Your post sounds so much like one I would write.)

You also mentioned how your SUPPOSE to walk around and be happy all the time when you have stage IV cancer. My heart really goes out to you because I certainly cannot by any means know exactly how you feel...but pretty close to it. I have stage IIIA, Her2/Neu 3+++, node positive but I am SUPPOSE to act like nothing has changed. I should be smiling 24/7 and laughing and I have actually been told to just QUIT dwealing on it...as it won't change a thing. (I wish it was just that easy as I am sure you do too.) We go through all this chemo and feel like crap, lose our hair...have nothing but doctors appts and lab work, scans, etc. Our lives have been turned upside down overnight. A total nightmare as far as I am concerned. But to make sure THEY aren't uncomfortable...we should act like all is right with the world so we don't upset anyone.

I agree with you, I don't want pity, but just SOMEONE, anyone to just TRY to understand what I am going through and facing. Its not easy. I really DID expect more from my family. I feel more isolated now then I have ever in my entire life time!

In your post one other thing that really caught my attention is how your not suppose to worry. Ha. I have actually been told several times when I am having a rough day to "Just quit worrying, it won't change anything". (Gee, thanks for the support, I love you to.)

I just really feel for you Sherry. This is a rough road we are all on and most people just don't get it...or they don't try too. Don't you just want to knock them upside the head and ask them what planet their from?!

I wish I could do something for you to cheer you up. All I can tell you is your not alone. (I know that doesn't help.) I can send you a big old cyber HUG. Its so sad when we thought the ones that would really rally around us and give us that extra support and love...are the ones that expect us to act like we were just told we broke our arm and it will be fine in no time.

Please feel free to vent away any time. Believe me, your post hits home with so many of us going through this. I really wish I had the right words to say, or just anything to help you out. But we do care and I know I can tell you I understand how your feeling. I am sending you another big cyber hug and warm healing thoughts from me to you.

Hang in there.

Chelee

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[kristen]

Dear Sherry,

I am so sorry you have to go through this while you should be saving your energy to be fighting for yourself. You have given to your family your whole life and now when you need some TLC it's not forth coming.

I am going to throw out another approach; it may help or it may not. But when they say these things and right when they are saying these things to you, just say "ouch", nothing more, and if they say what, just say those words hurt my feelings. Sometimes people don't realize what they are saying and I know I do this all the time, I hold it in and then some little thing makes me blow... and they don't understand why I got so mad over something so small when it really was over things that have been building up for a long time. Now I try and put it out there when it's happening so they realize that those words hurt and I don't appreciate it and w/one little word they are getting the message. It doesn't happen over night, but it saves my energy for more important things, like taking care of myself. Then maybe they will get "it", words hurt and I need some help and support I would hope could come from my family. Hopefully they can put it together and start to help out? Just a suggestion.
I know your post just pulled at me, I feel for you. Not pity but very familiar. The first couple of years are the hardest, not knowing if your going to reoccur or not, and I wasn't stage IV, so I can only imagine.....You have come to the right place, vent, vent, vent. I pray you don't reoccur and as far getting back to the same old you, it will happen, but in a new way, this is all still very raw and fresh for you, time, it does make all the difference. Stay Strong Sherry, my best to you.

[Sheila]

Sherry

I have also walked in your shoes, probably more on this board than you would believe. I have added 20# in 2 1/2 years of stage IV....I know its there, I don't need my spouse to remind me! It is hard to live with uncertainty every day, especially when you don't get the support fom your loved ones and especially your spouse. I guess they forgot the FOR BETTER OR FOR WORSE, IN SICKNESS AND IN HEALTH facet of their vows. I get much support from my parents, and my sisters, and my children are grown, I try not to burden them. It is scary but I seem to get more support from the neighbors than my own spouse....I guess he thinks having cancer is like getting a cold, you'll get over it! I even bought a book for husbands on how to deal with their wive's breast cancer...it is sitting unopened for 2 years starting to get dusty!
I have taken control over my own life...I no longer feel guilty if I want to go somewhere and he doesn't...I GO! I live every day like it is my last, and savor every minute. In 3 weeks I am going to Key West with a girl friend to get away for 5 days....and I'm not looking back, I will put CANCER on the back burner and enjoy every minute. Life is to short....live each day, and if others dont want to be there for you, find people who do! You deserve it.

[R.B.]

I hesitate to post this but it is back to the diet thing.

I am wondering more and more if the impact of Herceptin in blocking fatty acid pathways does impact on DHA etc.

Smart Fats M Scmidt is a very good book on the impact of dats on all sorts of brain factors including emotional background. I am not saying how you feel is to do with diet. Just being under the weather does not help any of us cope.

