Rhondito
Pearl Clutcher
MississipPea
Posts: 4,798
Jun 25, 2014 19:33:19 GMT
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Post by Rhondito on Nov 15, 2019 2:36:49 GMT
I had a friend say she could never lose her hair. She said she isn’t sure she’d want to go on and that she’d never leave her house. I thought, are you effing kidding me?! It’s HAIR fgs! It does grow back and pretty quickly. I thought it was either the saddest or stupidest thing I had ever heard. While I can't say I don't know if I'd want to go on, mentally I don't know if I can handle losing my hair. So I'm cold-capping to save as much of my hair as possible. I don't want a 1.2cm tumor and 4 chemo treatments to take "me" and my sense of normalcy away.
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Post by elaine on Nov 15, 2019 2:59:30 GMT
I think people who haven't been in the situation or had the situation come fully on them have no idea about how difficult it is. I can't tell you how many people have told me I mutilated myself for having a mastectomy when I had DCIS Stage 0 and 62% chance of genetic breast cancer. Or how many people told me I was getting a free boob job. I stopped responding to them and started just staring at them until they either walked away or realized what they had actually said. I was diagnosed with Stage 1 breast cancer in August and had a lumpectomy. I had my first of 4 chemo treatments on Nov 1 and will then have 6 weeks of radiation followed by 10 years of tamoxifen. Yay.
I had a friend tell me that "As a nurse, anything less than a mastectomy is useless." Someone else said, "That happened to my aunt and then it came back in the other breast..." So I've stopped telling people. I don't need to hear that crap.
I’m very sorry to hear this, rhondito. You have been a consistent support to me and others here. If you need anything that I can give across the miles, just let me know. I hope that the chemo and radiation aren’t too rough. I’ve done the chemo, but not the radiation. There are a number of us here that have though, if you need any support. (((hugs)))
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snowdie
Full Member
Posts: 165
Dec 30, 2018 4:45:59 GMT
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Post by snowdie on Nov 15, 2019 3:00:26 GMT
If it is okay to take this thread in a new direction, what are some of the best words you have had people say to you or your loved one battling cancer?
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Post by AussieMeg on Nov 15, 2019 3:31:01 GMT
I stopped responding to them and started just staring at them until they either walked away or realized what they had actually said. That is the PERFECT response to such stupidity / thoughtlessness.
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Mystie
Pearl Clutcher
Posts: 4,300
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Nov 15, 2019 4:48:01 GMT
Sending you a gentle hug, and I'm glad you vented to us. I've watched my dad battle brain cancer for five years, I've seen what it does to the patient and the people around them...and I still know that I don't know how I'd handle it if it was me in the battle instead of him. I think sometimes people are flippant because they're in denial that such a thing could happen to them. You don't have that luxury, and it changes everything. Hugs again.
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Post by lesserknownpea on Nov 15, 2019 8:21:15 GMT
I had a friend say she could never lose her hair. She said she isn’t sure she’d want to go on and that she’d never leave her house. I thought, are you effing kidding me?! It’s HAIR fgs! It does grow back and pretty quickly. I thought it was either the saddest or stupidest thing I had ever heard. This next one is always said nicely and it probably won’t be a popular sentiment, but it always bothers me a little when I hear someone say about a cancer survivor that they made it because of how hard they fought or they made it because God was by their side. So, the people who didn’t make it didn’t fight hard enough or God didn’t feel like saving them? It always just felt a little like a slap in the face to people who lost or were losing someone to cancer. I am all for fighting to get better and praying if that’s your thing, but some cancers are curable and some just aren’t. I feel incredibly lucky to still be here and I’m grateful that I’ve been cancer-free for five years, but it could have went differently. I strongly agree with you here. My best childhood friend fought her best, but died at 17. My mom was stage 4 at diagnosis. There was no cure for her. It’s a slap in the face to hear people go on and on about how someone else just faought hard enough, or God loved them so much. And my my pet peeve: when people heard my dad had lung cancer, firstwords out of everyone’s mouth: did he smoke? Yes, he started as a teen in the 50’s. He was a kid and no one knew how dangerous it was. But that question sounded like they were blaming my dad and made me so mad. How about just say8ng you’re sorry? Asking how he is? Think about how your words can hurt an hurting person!!!
