I Really Hate All Of This!!!
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Stormy8281
Member Posts: 24
First let me say that I don't know what I would have done without all of you and your upbeat attitudes.
I just would like to know how do you do it?
I was to have my last Taxol chemo last week, but my body was in pain from my head to my toes, and I could not move. So this Wednesday, I hopefully, will be having my last chemo treatment.
I feel so much like a downer. I've tried to be upbeat, smile, and tell myself, others have it worse, but it doesn't work. Some of you may remember my pregnant daughter left me high and dry when she found out I had cancer. She didn't need the stress. From the beginning, people would tell me not to worry about her and try to get just get myself feeling better. Then I would hear like most of you did, that this was your time to have others care for you, and be supportive. That didn't work. You see I have had a horrible time getting used to letting others take care of me, and when I tried, others started to complain that they didn't understand why I was so sick all the time, or why was I in so much pain. In the first series of chemo, I developed an infection in my port, and was hospitalized for four days. I tried to talk to one of the drs who owned the specialty women's cancer center, and he told me that he could tell I wasn't happy with my treatment and maybe I should look elsewhere for my treatment. Please believe me when I say, I'm not the type that complains, I just want to know the 'whys' of what's going on with my body and was never told I had an infection until it sent me to the hospital, and I supposed since I was in this precarious situation, the drs hoped I would receive treatment elsewhere to protect their behinds. So I did. The new center was fantastic. No frills, no underlying moneymaking small prints, and the best group of nurses, aides and reasonably nice doctors. They all thought I was the nicest person, always smiling, great with the other patients, all in all a "real trooper". I never complained when it took my nurse at least three or four times to find a duable vein. I knew it wasn't her fault, I don't have the best of veins, but it still hurt, and I was trying to make her feel better. That's the type of person I am. I know I'm in the midst of complaining, but I was taking taxol every week for 12 weeks. The effects didn't affect me until the end of the 12 weeks. I hated to complain to them, but I only wanted to know if the horrible pain I was having was normal. All the drs, and my nurse would say, the side effects were different with everyone. I didn't even know body pain was a side effect until I discovered someone on this discussion board was experiencing the same thing. Then it comes back to my daughter. I worried more about what was going on with her, that I didn't care that I was going through chemo treatments. Now, my mom, husband....who are my support group say I shouldn't worry about her. I tried, but it's very hard. My mom is 78 and my husband is 13 years older than I am and was in a horrible car accident, where he was not expected to live, but left him with mild brain injury where at times, he acts like a 9 year old. My daughter does talk to him, but all he tells her when she asks is that I'm fine. Then he tells me that she doesn't want to even talk to me until a week after the baby is born, and if I planned to come up, (like I would even go somewhere where I'm not wanted) I couldn't stay a week, only a weekend. Because of all of this, I cry, and cry, and cry....non stop. I really try not to let anyone see me, but they know how upset I am with my daughter. My mom called my daughter, only to tell me (and I could just tell the words that were coming out of my mother's mouth were from my daughter). Mom told me that I to just get over things, and go out more, and STOP FEELING SORRY FOR MYSELF. I couldn't believe it. Through all of this, I've tried to do what I'm supposed to do, even trying to make everyone else happy. I am so unhappy. My brother doesn't understand why I'm being treated like this, and has suggest I try to be a little more self-centered. It's gotten to the point. I don't want to deal with anyone. I feel it's always damn if I do, and damn if I don't. My husband thinks I'm angry at him all the time, and I don't want to hurt my mom's feelings, because she really tries. Now, I find out there may be side effects to rad. I had heard about the sunburn-like pain, but not really much more. I have read, and still read about everything and more that I need to know about BC and other cancers. I'm so sad, about being accused about not knowing what I need to know about what I'm going through. I don't expect anyone to wave their magic wands, and I know there are lot's of them out there. You all are angels, and I don't know what I would have done without you all. I'm so so sorry to let it all out, but I really feel so alone, I don't know what to do. When I ask for answers from drs, and nurses I feel I'm asking something stupid, so I step back a while, and just act like a good little girl. I do see a theraphist, all she does is sits and listens to me She says she wants me to get it all out. Then says she feels sorry for me. I don't want people to feel sorry for me, I just want to know how I'm supposed to feel. I keep thinking there's an expiration date on how much time, people are to be there for you. I should erase everything I've written. But..... . I'm not even going to re-read what I've written. Thank you all for being there.