If you have not checked out the posts on omega three and six etc on this site please take the time to do it.

If nothing else it will keep your mind off dwelling on other things.

I don't envy you your dilemas, circumstances or your intenal anger and deciding how to deal with it. There are better placed than me to comment.

I did see a documentary on a woman who went through chemo and came out the other side and with lifestyle changes said she was physically fitter than she had ever been.

I hope the clouds clear and the sun comes out.



RB

[Shawn]

Thank god someone else feels this way! I just got out of the hospital due to radiation lung damage, depression, (one of my chemo buddies died on monday) and anemia. I wish I could give you a hug, I thought I was the only one with those feelings. THANK YOU so much for your post.



Shawn (yes I am a girl, lol)
Stage III
HER2+++, ER-PR-

[Kim in CA]

Dear Sherry,

From my perspective, I think one of the reasons family can seem like they don't care enough is that they just can't even allow themselves to go there, or to think that you might die. They go on like you just have a bad cold and will be back to your old self in no time. Not that it makes it right, but I think it is their way of coping. There were times when I didn't want to hear, "Oh, You'll get through this and You'll be fine". I guess what I needed to hear was, " I/We worry about you so much and just don't know what I would do without you". Let's face it, we all worry about what would happen if we were no longer around.

My mother has always been my rock. She has known great personal loss over the years(my 2 yr. old brother was hit by a car on my 5th birthday, and then lost my father in 1978 in a plane crash. She also was with her sister when she lost her battle with BC) so she knows all too well the importance of expressing your love when it counts.

In my almost 10 yr. battle with this disease, my husband and kids have gotten so much better about doing little things to let me know how important I am, but there was definitely a learning curve.

Please always feel free to vent here, cause their are lots of us who can relate!

Love, Kim in CA

[Tami]

I know how you feel! I remember that when I had my first chemo treatment on a Thursday and went to work the following Monday when I came home after working all day and feeling like crap, my husband and mom were just sitting on the patio. I had hoped that they would have jumped in and made dinner for everyone including my 3 boys. They both jumped in once I started slamming pots and pans around in the kitchen however. It wasn't that they were insensitive it's just that I had always done alot for everyone and I think on some level they felt that if I kept up that routine then we all would be OK. Finally I had to just lay it out there and say that I couldn't do this or that, you will need to do this or that and really had to FInd My Voice if we were all going to make through this. This is all about you right now and if they cannot see what you need then you need to tell them or distance yourself from them. I had to distance myself from one family member for months because he always made me crazy with the clueless things he said. At first I tried to explain to him what was going on, how I was feeling etc. He consistantly tried to make it about him and finally I just told him that I had enough shit going on right now and couldn't deal with his. We have since made up and have a much deeper relationship as a result of this. It is one of the silver linings in all this - I try to only do things and be with people that enhance my life and have let go of the many obligations that I really didn't want to do or ones that simply sucked the energy out of my life. Found My Voice and Enjoying it! Tami

[TriciaK]

Dear Sherry, I hope the caring and sensitive replies you've received here have helped you with all you are going through! This is the place to vent. I agree with all that's been said, and especially that it may be time to let the insensitive people in your life know your feelings and what you expect. Sometimes people actually think they are helping by talking tough, maybe by not showing their own fear or feelings. Thay may actually think that acting as if nothing is wrong with you is helping you cope. What a stupid idea! I have noticed that there are people who "rule the world with a sour disposition"; everyone tiptoes around them. I'm not suggesting you take on that persona---it obviously is not the real you---but maybe it is time to express your strong feelings and let them know you will no longer accept the insensitivity from your family. Do you have a friend, a counselor, a pastor or someone who can help you confront your family? They need to be told in no uncertain terms that what they are doing is detrimental to your health. Your onc may be able to suggest a counselor who can help you. You do not have to take such treatment from a spouse or any family member! And again, who knows what they are really feeling. They may be petrified that you might not make it. It needs to all be brought into the open, and I do suggest you have an ally with you to confront them. All of us on this board wish we could be there with you to do just that! We do pray for you and send out love and strong positive vibes! Let us know how things go, and if you have to vent here every day, do it! Hugs, Tricia

[Cathya]

Sherry;

I do so agree with everyone and know that we are 100% behind you and understand what you are going through. Unfortunately perfect families live only on tv and not in real life. You have changed from this experience and that means that everyone you are involved with is in flux.... in a different environment than existed before breast cancer. Telling those you love what you need and how their behaviour is affecting you is only fair to you and to them. God bless.

