Lack of Support
I finished chemo and radiation therapy 3 months ago for Invasive Ductal Carcinoma breast cancer. I have been on Letrozole AI since January. I have been having significant lower back pain for last couple of months with some (embarrassing) incontinence. So... I went to my onc today to see if the Letrozole is causing this pain. She advised me to go off AI for 3 weeks and to also get an MRI of lower back. I won't lie, this makes me nervous and fearful for recurrence of secondary cancer. When I told family and best friend, they all act like it is no big deal and that I should be done with cancer....they have MOVED ON and I'm still dealing with daily trying to get back into some sort of life post cancer treatment. My friend actually said, "I don't want to hear it!" and changed the subject. Anyone else ever had this reaction from family and friends?
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No support.....
Hello....I have a friend who acts exactly as your good friend and yes, it upsets me.....After all I've been through and still am going through, she doesn't want to hear my medical problems......She says that "she doesn't like to hear about these things." Well, who does? She'd rather talk about how her lawn needs to be mowed, what she bought at the clothing store, etc. Seems she doesn't acknowledge my situation at all....so I don't go into any details or particulars with this person.
My other friend is exactly the opposite.....She's there for me whenever I need her, most importantly to LISTEN to me talk about my breast cancer and treatment, what the doctor had to say, etc. etc. Now that's what I call a TRUE friend! As a matter of fact she's more than willing to go with me to receive my treatments. I first meet with the Oncologist and she writes down the answers that he gives to my questions. Then she accompanies me and sits with me while I get my infusions........I always tell her that she can leave and that I can watch TV but she insists on staying and keeping me company. God Bless her!
Seems some people can help you more than others.....and I guess we just have to accept it......but I agree with you that it hurts. Try to not dwell on the insensitive people......Better times are coming.......Oh...and did you ever think that maybe they're afraid that something like this will happen to them and that they'd just as soon not talk to you about what you're going through because maybe, just maybe they might have to go through something similar?? They want to keep those thoughts away.....! Hang in there......!!! Kats2
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As hard as it is to not take
As hard as it is to not take it personal-some people just dont' know how to handle the word cancer-or talk about anything bad. (be it death, cancer, etc) Have you told her/ him it upsets you? IF she / he doesn't get it-they may never will GET it>
I am so sorry your friend is like that...you will get great support here , even cyber HUGs!
Thinking of you
Denise
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Yes it can be quite hurtful,
Yes it can be quite hurtful, a portion of these it is their way of dealing with you because they are terrified of getting it themselves. Some just don't 'get it', some but very few I suppose don't actually care........... Those who don't care would be rare don't you think.
For instance, my son didn't ask even once how I was and was afraid to see me without hair. But he was the one who noticed I struggled a few times and literally was there in a flash to physically help me, he is of adult age. Plus I know he researched in depth what I had. But he couldn't show his feelings at all. He is very emotional but guards that fact to protect himself. If I lost my husband he would sort everything out for me in an instant. My daughter never asked either but was heart broken and talked to her dad about the cancer process. Now if I ever falter about anything at all in life and mention it to her, she is the one who talks positively and upbeat and acts maturely. This is funny as she was never like that until I had the cancer and her father had a heart attack at the same time. They both had a reality check and we all got our priorities in order.
I sailed through treatment, was incredibly lucky. Friends and family were fantastic, honestly. But some I do feel don't want to chat about the down the road stuff. Others I can say anything too. But I always remember others have their own issues and always remember to ask about them too and never make it all about me.
if you have ANY fears about pain you do exactly what you are doing. Always get it checked out or at least bring it to your cancer treatment groups attention. Every time even if it is nothing to worry about in the end. Most of us get a feeling something isnt right, could just be a smaller problem and not a recurrence but we must verify it.
Pleade don't worry too much, womens nature is to still care about others, what they think or don't think, know people's strengths and weaknesses even when we are ill ourselves. I think that's because WE ARE CARING AND JUST PLAIN BRILLIANT, SO THERE, you take care and off load to the ones who listen. (Including us)
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I have had the same experience...
At time of diagnosis I was a newlywed of 4 months and my husband was our temple president (we were in our late 50s), so everyone at the temple knew my health issues. The congregation was immensely helpful and it was amazing to me at how many women shared their personal breast cancer stories--I was not alone.
I found while I was in treatment that I didn't want to hear about others' trivial problems which seems so silly in comparison to the big issues of Breast Cancer that I was dealing with. There are some friends who I am no longer in touch with--no loss as I think they were "fairweather friends" with whom I no longer feel the need to be friendly.
I think that we find people to support us at different stages of our life and it is totally OK to let go of those people who are not supportive.
Hugs,
JoAnn
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Friend “housecleaning” is what I called itjoannstar said:I have had the same experience...
opse...double post
And I cleaned house real good. I chose to not tell family and friends about my breast cancer till the day I came home from the hospital. I didn’t want to worry anyone until I knew I would be ok. I had a bilateral mastectomy.
