Thank you for the welcome

[Barb7270]

Just wanted to thank you for welcoming into this group. I am very private with my disease to avoid worrying family and friends. Having a "club" that allows us to share our fears, worries and laughter is the best medicine. Thank you.

[nstonerocks]

I wish I had stayed more private at work. The kind of support your get here is special.

[Hidden]

Hi Barb,

You're welcome! You will find the right kind of support here.

I am also very private about the disease with family and friends. Once people know that you have metastatic breast cancer that's it. You can't take it back. Other than my husband, no one else outside of my medical team knows.

But I think one of the drawbacks to people not knowing is that you tend to hear about trivial issues people have or you might end up hearing about someone's mammogram experience (that was just routine and wasn't cancer). I remember a friend telling me how painful her mammogram was and how she got upset with the technician. I wanted to tell her that it's a small price to pay to get the all clear. Then another friend told me she has anxiety attacks when she has a mammogram (her mother had breast cancer, so she started having mammograms early). I hope I don't hear it again because I am going to say something next time. I'm not the right person to talk to about someone's routine mammogram experience.

Sophie ❤

[barbarac76 in reply to Hidden]

Hi Sophie,

I agree with everything you said. Once you tell someone, you can't take it back. That's how I feel with the two friends I told. I wish I could take it back. I agree, too, that it's so hard to hear friends complain about things that are so manageable like getting a mammogram. Wouldn't we all like to have that as our greatest worry. One of my friends who I told early on about my MBC tells me in great detail about every ailment and injury she has. I just don't understand that lack of sensitivity.

Barbara

[Hidden in reply to barbarac76]

Hi Barbara,

I also look at it as a hard thing to carry or to expect others to carry. I have seen friendships flourish and others cool down since my diagnosis. An acquaintance who thought that her breast cancer was returning seemed to want to spend more time with me and I tried to encourage her. But she got the all clear and she does not even talk to me anymore, as if she no longer feels the need to be around a cancer patient.

Your friend sounds insensitive. Perhaps she feels that as you have cancer you are the right person to confide in about her minor ailments. It might be worth letting her know how that makes you feel.

Sophie ❤

[Barbteeth in reply to barbarac76]

Hi

I have a friend like that..every little thing she gets wrong with her is a drama

She recently texted me about her cold and cough...went on and on then casually said ‘hope you ok’ and that was it!!.. insulting to me I think since I told her about my diagnosis from the start

Annoying..also her daughter who is the same age as one of mine is pregnant and she’s making a big deal of it...I might not get the chance to see any grandchildren..she’s selfish and I wish I hadn’t told her

Barb xx

[Hidden in reply to Barbteeth]

Hi Barb,

I would find it hard to maintain a friendship with someone like that, I really would. It sounds like your friend is very one-sided in her friendship and is not sensitive to your needs and is just using you as a sounding board to get things off her chest. What about how you feel and when you need someone to confide in? Does she offer you any support? She certainly doesn't sound as if she is encouraging and helping you to feel better about yourself. Sorry, but I find people like that to be takers rather than givers, and that can be draining.

Take care,

Sophie x

[nstonerocks in reply to Barbteeth]

What is with these people? Do they not get it? Are they in denial? Do they not consider whom they’re talking to?

[nstonerocks in reply to Hidden]

I also struggle with people whining about minor complaints. Even from people who know my story. I try to remember everything is relative, but it does smack of great insensitivity. If it continues, then you have to make a decision, is this another burden you want to take on? Is it worth it? I am amazed that people can be so insensitive and/or dull. Sometimes people do have to be reminded. One of my neighbors had early stage BC, and kept complaining about everything. I tried to be patient and compassionate. Finally I told her she was looking at a cure and I was going to die. She looked at me dumfounded. She is not an unintelligent woman How much Cancer talk do you think I can deal with? Some people act like I am a Cancer "expert" since I am living with it. I've had to ask people to change the topic or I'd have to excuse myself. In the end, you have to save yourself. Do what is best for your peace in as diplomatic a way as you can.

[Barb7270 in reply to nstonerocks]

Right on. I am convinced some do not know what is MBC!!