Cathy

[Sherryg683]

Thank you all for understanding. I actually sat down and had a talk with my sister today who understood how I was feeling perfectly, she even cried with me. She said she told my mother, that she needs to quit comparing her cancer to mine and my brothers and start showing a little more compassion. I neglected to say that my brother was diagnosed with skin cancer near his temple a month before I was diagnosed. The doctors gave him a 40 percent chance of reoccuring and told him if he did reoccur, he would probably have around 7 months to live. There's not much progress in skin cancer treatment. So mom has 2 children diagnosed with cancer within a months time. She gives him the same preaching talk, she gives me...he tells her where she can go with it. Actually, my mom drives everyone crazy, so I guess I shouldn't be surprised she's doing it with me. I know my mom has got to be hurting terribly and I know she loves us so much, maybe trying to be overly strong is her way of surviving. My husband and I have been through extensive counseling before I was sick and we really work on communicating, so I have talked with him about how he's acting many times. He always says he's sorry and will make an effort to change, he changes for a day or so, then goes back to normal. I think maybe he is trying to distance himself from me to protect himself in case something does happen. I know when I was first diagnosed, my 17 year old son, just got absolutely rude, mean and disrespectful to me. He was constantly away from the house partying with his friends and when he was home, he just didn't act like the same sweet kid he had. I finally jumped all over his butt and he said something that I'll never forget ..he said.. "mom, how do you think I feel. Do you think I want to stay around here and watch you die". I was floored and it hurt so bad and I tried to reassure him I wasn't dying. But although his words were hurting, they were honest. It didnt' excuse his behavior to me but it did explain it a little bit. He has since become a lot more loving and concerned. I guess it's a lonely walk that we with Cancer walk. People really don't know what to do or say to us. At least I know I am not alone in my feelings. It does help to vent, I am going to start seeing a counselor next week. Thank God for these boards...sherryg683

[rinaina]

Yes, thank G-d for this forum. My heart goes out to you Sherry. None of this is easy and we will all have our good days and bad...our ups and downs. You need to know and believe you are not alone and we all understand. Just reach out and vent whenever you need to because although I am new here, I found out fairly quickly that everyone here cares and wants to help everyone else out.
I never realized that chemo causes weight gain. I always thought people lost weight on chemo due to being sick from it and from either decrease in appetite or lack of appetite. Man, I really thought I might lose some extra weight, now that bonus isn't going to happen either? Why do you gain weight from chemo? I am so disappointed!

[Sherryg683]

Hi Rinaina, I thought the same thing...at least I'll lose weight...WROng. Breast Cancer is one type of Cancer that you usually gain weight from. My Oncologist nurse told me that she normally sees women with breast cancer gain weight, where as the other cancers lose it. My breasts have actually gotten bigger, even the one I've had the lumpectomy in, I sure didn't want larger breasts. Usually it's from the Decadron, or steroids they give you before the chemo to reduce the bad side affects. I had absolutely no vomiting or nausea with my chemo. Sometimes its from the type of Chemo itself, I was on Taxotere and my Oncologist told me that it was known for putting the weight on you, usually 10 to 15 lbs. I have always been so able to control my weight with working out and eating right that I was determined that I would not gain weight. Again...wrong. It just came on me although I wasn't eating any more than usual, I wasn't able to work out like I use to. I got sort of a swollen puffy look, like a lot of fluid retention. I have been off the bad chemo for a month now and have lost about 4 lbs. but still have some to go. Some say Herceptin will cause you to gain weight, others say it doesn't . I've heard it makes it harder to take it off. I think the weight gain has hit me harder than being bald..lol...sherryg683

[al from Canada]

Dear Sherry,

This is where Linda and I were very fortunate; we never experienced the "relationship tragedy " of cancer. It is common knowledge that Breast cancer is knock the shit out of your sex life. Linda was always very self consious of that and always talked to me about it. I think Linda and I had a unique relationship where we stived to maintain the "status quo" but never got uptight or threatened if it didn't work out occassionally. After all, I wasn't always there when she needed me.

The message to your husband is this: your life has changed forever, in the blink of an eye. You have a few options: you can refuse to accommodate your wife, you can cry in your soup, constantly if it makes you feel better, or you can trandscend all this image stuff and start living your wife as a person. Jesus, who gives a crap about 10 pounds???

I appologize as I have very little patience for supperficial love.

