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How to respond when others don't have breast cancer

Hello Ladies!

I am not normally lost for words, but I have had two situations recently that have tested my ability to bite my tongue and make sure I say the right thing that won't cause offence.

The first incident happened recently when I was waiting for my back exercise class at one of my local hospitals. A friend called me up and was scared that her daughter has breast cancer (she had skin cancer and beat that some years ago). She has been very kind and supportive of me, which I really appreciate. But then she started quizzing me about what the doctors said to her daughter and did they say the same to me? What does a 3-D mammogram involve? What does it mean to have dense breasts? I started getting flashbacks to what I went through earlier this year when this whole nightmare began. She then asked if it was OK to talk about my experience and I told her it wasn't. She was apologetic and felt awful, but so did I.

The second incident happened today. A different friend (who lives in America; it's been years since I last saw her) emailed to say her mammogram was all clear. She knows about my diagnosis. I haven't responded to her yet. It just feels like I have been kicked in the teeth. It's not that I am not happy to support friends or wish them well, but it just reminds me of my situation. Does anyone else feel this way? I feel so selfish right now.

Thanks for listening,

Sophie ❤

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Eww, I know how you feel. But I don’t mean about you feeling selfish. I mean about people being obtuse and thoughtless ,When people go on and on about cancer, and they know my situation, I wonder what the hell is wrong with them. Do they think because I’m a member of that club they can just go on and say anything? Yes, I also feel like I was kicked in the gut. Once I was with a group of my colleagues, nurses no less, who were going on and on about it over lunch. It was either leave or ask them to change the subject. So I asked them to please change the subject.

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Thank you for understanding! I'm glad your colleagues got the hint and changed the subject. We don't need to have it brought up all the time in conversation. I just felt irrational and selfish to feel this way when two friends were reaching out to me. Maybe it's because I always come across as so cheerful and am at the point where I can talk about the disease and not burst into tears (In fact, I often joke about it!) I texted my first friend back and wished her daughter well and I just emailed my second friend and told her it was good news she got the all-clear. I just don't want to talk about it anymore. I hope that will be the end of it. I can relate to women, such as yourself who are in the same boat as me, not women who had great mammogram results and can pick up where they left off and carry on with their lives.

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You did the gracious thing. Your friends, however well intentioned, are not considering how the conversation might affect you. Perhaps they are clueless, and of course they’ll never know the thin line we walk between living a “normal” life and being overwhelmed by our diagnosis. Bottom line, you are not selfish and hardly irrational. Trust your gut. Protect your feelings and well being. Perhaps if these are close friends you can talk to them about It, but only if it would help you.

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You have made me feel better. Thank you! You're right. They cannot understand what we go through on a daily basis because they have not gone through it themselves. I just think they thought it would be OK to reach out to me, as I have breast cancer, so I could help, offer advice and support. I am doing all I can to protect myself and keep a level head on my shoulders because at the end of the day I cannot crumble. I have to keep going! I feel better talking to others in the same situation as me. My sister-in-law has colon cancer, so we keep in regular contact and she is a tower of support. She tells me how she is getting on with chemotherapy, and I fill her in on my latest treatments.

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Hi Sophie

You’re not being selfish at all..people just don’t get it I’m afraid..several have asked me when do I finish treatment and things like that

You have to look after you and your feelings ..the smallest thing like a little comment about mammograms or people beating cancer can set me off

Barb xx

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Hi Barb,

Thank you! I feel the same way when I hear about mammograms and people "beating" cancer. I ran into one of the ladies who attended my back exercise classes when I was out for a meal this evening with my husband (small world!) and she was talking about the regularity of mammograms and how unfair it is that women over a certain age are not called for mammograms any longer. I told her they are not routinely offered to women in their 30s. I don't think she knew what to say to that!

Someone also asked me if I am almost finished with treatment the other day. I normally just tell people that treatment is ongoing and leave it at that. Once you are diagnosed, people want to know when treatment will start. Then when you are having treatment it's "when is treatment ending?" and you have to be careful how you respond. I don't want to be rude when people are genuinely interested and care, but at the same time I need to protect myself and my feelings.