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craftykitten
Pearl Clutcher
Posts: 4,304
Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Nov 15, 2019 11:36:18 GMT
If it is okay to take this thread in a new direction, what are some of the best words you have had people say to you or your loved one battling cancer? "I'll bring you dinner on Wednesday. What would you like?" "Thought you might like this magazine/book/DVD so I brought it round" "Saw a ... and thought of you. Hope you are coping ok. No need to reply". People are always looking for the words to make it better and you just can't. It is shit, absolutely shit. Just acknowledge that without trying to 'fix' it. What I can bear people to say to me (even knowing that they have the best of intentions) varies depending on the day and how I am coping. Practical things are great. Thing that show you're thinking of them are great. Things that dont require a response are great, so keep asking and inviting even if you don't get an answer.
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craftykitten
Pearl Clutcher
Posts: 4,304
Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Nov 15, 2019 11:40:44 GMT
So far my personal favourite is "god must really hate you." Ain't no answer to that one! 😱 Say it ain’t so! I couldn't make this shit up, honestly. And that was from a relative! I was in the chemo suite one time and heard a woman whispering to her daughter how she wanted to wear a wig because she didn't want to look like "that" - that is, me. People say shit things, including the person on here who said she cringed when she read medical posts because we should all keep it private. My life is too short to care about them any more.
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Post by mikklynn on Nov 15, 2019 12:24:30 GMT
My husband's cancer is incurable. It has spread to the bones and there is nothing to do but slow it down. Yet I get these comments on how they will pray that he gets better and that they are praying for him to get rid of the cancer. I had to cut my sister in law short and explain that he is not getting better and holding his own is all we can hope for. She was all upset and tried to assure me otherwise. I finally just let her have her say and let her have her fantasy. She thinks because she had cancer that she knows all about it. When my DH was diagnosed with stage 4 incurable cancer, my dad was the same way. I finally had to take him aside and tell him his assuring me DH would be fine was not helpful. He meant well, but it was obviously not helping me. Hugs to you and your DH.
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Post by mikklynn on Nov 15, 2019 12:29:59 GMT
I think people who haven't been in the situation or had the situation come fully on them have no idea about how difficult it is. I can't tell you how many people have told me I mutilated myself for having a mastectomy when I had DCIS Stage 0 and 62% chance of genetic breast cancer. Or how many people told me I was getting a free boob job. I stopped responding to them and started just staring at them until they either walked away or realized what they had actually said. I was diagnosed with Stage 1 breast cancer in August and had a lumpectomy. I had my first of 4 chemo treatments on Nov 1 and will then have 6 weeks of radiation followed by 10 years of tamoxifen. Yay.
I had a friend tell me that "As a nurse, anything less than a mastectomy is useless." Someone else said, "That happened to my aunt and then it came back in the other breast..." So I've stopped telling people. I don't need to hear that crap.
I'm especially appalled that a nurse would give you such bad advice! Science, people! And, most importantly, your body, your decision. I wish you the very best as you undergo your radiation treatments.
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Post by mikklynn on Nov 15, 2019 12:35:27 GMT
If it is okay to take this thread in a new direction, what are some of the best words you have had people say to you or your loved one battling cancer? What I have learned, dealing with DH's cancer, is to reach out. Before, I may have hesitated, not wanting to intrude. Now, I know - reach out. Maybe NOT a phone call right away, as we had to turn our phone off due to the number of calls. Send a card, a note, drop off a meal or cookies. Offer to mow the lawn. Show up early and shovel the driveway. Just BE there. Believe me, we remember who did not reach out.
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Post by shevy on Nov 15, 2019 14:50:01 GMT
I had a friend tell me that "As a nurse, anything less than a mastectomy is useless." Someone else said, "That happened to my aunt and then it came back in the other breast..." So I've stopped telling people. I don't need to hear that crap. It's your choice, your body, your life. You make the choice you make with all the information you have at the time you make it. I know a lot of people who chose the choice you've made and lived a long life. The judgement is horrible. I'm sorry they're not supporting your choice.
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moodyblue
Drama Llama
Posts: 6,254
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Nov 15, 2019 15:29:32 GMT
This next one is always said nicely and it probably won’t be a popular sentiment, but it always bothers me a little when I hear someone say about a cancer survivor that they made it because of how hard they fought or they made it because God was by their side. So, the people who didn’t make it didn’t fight hard enough or God didn’t feel like saving them? It always just felt a little like a slap in the face to people who lost or were losing someone to cancer. I am all for fighting to get better and praying if that’s your thing, but some cancers are curable and some just aren’t. I feel incredibly lucky to still be here and I’m grateful that I’ve been cancer-free for five years, but it could have went differently. Along with this is "we are so blessed" because their loved one survived. Like someone who tries so hard to live but can’t beat their cancer is not blessed? Why? Why would one person/family be "blessed" and not another? It is like a huge slap in the face when someone says that and your loved one didn’t make it.