Gale
I just would like to know how do you do it?
I was to have my last Taxol chemo last week, but my body was in pain from my head to my toes, and I could not move. So this Wednesday, I hopefully, will be having my last chemo treatment.
I feel so much like a downer. I've tried to be upbeat, smile, and tell myself, others have it worse, but it doesn't work. Some of you may remember my pregnant daughter left me high and dry when she found out I had cancer. She didn't need the stress. From the beginning, people would tell me not to worry about her and try to get just get myself feeling better. Then I would hear like most of you did, that this was your time to have others care for you, and be supportive. That didn't work. You see I have had a horrible time getting used to letting others take care of me, and when I tried, others started to complain that they didn't understand why I was so sick all the time, or why was I in so much pain. In the first series of chemo, I developed an infection in my port, and was hospitalized for four days. I tried to talk to one of the drs who owned the specialty women's cancer center, and he told me that he could tell I wasn't happy with my treatment and maybe I should look elsewhere for my treatment. Please believe me when I say, I'm not the type that complains, I just want to know the 'whys' of what's going on with my body and was never told I had an infection until it sent me to the hospital, and I supposed since I was in this precarious situation, the drs hoped I would receive treatment elsewhere to protect their behinds. So I did. The new center was fantastic. No frills, no underlying moneymaking small prints, and the best group of nurses, aides and reasonably nice doctors. They all thought I was the nicest person, always smiling, great with the other patients, all in all a "real trooper". I never complained when it took my nurse at least three or four times to find a duable vein. I knew it wasn't her fault, I don't have the best of veins, but it still hurt, and I was trying to make her feel better. That's the type of person I am. I know I'm in the midst of complaining, but I was taking taxol every week for 12 weeks. The effects didn't affect me until the end of the 12 weeks. I hated to complain to them, but I only wanted to know if the horrible pain I was having was normal. All the drs, and my nurse would say, the side effects were different with everyone. I didn't even know body pain was a side effect until I discovered someone on this discussion board was experiencing the same thing. Then it comes back to my daughter. I worried more about what was going on with her, that I didn't care that I was going through chemo treatments. Now, my mom, husband....who are my support group say I shouldn't worry about her. I tried, but it's very hard. My mom is 78 and my husband is 13 years older than I am and was in a horrible car accident, where he was not expected to live, but left him with mild brain injury where at times, he acts like a 9 year old. My daughter does talk to him, but all he tells her when she asks is that I'm fine. Then he tells me that she doesn't want to even talk to me until a week after the baby is born, and if I planned to come up, (like I would even go somewhere where I'm not wanted) I couldn't stay a week, only a weekend. Because of all of this, I cry, and cry, and cry....non stop. I really try not to let anyone see me, but they know how upset I am with my daughter. My mom called my daughter, only to tell me (and I could just tell the words that were coming out of my mother's mouth were from my daughter). Mom told me that I to just get over things, and go out more, and STOP FEELING SORRY FOR MYSELF. I couldn't believe it. Through all of this, I've tried to do what I'm supposed to do, even trying to make everyone else happy. I am so unhappy. My brother doesn't understand why I'm being treated like this, and has suggest I try to be a little more self-centered. It's gotten to the point. I don't want to deal with anyone. I feel it's always damn if I do, and damn if I don't. My husband thinks I'm angry at him all the time, and I don't want to hurt my mom's feelings, because she really tries. Now, I find out there may be side effects to rad. I had heard about the sunburn-like pain, but not really much more. I have read, and still read about everything and more that I need to know about BC and other cancers. I'm so sad, about being accused about not knowing what I need to know about what I'm going through. I don't expect anyone to wave their magic wands, and I know there are lot's of them out there. You all are angels, and I don't know what I would have done without you all. I'm so so sorry to let it all out, but I really feel so alone, I don't know what to do. When I ask for answers from drs, and nurses I feel I'm asking something stupid, so I step back a while, and just act like a good little girl. I do see a theraphist, all she does is sits and listens to me She says she wants me to get it all out. Then says she feels sorry for me. I don't want people to feel sorry for me, I just want to know how I'm supposed to feel. I keep thinking there's an expiration date on how much time, people are to be there for you. I should erase everything I've written. But..... . I'm not even going to re-read what I've written. Thank you all for being there.