Sophie x

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Maybe I am being rude. The woman across the street knows my diagnosis and Gd knows I told her the prognosis. When she got early stage breast cancer she came over in a panic and I went thru it with her and calmed her down. She kept telling me about her fears and treatments and how awful it all was. She kept comparing our experiences. One day I couldn’t do it anymore and I said “We do not have the same disease. You’re going to be ok and I’m going to die.” Worked like a charm. Oops!

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That was so kind of you to help out your neighbour. I think I would have struggled in the same situation and not been able to do as much as you did.

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I probably sound like a biotch, but she totally glossed over the fact I was a 4 and it went on for months. I have learned I have to protect myself emotionally and physically . We still talk.

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It sounds to me that your neighbour was so consumed by her own diagnosis that she failed to see how you were feeling about yours. I'm glad you still talk to her and can be amicable with her.

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I love your response

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I recently saw on the news that some celebrity (can't remember who) was bragging about beating breast cancer. My response to my husband was, "She better knock on wood!".

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I can only imagine the relief people must feel if they believe they have "beaten" cancer. But how often do we hear about it recurring?

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Too often. Sadly.

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I also thought I'd beaten it....then 10 years 8 months and severe back pain later, was diagnosed stage 4 with more tumors than could be counted in my spine,pelvis, scapula, skull, ribs, breast bone, clavicles and femur head...all bone, no organs so far. I've been bone only for 4 1/2 years and know that I'm terminally ill but I'm embarrassed to say that I find myself jealous of patients with early stage bc knowing they will go through treatment and think they are cured (been there, done that) and my treatments will never end until I choose to quit or die. My biggest pet peeve is people who say they're going to pray for my recovery AFTER I tell them I'm terminal. MBC can't be prayed away and I would very much like to punch them but I don't have the strength for that even if I was that kind of person, so I smile and say, "thank you" and usually turn away and leave before the tears fall because they don't get it. I didn't when I was stage 2...thought I did...but now I know I didn't and have to be patient with early stage people and especially with people who haven't been touched by this disease. They can't know what it's like so I try to give them a smile and kindness all the while knowing how ignorant of our disease they are. They don't know what they don't know and I try to remember that I've had a total of 15 years to figure it out. It is not selfish to say you don't want to talk about it, that you're having a bad day, or to ask for a subject change. Taking care of yourself is a necessity, not selfishness. Sending hugs and good dreams.

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Thank you for your message. It is difficult living with this disease and other people's responses. I just think that so many people hear the word "cancer" and assume that treatment is temporary and then the patient is cured. I do what I can to protect myself and I lean on my husband for support.

Take care,

Sophie ❤

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I was going to say it, but glad you did. I was a stage 2/3 and now I am a 4. Not cureable, but manageable is what I am told. What starts as breast cancer and looks so good after all the chemo and radiation comes back years later all over the skeletal system and now is a 4.

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I have heard of so many ladies in your position who started out with early stage breast cancer and then it came back as metastatic cancer. I don't know why when it looks like it has been cured.

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I believed I had beaten it. Never worried about it returning. I was blindsided by the stage 4 diagnosis. Hannah

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I'm sorry to hear that, Hannah. Mine was initially thought to be primary breast cancer in March, but then I learned in May that it was metastatic. It must be devastating to have to go through this a second time when you have been told you are cured. Sophie

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Mine was 17 years apart but stage 1, no lymph nodes, and good pathology. I thought they were wrong when they said it had returned. Now, it is in my lungs. So far Ibrance/letrozole is working. I was told at Moffitt Cancer Center that as a general rule I could only expect a maximum of two years from any one chemo. It pleases me to see that some have been on it longer. Good luck and hugs to all. Hannah

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You are not alone. I don't even believe anymore that there is any cure, a remission is not a cure. It's there in the blood and will be back. The good news is that there are many more targeted drugs to put us in remission so we can live longer and enjoy life whereas years ago these drugs were not available and a future with cancer was only a pipedream.