When Linda was diagnosed, the first conversation we had was about our relationship, not that she ever doubted my views and committement but we needed to bring it all to the table. We both vowed to make EVERYDAY count, like it were our last. That we succeeded.....not one wasted ay in almost 3 years. Linda vowed that she would get more from cancer than cancer took from her, meaning, when you face your own mortality, you are forced into introspection of the meaning of life, love and family. This was our triumph against this disease; where it could be other's tragedy.

I would kill to have the priveledge of being with my Linda for one more day or even a whole year, being in a comma, non-responsive and all, rather than missing her the way I do. Maybe this is getting too personal but; that is my message to the men who can't see the beauty they once married, the sweetness in the spoken word...just holding hands.

Guys, once it's gone...it's really gone, and I sure don't want anyone to regret unfinished business, or unresolved love.
Al

[janetcaruso]

Hi Sherry, I agree; the weight gain was worse than going bald. I've put on about 15 lbs with Taxotere + Herceptin and even tho it's been 6 mos that I've been off Taxotere I do think the Herceptin does make it hard to lose the weight. I've tried diuretics which have maybe helped with a pound or two, but it just comes back on after a bit. So, I wonder is this the new me? Do I go out and buy clothes a size or 2 larger? I keep hoping it will shed, but now that I've realized I'm to be on Herceptin for life, I think I just have to get beyond that. I also feel for you, and I'm glad you've had a chance to talk to your family. They need to be told how their actions affect you as they may not realize what they are doing and you need their support. It sounds like you're on the right track now! Good going girl! Janet

[Chelee]

I in no way want to redirect this topic, but I just HAVE to say one thing about "Al's" post and his love for Linda. Your are ONE in a million. Your post just brought me to tears.

I have been with my husband for 26 years and I THOUGHT this would bring us closer. I feel so alone...he acts like nothing has changed. He is good about taking me to appointments, and going to the store and such...which I appreciate. But he has made some comments that sometimes makes me wonder if he wishes I wasn't here. I know this has turned our world unside down. Its not easy for either of us.

He is more into his tv set, and making this cancer all about him to his friends and work buddies. I can't even discuss it with him. I can see him getting mad when I do. I got all upset last week over all my doctors visits and just had chemo...not having a good day. I started crying while I was making out the bills. He sees me and says "Oh COME ON NOW, I don't want to hear it."

I am not allowed to feel bad or show emotion. Thats why I think Sherry's post hit home with me. I thought the ONE thing I MIGHT get out of this beast is it bringing us closer together. (I was wrong.) Its like NOTHING has changed. Its like I have the flu and will be better in a few days.

But gosh Al...your Linda was ONE LUCKY women to have a MAN like you! A true man that many of us women would kill for. I seriously cried reading your post about how much you loved Linda and would give anything to have her back...even in a coma. I feel like I am just in the way of my husband retiring like he planned. He wanted to retire and move out to some land some where. I have throw a monkey wrench into that plan. But I thought I was MORE IMPORTANT to him than anything else...but I am not really seeing it that way. I feel alone in all this. I wish my husband cared a little bit more then he does.

I am so glad to hear Linda was loved so deeply and completely, and you guys could talk so openly. I really loved your post. I bet Linda is smiling big time. She was so blessed to have such a wonderful man in her life.

Chelee

[Roz]

Sherry, I feel that perhaps what we learn from our troubles is to try and understand ourselves and others. While your mum talks tough, perhaps she is unable to show you how worried she is. I had a friend who is a naturopath,and she had a very close friend who had a recurrence. She wanted this friend of hers to get on all the naturapathic medicine that my friend recommended. But her friend said "I respect your beliefs,(naturopathy) and I hope that you respect mine. Right now I need you as a friend, not as a naturopath or as a counsellor." Sometimes we just have to get down to tors and say what it is that we really need, right there, right now. Love, Roz

[Tom]

To the dear women that are going through the gut-wrenching, heart-breaking journey of battling for their lives against this putrid scourge, I say simply this:

Show the men (and women) in your life the post by Al a few posts back. Insist they read every word. Then tell them that THERE is the role model they should aspire to in all they do with respect to the women they vowed to love, back when they were thinner, fatter, less wrinkled, had all their hair, did everybody's wash, cooked every night, took the kids to their activities, cleaned the house, handled all the bills, and didn't have to spend hours a week with a needle in their arms filling them with toxic solvents to keep them around for a few more years of dedicated servitude to their families.

AL GETS IT... AND I SUSPECT HE HAS ALWAYS GOTTEN IT. And even after all of his love and devotion for his beautiful Linda, he now has only his photo albums, memories, and a heart shattered into a thousand little pieces. WAKE UP FAMILIES...your most precious gift is at risk of being no more. These are the times that love was made for...don't waste another second being selfish.