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Post by lisacharlotte on Nov 15, 2019 15:54:11 GMT
I would have not been able to bite my tongue if I had overheard that conversation. I had two doctors tell me in regards to my cancer, “ Well if you are going to get cancer this is the one to get.” No you fucking asshat. Not one person who has ever had cancer has said that! I'm a ten year cervical cancer survivor and I actually have made this comment more than once. It's one the most curable cancers with a common, easily obtained test. The chemo I received had lesser side effects that a lot of cancers, no hair loss, not much in the way of nausea. The worst was radiation since it put me in menopause. However, with such early detection, that's not usually required for cervical cancer. If I had to get cancer, I'm glad it was this one. YMMV.
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bethany102399
Pearl Clutcher
Posts: 3,623
Oct 11, 2014 3:17:29 GMT
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Post by bethany102399 on Nov 15, 2019 16:08:58 GMT
And my my pet peeve: when people heard my dad had lung cancer, firstwords out of everyone’s mouth: did he smoke? Yes, he started as a teen in the 50’s. He was a kid and no one knew how dangerous it was. But that question sounded like they were blaming my dad and made me so mad. How about just say8ng you’re sorry? Asking how he is? Think about how your words can hurt an hurting person!!! OMG, this one sets me off. My dad had lung cancer, and the FIRST thing people say is did he smoke? how the F does it MATTER that yes, he smoked? did he deserve to die in the way he did at 65? the ONLY time I use this as a point is when talking to my own kids about the dangers of smoking. I do say the reason you no longer have either grandparent is they did decide to smoke, and it's dangerous. As to asshat things people say, I'm sorry I honestly am to those of you who have had something so stupid said to you. I will admit to sometimes your foot just fits in your mouth. I was at a funeral last week of the FIL of a close friend. I knew the daughter of the guy who died through my friend, and wanted to express my condolences to her as she was his primary caregiver. Well, the funeral was a LOT harder than I thought it would be and my statement to the daughter of, I've been there recently and I know how hard it is please take care of you, wound up with me crying and telling her to have a good day. yes, I actually said have a good day to someone burying their father. I had totally lost my composure in front of her, felt like an a$$ for then putting my own grief on her during such an emotional time for her, and was just trying to get out of there. I felt like a complete jerk and immediately texted my friend explaining the situation and apologizing profusely to both her and her SIL. So sometimes, people speak in ignorance and sometimes they get diarrhea of the mouth and are just trying to back out of a situation any way they can.
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,798
Jun 25, 2014 19:33:19 GMT
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Post by Rhondito on Nov 15, 2019 16:19:47 GMT
Just BE there. Believe me, we remember who did not reach out. My best friend told me I wouldn't have to go through this alone. A week after my surgery she started dating a new guy - I haven't seen her in two months.
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Post by curiouscrafter on Nov 15, 2019 19:21:42 GMT
I'm not defending what they were saying in any way. However, coming from someone that has not had one close person to me be affected by cancer (I'm 52 yrs old), its really hard to process the extent of it all. I've never been with someone during diagnosis or treatment. I've heard peoples stories of course, and I have huge empathy for anyone dealing with a medical issue that is debilitating (short term or long term). I also don't want to sound ignorant, but I do believe that until you've either gone thru it yourself, or been holding the hand of someone that has, or living with someone that is experiencing it - you just don't get the full picture.
My office recently hosted a seminar to those that have never been affected by cancer (for themself or a family member) (specifically it was breast cancer during October awareness month), but how to help, things to say, what to expect, etc. It didn't end up being what I hoped, but I appreciate them hosting and getting the word out about how to support people.
I'm sorry you had to overhear their conversations as it would be upsetting to hear.
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Post by curiouscrafter on Nov 15, 2019 19:23:06 GMT
I had a friend say she could never lose her hair. She said she isn’t sure she’d want to go on and that she’d never leave her house. I thought, are you effing kidding me?! It’s HAIR fgs! It does grow back and pretty quickly. I thought it was either the saddest or stupidest thing I had ever heard. While I can't say I don't know if I'd want to go on, mentally I don't know if I can handle losing my hair. So I'm cold-capping to save as much of my hair as possible. I don't want a 1.2cm tumor and 4 chemo treatments to take "me" and my sense of normalcy away. I had never heard of cold-capping until recently when a woman at work did it. It worked wonderful for her, a bit of thinning but overall you couldn't tell any difference. Good luck!
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Post by mikklynn on Nov 15, 2019 19:37:46 GMT
Just BE there. Believe me, we remember who did not reach out. My best friend told me I wouldn't have to go through this alone. A week after my surgery she started dating a new guy - I haven't seen her in two months. Oh, that is awful. I am so sorry. I hope you have a lot of other support.