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I’ve dealt w some strange responses. We all do...I try to put myself in the other persons shoes. Here’s one: 3 of us at my office we’re diagnosed stage 2. 1 is going on year 6 clear. When I told her of my new diagnosis...she asked lots of questions. “Where was it originally? What size? Did you have mastectomy? Remove ovaries?”. I know why she asked...because when I was stage 2 and heard someone was State 4 (or worse...). I wanted to know everything that I did was different...I wanted to know that I wouldn’t be stage 4. But....then it happened.

Here’s the second story. I’m at an event honoring BC survivors and warriors. The survivor assumed I was stage 2. When I told her 4, this look of horror came over her. I said “but I’m ok. I’m doing good”. And honestly, I was just as ignorant. I assumed all stage 4 people looked sick, bald...but now I know.

I don’t think they mean harm. Reflect on your feelings. I thought of both of these events for a couple days. But then I just move on...still motivated that I’ll teach some people about MBC. If that’s the purpose of this, then ok-I’ll do it.

🤗

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Hi Snowcone,

That must have been difficult, especially when you were asked by someone who was stage 2 about your new diagnosis. But you are right though. Many act out of ignorance and mean no harm. I didn't think much about stage 4 cancer before my diagnosis, because it never really crossed my mind. Other than losing my mum to cancer, I didn't think it would happen to me because I was always so healthy and didn't meet any of the risk factors that were mentioned to me. I was a young woman living my life without thinking much about my mortality.

Sophie x

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Can't live life in fear, it isn't living. Thanks for sharing this and so sorry for your loss.

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You're right! Thank you. I live a full and happy life and hope you do too. Thanks also for your condolences. My mum died in 2004.

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People seem to think you are an expert because you have breast cancer, not understanding how different we are from others. I was excited for a friend who was finally given the all clear after 10 years. She has been a great support to me. Others, who I don’t really now ask questions and make me feel bad because I’m not having chemo, like I’m lying and don’t really have cancer. I know most people mean well but they don’t stop and think.

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Hi Sarcie,

That has been my experience too. I'm now considered an expert on breast cancer, but I'm not! I understand about my diagnosis and condition as I am oestrogen receptor-positive, but I couldn't tell you about triple negative or any other types of breast cancer. All I have to go on is my own personal experience.

That's good that you have a supportive friend to help you. I am shocked and saddened to hear about how others make you feel bad about not having chemotherapy though. Why would you lie about having cancer? Some people have treated me the same. As soon as I mention the word "cancer", their eyes dart to my head and I then often make a joke about still having my hair because I am not having chemotherapy. I didn't know anything about hormone therapy before my diagnosis, so I don't expect others to know either. It comes as quite a shock to some people that there are so many different ways to treat cancer and that not all patients have chemotherapy. It was offered to me in the beginning. It was either that or hormone therapy, and I chose hormone therapy. I'm glad I did, because I have a very good quality of life, I am still able to work and the treatment is working. I hope yours is too.

Take care,

Sophie x

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I did not do chemo yet. I was diagnosed 2016 w stage 2 and just stage 4 since January. My original tumor analysis said I had a 15% chance of recurrence. With chemo, it was lowered to 13%. So, I did not go that route. Mostly hormone therapy (that comes in a yellow bag that says chemotherapy).

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I had the option of chemotherapy too, but went for hormone therapy instead. I don't want to have chemotherapy if I can avoid it. There are a lot of options available when it comes to hormone therapy, so let's hope we can both stick with that!

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4 years ago I had a lumpectomy and they found two lumps, one atop the other. So taking the whole breast was not even a consideration at that time. Now I am 4 and would this have made a difference? No, because MBC travels to bones more likely than anywhere else.

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I've been in those situations when someone says their mammogram was clear. It felt like they were bragging about it, but I know they weren't. People have NO idea what it feels like to be in our situation. I hope you have a better day today! Hugs!

Colleen

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Thank you for your response! I think that when it comes to clear mammogram results people should share their news with someone who does not have breast cancer. I wouldn't wish breast cancer on anyone, but I also cannot face other people's joy and relief that they are not in my position. I am finished with work for today, which is a relief because it's been pouring with rain all morning and I have been out in it. I hope that you have a good day too!