Gale
0
Comments
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I am glad you didn't erase a single word. To start with, you ask how do "we" do it, stay upbeat. I don't. But when I write to someone on this site I always try to help them as much as possible and so my words may sound positive. Each of us has different circumstances, some better, some worse, but I think we all could write a paragraph like yours. I know I can. All I can say is... here is my hand. I don't really know where to lead you, just feel my hand holding yours. Lets both take it nice and easy. Lets both tell each other secrets like "I still hope everything is going to be okay". Maybe just here, but definitely here, it is permissable to rest, feel comforted, and hope.
Really, it can be too much for any one person, as we have all found out.
Love and handholding, Joyce0 -
Oh, Gale. With a big lump in my throat, my heart goes out to you.
What can you do? Well, you're doing it. Vent to us. Tell us how unfair it is. Tell us how lousy people treat you sometimes when the right, decent thing for them to do is to JUST BE NICE. Complain about the side effects because, quite frankly, they suck. Tell us that you're tired of people telling you to move on when you're still grounded and fighting for your life. Scream at us about how callous and pompous medical professionals can be and how hard it is to keep up with all the latest information, technogoly, treatments, side effects, and what you should amd shouldn't eat and drink, etc. Between all of us, we'll figure it out. Alone, it is all overwhelming. But together, we are strong and the most knowledgable panel of experts in the field. Keep writing us. We'll listen, we'll empathize and we'll give comfort, kind words, and support. We'll be angry with you (well, I will. Chen will reel me in: "Be stronger than not angry at"! LOL!). We understand what you're going through, we've been there in one way or another, and we will always listen. Keep writing us until one day -- you will tell us that you've had a good day. Something happened that made you smile or made you feel good. Someone was kind when they didn't have to be. And we will celebrate your happiness with you. I promise you that these moments will come. And some day, you'll reach out to someone who is having a hard time, and they'll ask you: How do you do it? And you will tell them because you've been through hell and came out of it and onto the other side.
The side effects of cancer in the pamphlets never mention the things that you listed, but they should. The chemo side effects go away . . .hair grows back . . . scars fade, but there's an innocence that is lost. There's some people in our lives that we never look at in the same way again. Sometimes we move on. Sometimes, we just move away from them because we have to save ourselves.
I wish you peace and love,
Kim
p.s. Don't stop asking questions of your doctors and nurses! I know it's cliche, but there are no stupid questions.0 -
What a beautiful response, Kim!!!kbc4869 said:Oh, Gale. With a big lump in my throat, my heart goes out to you.
What can you do? Well, you're doing it. Vent to us. Tell us how unfair it is. Tell us how lousy people treat you sometimes when the right, decent thing for them to do is to JUST BE NICE. Complain about the side effects because, quite frankly, they suck. Tell us that you're tired of people telling you to move on when you're still grounded and fighting for your life. Scream at us about how callous and pompous medical professionals can be and how hard it is to keep up with all the latest information, technogoly, treatments, side effects, and what you should amd shouldn't eat and drink, etc. Between all of us, we'll figure it out. Alone, it is all overwhelming. But together, we are strong and the most knowledgable panel of experts in the field. Keep writing us. We'll listen, we'll empathize and we'll give comfort, kind words, and support. We'll be angry with you (well, I will. Chen will reel me in: "Be stronger than not angry at"! LOL!). We understand what you're going through, we've been there in one way or another, and we will always listen. Keep writing us until one day -- you will tell us that you've had a good day. Something happened that made you smile or made you feel good. Someone was kind when they didn't have to be. And we will celebrate your happiness with you. I promise you that these moments will come. And some day, you'll reach out to someone who is having a hard time, and they'll ask you: How do you do it? And you will tell them because you've been through hell and came out of it and onto the other side.
The side effects of cancer in the pamphlets never mention the things that you listed, but they should. The chemo side effects go away . . .hair grows back . . . scars fade, but there's an innocence that is lost. There's some people in our lives that we never look at in the same way again. Sometimes we move on. Sometimes, we just move away from them because we have to save ourselves.
I wish you peace and love,
Kim
p.s. Don't stop asking questions of your doctors and nurses! I know it's cliche, but there are no stupid questions.
Especially about lost innocence and moving on...