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Post by pjaye on Nov 15, 2019 23:25:03 GMT
FS! Sometimes I think you get such a hard-on over an opportunity to play the biggest baddest bitch in the room that when the blood leaves your brain to flood your nether regions your reading comprehension suffers. Susan said that she was willing to try anything. She didn’t say that anyone else should feel that way, but that that was her reality. Her reality. Birdhouse a Lady was also very clear that her response was about HER reality in dealing with medical issues with HER CHILD. She didn’t say that other people had to do the same thing with their children. Rude and arrogant? Look in the mirror. You are a royal bitch here. Don't you ever get tired of playing the tantrum throwing irrational victim? Time to grow the fuck up and not always act like a spoiled brat who figuratively throws herself on the ground and has a melt down every.single.time you read something you don't like. I'm surprised you didn't dig up some slight from 15 years ago that you have never let go of so you can once again claim you were bullied and try to rally the the troops - that is your MO after all. Secondly, google female anatomy because you clearly haven't used yours in quite some time and have forgotten that women do not have a penis, do not get hard ons...and what sort of fucked up brain do you have that even goes there when the topic is people with cancer? Your response is not to make a logical argument or to disagree, but to have a tantrum "penis/sex/hardon/bitch bitch bitch" No wonder no-one takes anything you have to say seriously because you just become a blathering irrational fool every time you disagree with someone. Is saying I have a penis an insult? Maybe it is when you are 10yo, but you've had 60+ years to surely come up with something better than that. The topic is cancer and you're using sexual analogies and dicks and hard ons. What the actual fuck is wrong in your brain? My point was quite clear, the OP was calling out a conversation she overhead as clueless and it made her angry, but then fails to recognise that the comments she made will be seen as equally offensive by another person who has cancer. No-one gets to be the expert on any one else's cancer and the choices they will make. Saying " I would do anything" is completely different to saying "just wait, when it happens to them they will do anything". It is simply not true and no-one can predict what anyone else with cancer will do. I have seen it in both my professional and personal life. My personal experience is my father, riddled with cancer, begging the doctor to try anything (trials, different drugs etc) because he wanted to live. My father who a few days later was then literally clutching on to my arm and BEGGING me not to send him for radiation. Saying over and over "please, please please, I can't don't make me, I can't, please darling please" The man who wanted to try everything had hit his limit. He couldn't do it mentally or physically any longer. I told him he wouldn't have to, and crying - I canceled all his upcoming radiation appointments. So don't fucking come at me about this topic, I've lived through someone I love making that decision and helped him to make it and then had to explain the decision to my sobbing mother. So yes, comments like "you will do anything they throw at you" and "they'll change their mind when it happens to them" ARE ignorant and arrogant to someone who has dealt with a loved one who did not do that. My father didn't give up, he didn't choose to die, he just simply could not do it anymore and my role as his daughter and advocate was to support him. Other people failing to recognise that...makes it qualify for "stupid shit people say about cancer"
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Post by elaine on Nov 15, 2019 23:40:24 GMT
FS! Sometimes I think you get such a hard-on over an opportunity to play the biggest baddest bitch in the room that when the blood leaves your brain to flood your nether regions your reading comprehension suffers. Susan said that she was willing to try anything. She didn’t say that anyone else should feel that way, but that that was her reality. Her reality. Birdhouse a Lady was also very clear that her response was about HER reality in dealing with medical issues with HER CHILD. She didn’t say that other people had to do the same thing with their children. Rude and arrogant? Look in the mirror. You are a royal bitch here. Don't you ever get tired of playing the tantrum throwing irrational victim? Time to grow the fuck up and not always act like a spoiled brat who figuratively throws herself on the ground and has a melt down every.single.time you read something you don't like. I'm surprised you didn't dig up some slight from 15 years ago that you have never let go of so you can once again claim you were bullied and try to rally the the troops - that is your MO after all. Secondly, google female anatomy because you clearly haven't used yours in quite some time and have forgotten that women do not have a penis, do not get hard ons...and what sort of fucked up brain do you have that even goes there when the topic is people with cancer? Your response is not to make a logical argument or to disagree, but to have a tantrum "penis/sex/hardon/bitch bitch bitch" No wonder no-one takes anything you have to say seriously because you just become a blathering irrational fool every time you disagree with someone. Is saying I have a penis an insult? Maybe it is when you are 10yo, but you've had 60+ years to surely come up with something better than