I have two sister in laws and to this day I have not heard one word from them to see how I am doing or if there is anything they could do for me to help out.
I had neighbors that I would cook for and help out with their kids when they got into a jam and couldn’t find a sitter. I never heard one word from them nor received a cake or cookies as a good well jester.
I’m almost now 1 year post-op and have a whole new group of friends. Some that had cancer or knew someone with cancer.
There are givers and takers in this world and I had no time for the takers. Surround yourself with people that want to be your friend and send the ones that are not supportive show them the exit door.
I wish you peace and happiness.
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Glad and Sad*new4daisy said:thank you so much everybody
thank you so much everybody for your encouragement! I wish I would have found this site a year ago when I was diagnosed. All of you are such a blessing. thanks again for your support and sharing your experiences. Blessings to you all
Glad you found us Daisy....but Sad it happened to you. People don't know what to say and some that you once thought were your friends were really just acquaintances. We all understand and know that once you have this dread disease you are never really cured since it loves to come back....even years and years later. I'm sorry you have had a few bad experiences but so have we all at one time or other. Hang in there and please keep sharing with the rest of us .... Prayers for Strength and Courage, Glo
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Yes!GlowMore said:Glad and Sad*
Glad you found us Daisy....but Sad it happened to you. People don't know what to say and some that you once thought were your friends were really just acquaintances. We all understand and know that once you have this dread disease you are never really cured since it loves to come back....even years and years later. I'm sorry you have had a few bad experiences but so have we all at one time or other. Hang in there and please keep sharing with the rest of us .... Prayers for Strength and Courage, Glo
Once treatment is done, people who have not experienced anything this life changing believe that as soon as treatment is over, everything goes back the way it was. That is not the reality for most of us. We have endured months of receiving poisons to our bodies and just because that is over with, our bodies have changed.
I have friends and family who have told me if I just get up every morning and just don'tthink about it, I will feel better. For me, this is not a reality, I have stage 4 that is throughout my bones, even 100 mg of fentanyl lessons the pain, but does not make it go away. I use to have hurt feelings, now I try really hard to remember, they have no clue as to what we go thru!
If someone asks how I am doing, I usually say fine. I have to walk with a cane, get tired very easily, but it makes others uncomfortable if I say otherwise. I really wish they wouldn't ask unless they really wanted to k n ow! So now I just an I left and say I am fine!
Try not to take'm it too personal. As hard as that may be, it is not worth your time in being upset over it!
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Morgamed reading your post Imorgamed said:Friend “housecleaning” is what I called it
And I cleaned house real good. I chose to not tell family and friends about my breast cancer till the day I came home from the hospital. I didn’t want to worry anyone until I knew I would be ok. I had a bilateral mastectomy.
I have two sister in laws and to this day I have not heard one word from them to see how I am doing or if there is anything they could do for me to help out.
I had neighbors that I would cook for and help out with their kids when they got into a jam and couldn’t find a sitter. I never heard one word from them nor received a cake or cookies as a good well jester.
I’m almost now 1 year post-op and have a whole new group of friends. Some that had cancer or knew someone with cancer.
There are givers and takers in this world and I had no time for the takers. Surround yourself with people that want to be your friend and send the ones that are not supportive show them the exit door.
I wish you peace and happiness.
Morgamed reading your post I felt sad you went through this initially without telling anyone. You must be made of strong stuff. It is a shock when people you thought you knew well show their true colors. I get some are embarrassed, or frightened etc. I can handle that, but those who give you the cold shoulder are doomed for a reality check when they need help which they will one day. You now I actually had neighbors husbands walk over to me whilst walking the dog and such asking how I was. I was stunned, as this subject is difficult for many males to even mention. I will never forget that it meant a lot to me. Then there is the funny stuff. One day walking with a head cover on a young child in a passing car shouted to his mum driving, look mum there's Peter Pan.......... Hilarious.
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came back to check in and see
came back to check in and see how your are doing..
Denise
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Thanks Denise for checkingdisneyfan2008 said:came back to check in and see
came back to check in and see how your are doing..
Denise
Thanks Denise for checking in. You guys are the best! im doing ok. Still waiting on MRI results regarding back pain and going off Letrozole hasn't seemed to help. I'm doing well with not worrying about it....just trying to be positive where I can. Thanks again. Have a blessed evening.
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They have no idea . . .new4daisy said:Thanks Denise for checking
Thanks Denise for checking in. You guys are the best! im doing ok. Still waiting on MRI results regarding back pain and going off Letrozole hasn't seemed to help. I'm doing well with not worrying about it....just trying to be positive where I can. Thanks again. Have a blessed evening.
Carol is right. People have no idea what anyone else is going through physically or emotionally. Even we who have gone through it have been effected on so many different levels that we can relate to parts of it, but we CAN and DO relate and understand. I hope your MRI comes out clean or maybe shows something non-cancer related that can be easily fixed.