Hugs, Kathi0 -
Gale, Your post breaks my heart. Cancer is such a frightening, difficult thing to go through in and of itself without people being horrible to you. Your daughter should be absolutely ashamed of herself. I wish I could tell her that to her face too. I don't know how she lives with herself treating you so horribly. We are here for you Gale no matter what. We understand what you are going through and care about you. I would not waste any more energy on your daughter while you are going through treatment. What an ungrateful person she is-----you gave birth to her and raised her for goodness sake. Well, I can't discuss her anymore because it makes me too angry. Try and find a support group in your town. I go to one every three weeks and it is very helpful. Visit the chat room on this site. The people are wonderful and very supportive. Do not allow anyone who is negative and unkind to be around you Gale. You need only positive, kind people in your life while you navigate through the rest of your cancer journey. Things will get better. Even those of us who are a ways out from treatment still have our bad days. I was diagnosed in April of 2006 and I still get fearful sometimes and dwell on the whole thing. But we do manage to move on and enjoy life. You are never the same person you were before the cancer but it(cancer) definitely teaches you things that cause you to grow. I will pray for you and hope that you will find all the support you need. Feel free to e-mail me any time and please visit the chat rooms. I have met some of the dearest friends there that I will ever know. Blessings and hugs to you, Eileen0
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I'm not sure "Thanks" will be enough to say it all to you. It is so good to know the kind people in the world are right here. Thanks for being there for all of us. God Bless you all. Gale0
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Hey Stormy,
You are having a rough time, and it is ok to vent, and even to feel a little self pity. We have all gone thru a lot of trauma with this beast, and some of us experience horrid side effects from some of the chemo, I DID, and some have none. Just keep remembering that this too shall pass. As for your daughter, you have better things to focus on. She will have to answer to her own conscience. You must focus on the good folks, and let anyone who wants to give you a hand give it !! They are blessing you and you in turn are blessing them. Dr's are all different, and you have every right to have one that you are comfortable with, that is just a sign of intelligence, and non submissiveness. Don't submit to the beast. Keep up your head and lift your heart. YOU WILL GET THRU THIS.
Toni0 -
along with these other lovely ladies, i am with you too, holding your hand. My Mum and Brother have abandoned me since being diagnosed, Mum says she has mental issues to deal with and my brother just doesnt have anything to do with me. I am dissapointed and gobsmacked by their reactions,BUT, i refuse to use any of my energy (little i have) in worrying about them, this is my time to heal, i will think about it when i am good and ready. You should do the same, push your daughters terrible behaviour to one side, YOU are the important one right now, its all about you and getting better. Take each day as it comes, keep in touch with us all through this wonderful chat room and here's a great big HUG for you. xxx0
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Oh, Gale. You know I'm here for you. I didn't realize that your situation with your daughter was still ongoing. I'm so sorry - but I agree with the other gals - this is YOUR time to heal. Deal with all of those other issues once you have the strength and energy. You have had a long bout of chemo - longer than most that I'm aware of and by now your emotions must be at their raw edge. I know how I was with just one infusion every three weeks, for 4 rounds. I know you feel like you have no where to turn. Well, you've found the place - and include the chat room when your computer is up and running. YOu'll find a lot of support and good advice there. Gale, try to concentrate on those people who are trying to do for you - your husband, your brother, and your mom. They are the blessings in your life and they are the ones you can count on. I know this all sounds like a bunch of platitudes, but my words are heartfelt. You hang in there kiddo. Hugs, Marilynn0
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Sweet Sister~ Everyone has said such eloquent things...and I echo them all. As wonderful as we all are, I think I am not going out on a limb by saying none of us ever wanted to be HERE~ battling with and talking about Cancer. It has affected so much of our lives, as you know only too well. And whereas we can be smart-mouths, and silly, bottom line is, we have all been altered by this disease.
Wish that I had The Magic for us all....but of course, I do not. I hope that venting and being so brutally honest was cathardic for you, and I for one am pleased that you feel the safe haven of this room to do just that. If this place isn't the true definition of support, I don't know what is.
I send you a thorn free rose, @~~~{~~~ as you truly deserve the sweet smell of life to surround you....
Hugs,
Claudia
Oh, and whereas I did coin the phrase "Be Stronger Than, Not Angry At", the reason I have it printed on my checks, and my emails, and I have said it in here so many times is because I don't always get it right and I need the constant reminder!0 -
Dear Gale, so glad you decided to vent with us. Don't know what to say to make you feel better but just know that we are here for you. Sending you cyber hugs and kisses and hoping you feel better soon, Love, Lili0
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