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I think what you said is key to how we feel when in these situations: we have a hard time when people are glad they aren’t us. They don’t intend it that way, but that is what it feels like. For us it is very personal and cuts deeply. I agree that people should consider their audience and edit themselves.

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Yes, that is exactly it! You are spot on. When people express relief that they are not going through the same as us that is what hurts. I had a hard time trying to process what it was that was actually bothering me, but then I figured it out and the penny dropped. At first, I thought I was being selfish, but then I realised that wasn't it at all. So I really feel that when someone gets a good mammogram result or if their biopsy came back clear, they should share the news with someone else who is not going through cancer.

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Hi Soph,

Do NOT feel selfish at all. I am the first one to admit that I am still in a bitter stage (was just re-diagnosed in September; about to start my 2nd cycle of Ibrance).

You have a lot to wrap your head around with merely adjusting to what is your "new norm." I personally have had to "bite my tongue" when I have met others who identify themselves as a "survivor " one thing that amazes me is the number of women who have gone decades as cancer free and then they are re-diagnosed.

I say stick to your guns. Show whatever level of support to your friends that you are able to do ... Even if it means not responding to an email. You have one obligation right now...and that is YOU. You need to remain healthy...not only physically but equally important...mentally!

Do not feel guilty for your response to your friends; God willing they never have to experience what you are going through.

Linda

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Hi Linda,

Thank you for your words of wisdom. I am sorry to hear you have been re-diagnosed. I hope your treatment works and that you do not suffer any harsh side effects.

I agree that it's important to focus on our own health and well-being. When I was first diagnosed it just felt that everyone wanted to help (which I can understand) but I could not handle the endless questions, and I did not want to give a blow-by-blow account of what I was going through. I was suffering, but it seemed that some people saw my situation as "gossip fodder" as I like to call it. So I quickly set boundaries and let some close friends know that unless I brought it up, I did not want to hear about my condition. I thought I would be able to handle it when my friends came to me, but I couldn't. It was too much for me.

I think that as women, we are conditioned from a young age to take care of other people, so that when we are dealing with something like this one of the first things we think about (after the obvious) is how are our family and friends going to cope with the diagnosis? I love my family and friends, but I also have a healthy, balanced sense of self-love too. So I do not feel guilty when I take time to relax. I just felt guilty at the time that I was not able to better handle my friends' situation.

Thanks again!

Sophie x

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Well said

Barb xx

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Thank you, Barb! I am trying to make sure I respond to everyone. I don't want to leave anyone out.

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But Soph you did handle it. Graciously, too, I might add

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Thank you! By the way, I love to be called Soph. My name is Sophie, but those closest to me call me Soph.

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Totally agree

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Dear Sophie, I'm sorry you went through that. It can be extremely hard. How I look at it when people ask those things is that it's a teaching moment. And one that could be used to allocate more than 7% of all money raised for breast cancer (that is how much of all the money raised goes to metastatic disease) to be used for metastatic breast cancer research. That is a US figure. The way I see it, the problem is this: all the media show the countless walks etc. to raise money for breast cancer (awareness). Then they interview the people there and they all smile and say how they've been cancer free for 25 years, that they're cured and how lucky they feel. They never, ever ask what stage they were diagnosed at. So, the public watches that and thinks that breast cancer is curable. They don't mention the stats for those of us with Stage IV, or for the need of funding for finding a cure for the disease as opposed to raising money to raise awareness -- which is where the remaining 93% of the money goes.

Unfortunately, it also gives the impression that the disease is curable which is why we get asked 1. When will treatment end? 2. You'll be okay, right? 3. Why do you look so good? etc.

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Hi Diamags,

Thank you for taking the time to respond. Those are some interesting statistics! Wow! You would think more money would be put towards finding a cure for metastatic cancer. I am so glad that October is over. I was getting really tired of "Pink October" and having it brought to my attention whenever I turned on the TV or went shopping. In the UK, there are coffee mornings held to raise money for cancer awareness, so I saw that everywhere I went too. It just seemed that I could not escape it. I couldn't even go to my doctor's surgery without seeing statistics of women who had ignored breast screening notices and not shown up for appointments. I know all of this is important and I am not downplaying that, but I just needed a breather from it all.