I experienced some very hurtful comments during my "ordeal" from 2 women whom I considered my best friends. I've finally (after almost 5 years) been able to let that go and appreciate that they were with me all along the way, even if the kind of support they provided was often more hurtful than helpful. I don't share much with them that has a thing to do with cancer (mine or someone else's).
I really don't think is is a good idea to hurt someone who is already hurting, or to dismiss what they're feeling. It's really better to say nothing. I hope I've now learned to respond by coming back to certain comments with a question: "Why did you just say that?" These folks will typically come back with some hostile remark like "well, I think it's ridiculous . . . blah, blah, blah and think you need to hear blah, blah, blah". Then you can respond with what you need - something simple like "I just need you to listen to MY feelings and I don't need to be told how you think I should feel". Or something like that. If they have the gall to say hurtful things to you, you should be able to ask why and say that what they just said hurt your feelings and you really don't need these types of comments.
We were all pretty naive when we started along this path. Remember that they still are, but try to find a way (without anger) to let them know how what they say makes you feel.
Good grief! Of course you're worried about the MRI and back pain. And they would be worried too. Maybe not about a cancer recurrence, but worried about what it might be. I don't believe anyone who says they don't worry until they know there's something to worry about. Maybe some more than others, but no one would go to a doctor in the first place if they weren't worried about the pain. Let us know your results, please.
Suzanne
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I know how you feel
Its a sad thing when we as cancer survivors don't have the understanding of the "what if". On June 11, 2015 I found out I was in remission. Suddenly, I felt like I had to go back to normal.. BUT honestly, who can be same person they once were before cancer. I feel that my family expects me to MOVE ON too, but again how can you?? My biggest fear is not being able to care for my family as I once did, or finish graduate school because of side effects from chemo or radiation. Its funny, when you are sick, you are sooo focused on getting better..that when you are in remission, what are you suppose to do next. I know excatly how you feel, because I do worry about the "what if". Its hard not too. So for now, I'm taking it one day at time, because that's all I can do. Good luck with everything.
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MRI Results
Just came from my oncologist today. The MRI did not show any cancer in my back...thank God! I do have arthritis in lower back, degenterative buldging discs etc causing some of the pain. However, I feel great after being off Letrozole the last 3 weeks. Back pain decreased SIGNIFICANTLY and incontinence disappeared as well - crazy how that Letrozole affected me! With the back pain already, my onc said I need to switch from AI's (with joint/back pain) to tamoxifen, I start tomorrow. Since I'm post menopausal I'm concerned that maybe tamoxifen won't protect me from recurrence as well as an AI but with the back pain....don't think AI's are an option for me anymore. Anyone else post menopausal and on tamoxifen? Do I take this one for 5 years like the AIs?
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yes. pretty much. the very
yes. pretty much. the very few people whp had some tme for me when i went through the first round disappeared in months. now i am 2 years in treatment, await more surgeries and apart from my old dad, god bless him, there does not seem to be what i would like to. and people belittle it. they refuse to discuss it. i have terrible side effects form medicines but am in this alone.
the only thing i can offer you is - aprt from the reassuranc ethat this happens - is a tip for a book, that someone gave me and i bought it as an ebook, that is about this very thing. called
After Breast Cancer: A Common-Sense Guide to Life After Treatment it talks about the fact that after treatment people go through hard things emotionally and the support diminishes
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i was not menopusal but thenew4daisy said:MRI Results
Just came from my oncologist today. The MRI did not show any cancer in my back...thank God! I do have arthritis in lower back, degenterative buldging discs etc causing some of the pain. However, I feel great after being off Letrozole the last 3 weeks. Back pain decreased SIGNIFICANTLY and incontinence disappeared as well - crazy how that Letrozole affected me! With the back pain already, my onc said I need to switch from AI's (with joint/back pain) to tamoxifen, I start tomorrow. Since I'm post menopausal I'm concerned that maybe tamoxifen won't protect me from recurrence as well as an AI but with the back pain....don't think AI's are an option for me anymore. Anyone else post menopausal and on tamoxifen? Do I take this one for 5 years like the AIs?
i was not menopusal but the oncologist actually put me on zoladex shots which caused menopause, and i have tamoxifen with it. the side effects are pretty bad but it is supposed to prevent reoccurence
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very well said.joannstar said:I have had the same experience...
At time of diagnosis I was a newlywed of 4 months and my husband was our temple president (we were in our late 50s), so everyone at the temple knew my health issues. The congregation was immensely helpful and it was amazing to me at how many women shared their personal breast cancer stories--I was not alone.
I found while I was in treatment that I didn't want to hear about others' trivial problems which seems so silly in comparison to the big issues of Breast Cancer that I was dealing with. There are some friends who I am no longer in touch with--no loss as I think they were "fairweather friends" with whom I no longer feel the need to be friendly.
I think that we find people to support us at different stages of our life and it is totally OK to let go of those people who are not supportive.
Hugs,
JoAnn
very well said.
0
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