that. The topic is cancer and you're using sexual analogies and dicks and hard ons. What the actual fuck is wrong in your brain? My point was quite clear, the OP was calling out a conversation she overhead as clueless and it made her angry, but then fails to recognise that the comments she made will be seen as equally offensive by another person who has cancer. No-one gets to be the expert on any one else's cancer and the choices they will make. Saying "I would do anything" is completely different to saying "just wait, when it happens to them they will do anything". It is simply not true and no-one can predict what anyone else with cancer will do. I have seen it in both my professional and personal life. My personal experience is my father, riddled with cancer, begging the doctor to try anything (trials, different drugs etc) because he wanted to live. My father who a few days later was then literally clutching on to my arm and BEGGING me not to send him for radiation. Saying over and over "please, please please, I can't don't make me, I can't, please darling please" The man who wanted to try everything had hit his limit. He couldn't do it mentally or physically any longer. I told him he wouldn't have to, and crying - I canceled all his upcoming radiation appointments. So don't fucking come at me about this topic, I've lived through someone I love making that decision and helped him to make it and then had to explain the decision to my sobbing mother. So yes, comments like "you will do anything they throw at you" and "they'll change their mind when it happens to them" ARE ignorant and arrogant to someone who has dealt with a loved one who did not do that. My father didn't give up, he didn't choose to die, he just simply could not do it anymore and my role as his daughter and advocate was to support him. Other people failing to recognise that...makes it qualify for "stupid shit people say about cancer" Reading comprehension is important. Susan said “As someone who had cancer, surgery, radiation and chemo...dying was not an option for me. I was scared shitless with every treatment and visit (I still am), but I was so desperate to live out my life that I was willing to try whatever they threw at me.”She spoke about HER experience. No one else’s. And you said she was rude and arrogant and stupid. Yesterday. Not 15 years ago. You misread or misunderstood what she said, were a bitch, and were out of line. She worded it EXACTLY as you said she should above. Nice try at deflection to put it on me. You owe Susan an apology. I’m sorry about your father. Cancer sucks. It doesn’t give you a pass to say whatever the heck you want to people on the topic.
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Post by pjaye on Nov 15, 2019 23:43:34 GMT
I’m sorry about your father. Cancer sucks. It doesn’t give you a pass to say whatever the heck you want to people on the topic. yeah whatever, I'm sorry you have cancer - doesn't give you the right to be a cunt to people who have a different opinion to yours.
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Post by pjaye on Nov 15, 2019 23:45:42 GMT
You owe Susan an apology. don't hold your breath for that
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Post by elaine on Nov 15, 2019 23:47:11 GMT
I’m sorry about your father. Cancer sucks. It doesn’t give you a pass to say whatever the heck you want to people on the topic. yeah whatever, I'm sorry you have cancer - doesn't give you the right to be a cunt to people who have a different opinion to yours. I don’t have a problem with people with a different opinion. Just with you for jumping on Susan for your issues with comprehension. She doesn’t deserve your shit.
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Post by elaine on Nov 15, 2019 23:48:30 GMT
You owe Susan an apology. don't hold your breath for that Oh I won’t. It says more about you than me.
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Post by scrappintoee on Nov 16, 2019 1:15:53 GMT
I just wanna send lots of (( HUGS ))
to ~Susan~ and all of you who have been through this yourself and/or with a loved one.
I can't tell you how many people have told me I mutilated myself for having a mastectomy when I had DCIS Stage 0 and 62% chance of genetic breast cancer. Or how many people told me I was getting a free boob job.
Umm.....I seriously do NOT understand the crap some people say !!!!!!! Are you freaking KIDDING me that they used the word "MUTILATED?" annnd...."FREE BOOB JOB!?" My dear friend grieved the loss of her breast, HATED the scar it left behind, worried and cried that her husband would be disgusted by it, etc. It was HORRIBLE for her. But THEN----she decided to go for a "free boob job" --- Her reconstructive surgeon and a few nurses told her that her mastectomy surgeon was a "BUTCHER"...."didn't know what he was doing" etc etc. Yeaaa, that REALLY helped her to hear all of that! THEN, to add to her fun, her reconstruction surgery ended up having MAJOR problems with the drains, she had several serious infections, more surgery, more problematic drains, more antobiotics that didn't work, etc. etc, etc. She obviously went through SO MUCH after attempting reconstruction, she regretted her initial decision, blamed herself, worried she was too vain, etc, etc, Poor thing has been through HELL and although this all startred 9 years ago, she IS still alive, but is NOT doing well for so many reasons. She takes oral chemo that has terrible side effects, so she sometimes struggles with how long she can handle it all. It is heartbreaking!!!!!!!
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