Take care,

Sophie x

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Yes, they love to raise awareness and keep it a secret that even with finding it early, 30% go metastatic. Because that's sad news and people don't want to hear that. I'll give you that 30-40 years ago there was an acute need to raise awareness and early screening and that has saved lives. But we have awareness now and it's time to put the money towards curing the disease.

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I agree with you! Whenever I see an advert for breast (or other types of) cancer, I only hear about women who have beaten it, or it seems that they have. We do not know what happens to them years down the road.

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That is so true

Barb xx

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The first time I was diagnosed with stage1 back in 2000, a friend asked if I was going to have a mastectomy and when I said yes she said OMG you are going to be deformed. Kathy always puts her foot in her mouth. I still laugh about it to this day. Maybe a little morbid but at least I didn't stick my foot in my mouth. People mean well but sometimes the wrong thing pops out. If it bothers you, you should say so. Hugs, Hannah

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Hi Hannah,

I must admit I laughed too, not because you had a mastectomy but because of what your friend said! I have a friend who is like that. She's the type of person who calls a spade a spade and says exactly what she is thinking (it has got her in trouble over the years!) as she doesn't really have a filter!

I agree that people mean well for the most part. I did tell my friend who called me that I felt uncomfortable with talking about her daughter's situation. She probably just thought that because I have breast cancer I would be the best person to speak to if her daughter also has the disease. It didn't dawn on her until I said something just how upsetting it was for me to have that conversation and rehash my own experiences, which are still very painful. She will find out more today.

Thanks for understanding. You ladies on this site are wonderful!

Sophie x

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Until I was diagnosed the first time, I thought all breast cancer was the same. I knew nothing about different kinds, stages, etc. I thought if it was caught early you lived and if it was caught late you died. Neither is true. I do know that most trials are done on stage 4 and if they are successful, they are given to early stages. Femara/letrozole was approved for stage 4 when I was first diagnosed and they did so well FDA approved it for everyone. Herceptin was approved for stage 4 hormone negative cancer and it did so well that it was approved for all negative breast cancers. So there is lots of hope for us. Sorry to ramble. I am just taking a break from cleaning up after Hurricane Michael. He pretty much destroyed our area. We we're so blessed. We have much less damage than most. Hugs, Hannah

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Hi Hannah,

I didn't know all that about the trials and drugs. Thanks so much for sharing your knowledge and insight into that! Looking back, I was probably the same as you, thinking that early stage meant a sure cure and late stage was certain death. Like you, I am very hopeful!

Sorry to hear that you have been affected by Hurricane Michael. I heard about the hurricane on the news. I hope your home was not destroyed during the devastation that was caused.

Take care,

Sophie x

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We really were blessed. We have to have a new roof but no leaks or trees through our roof and big mess in back yard which has been cleaned. We now have to get our backyard graded, a new fence and new landscaping. Very minor damage compared to most. Thanks for asking. Hannah

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Hi Hannah,

That's good that the damage was minor and can be easily fixed. All the best to you and your family!

Sophie ❤

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I can totally identify - and I do not think you were being selfish. So many people simply see this as another bad cold or some such and they all know dozens of people who were "cured". I feel pretty bad too because my sister had a lump removed and radiation and is now on Tamoxifen "just in case". We see the same oncologist usually together and I feel so bitter when I hear her markers are pretty normal and mine keep climbing. I hope that doesn't make me really mean! I, too, get fed up with the folks who make plans including me for up to a year ahead They can't understand that I actually have an oncology appointment or three between then and now and never know from one to the next what may happen - especially as currently I am not on any treatment (liver mets but asymptomatic other than what shows up on scans) but I know that at any time I may be facing the dreaded IV chemo. So often people just don't think - some friends even suggested I "go back to my relatives in UK" where I could be well cared for - REALLY?? I was only there for some years to study and rarely if ever had much to do with the current crop of relatives there now! I am an African born and bred (even if I am European) and could not live out of Africa I discovered.

I do find this site a boon for letting go of the frustration if I am feeling it. I know everyone else understands.

Keep the good feelings flowing.

Izzy

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Hi Izzy,

I can understand how you feel about your sister. You are not being mean. It's hard not to have those feelings, especially if your sister seems to be responding better to treatment. I hope that by going together to oncology appointments you can be of support to each other.

My husband has not been back to America (where he is from) to see relatives for over two years. He wants to plan for us both to go back together next September. I said maybe, but if I do go it will only be for a week or so, as I have to consider oncology appointments and treatments. I can't take off for a month to go travelling anymore. I have some trips coming up soon, but they are short trips across Europe.

That's an insensitive thing to say to come over here to the UK to be with relatives you do not know. It is up to you if you decide to do that, but if you are not particularly close to them I don't think it would be a good idea. I have faraway relatives too, but I prefer to stay closer to home. When I was first diagnosed, relatives I have not spoken to in many years wanted to fly over to see me, but I said no. What good would it do? I wasn't on my deathbed and I didn't need the extra stress.

Take care and I hope you enjoy the rest of your weekend!

Sophie x

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people just don't understand. they have no idea. just ignore them and move on... no one has any idea what this club is like. not even the oncs...it is just an awful thing to have happen...but remember - just because a mammogram is clear, or someone "beats" cancer...(which you don't beat cancer until you die from something else...) it doesn't mean that they have no roadblocks in their future path... don't spend time thinking about them!

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Hi Kit,

Thanks for your response. I agree that no one else gets this disease, unless they are also going through it themselves. I know my friends meant no harm. I think that a lot of the time people just do not think and so they come out with the wrong thing, or they are insensitive about our situation when they don't mean to be.

Take care,

Sophie x

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Hello Sophie, concerning the friend who sent you a note happily announcing her clearing of cancer when she knows your own situation, I feel that was very rude and insensitive. As far as I'm concerned, you do not need to answer her back until you feel like you actually can handle it. And if that is for a long time or never, so be it. She's not a very caring friend.

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Hello Danielle,

Thank you for your support! I don't think my friend meant to hurt me. She was just happy that her mammogram came back negative. I agree that it was insensitive of her to tell me. I wish people would share that type of news with other friends, not me! I emailed her back and wished her well. I had another friend tell me she wishes she could take the cancer for me! That's another extreme reaction. I want to tell people that they do not want to be in my skin. This is not something they would want to experience.

Take care,

Sophie x

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I know the feeling, but people do not think about your feelings, take care and God bless you

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Thanks so much for your support!

Sophie ❤

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Good morning: Sister/warrior We are all imperfect. People can be unknowingly insensitive or inconsiderate in so many of life's encounters. Know one, which includes loved ones get a manual on how to respond, or act when someone you love is diagnosed with cancer. Years ago I prayed this prayer" Lord please don't let cancer touch my sisters, or my mom". "If someone has to be taken home to heaven, let it be me." So every time a loved one tells me their mammograms are good, I see it as a celebration, and I am overjoyed. I would not wish this disease on anybody except the devil. I keep well versed, and read up on cancer research. If anybody wants any information, especially Homeopathic natural modalities I will spend as much time giving this necessary information, and yes more importantly emotional support. God bless you, and our sister/warriors still in this fight. XoXoXoXo Belated special thanks to all of the Veterans who fight actually for peace, and to keep our countries citizens safe, Yes this surely includes some of you sisters/warriors out there. Thank-you for your service XoXoXo

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Good afternoon RLN!

You're right! I try to put myself in other people's shoes when they say something insensitive or they try to empathise, but it doesn't quite come out right! I am sure I have probably said something in the past that was not the right choice of words at the time. Some people just don't know how to respond, but they do mean well.

Like you, I try to read up on this disease as much as I can and try to find alternative ways to help myself. I am planning to see a naturopath soon to see what she can suggest for me.

Take care,

Sophie x

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I don’t think your being selfish. I feel the same way. I think way to much already and rehashing everything brings it all back. Not everyone may feel like this but you have a right to your feelings.

I’m sure your happy your friend is healthy but we want to be healthy as well and it can be hard to hear. Try not to be so hard on yourself. 💕

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Thank you for your support! I appreciate it! x

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