[Gwennie123 in reply to Barb7270]

I didn’t know what it was until I got it. Some people just don’t know what to say

[Hidden in reply to Gwennie123]

I was the same way, Gwen. But I feel that if people don't know what to say then they should hold back from saying anything that could cause us hurt or pain. Taking a few moments to think about what you are going to say can make all the difference. Once you say something, you can't just take it back or unsay it.

Sophie x

[Hidden in reply to nstonerocks]

I know what you mean! I am not an expert either. Perhaps you were viewed as an expert as you are a nurse so people are drawing on your medical background. I have to admit that I knew nothing about metastatic breast cancer before my diagnosis. I knew that there was early stage and late stage, but I didn't know that people with metastatic disease can live for decades with their condition. I have learned so much in the last 12 months!

Sophie x

[barbarac76]

Hi Barb.

I understand your need for privacy. I feel the same way. I told my husband, my three kids (it took me two years to get the courage to tell them), two friends, and three of my siblings. Looking back, I wish I had not told any friends. Their responses have been disappointing. Unless you're living with metastatic breast cancer, it's almost impossible to understand the emotional impact. Sophie is so right...when you tell someone, you can't take it back. That's why it is so comforting to have this group for support.

Barbara

[nstonerocks in reply to barbarac76]

I have been very saddened and disappointed by my sister's response. We are not very close, but we are in touch and I thought we'd be there for one another. She has distanced herself from me prior to my diagnosis, so I guess I shouldn't be too surprised. I rarely see her (we live about 2 hours apart), and she rarely asks how I am doing and doesn't accept invitations to visit or do things together. I spoke to her once about this, and she promised that we would get together. I don't recall anything I did that might trigger this kind of response. My mother was the same. Acted concerned at times, but told me I had a better life than hers, as if that makes it ok to go through this at my age. She was 95 when she passed, and always compared her life (which had its share of tragedy and loss), to ours in a resentful way. I have had to work to let go of resentment and disappointment. This disease has made me look at all of this and try to frame it in a way that is not constantly hurtful and wounding. I am lucky to have my husband and his family, which are closer to me than my own. I am lucky to have a few fantastic friends. Sorry to go on, but yes, I wish I had kept more to myself and really thought about whom to share this with.

[Hidden in reply to nstonerocks]

You would think your sister would be loving and supportive towards you, so I am shocked to read about your experience with your family. I remember how my extended family reacted when they heard of my diagnosis (not the whole story, just that I have breast cancer). My mum's sister wanted to jump straight on a plane and come over to the UK to see me. I politely declined. She did the same thing when my mum died. She came over, but didn't make it in time before she died. She was at the funeral though. She acted concerned, but she had not seen my mum in years and had not shown any interest in her at all until she learned she was dying and I suspect that's what triggered her reaction when she heard I have cancer too. But I wasn't about to let her come over as if I was on my deathbed and in need of her crocodile tears. I haven't heard a peep from her since and I don't expect to.

I'm glad to hear you have the support of your husband and in-laws. What a difference that must have made! I have been leaning a lot on my sister-in-law who was diagnosed with colon cancer right after my diagnosis. We have been each other's support this past year. She recently finished chemotherapy. When I called her the other day she said I am her hero. That really touched me! I don't feel particularly heroic. I'm just trying my best under the circumstances.

Take care,

Sophie x

[nstonerocks in reply to Hidden]

That’s what a hero is! Thanks for you thoughtful response. It has been a learning experience this lousy disease.

[Hidden in reply to nstonerocks]

Thank you! I agree that this disease has been a real learning experience.

Sophie ❤

[Barbteeth in reply to nstonerocks]

This is so sad about your sister..strange how people are..i don’t have a sister as she was killed in a road accident..i was only six yrs old and it still upsets me and I often wish she was here to support me..however from what you’ve said it isn’t guaranteed

We have to make the best of things

Barb xx

[nstonerocks in reply to Barbteeth]

There are absolutely no guarantees my son is an only child and has often complained about it. I pointed out my family and my Moms family as examples of sizable families that don’t stick together. You have to cultivate a close circle. Good friends. I envy families who have that special bond we assume all families have.

[Barb7270 in reply to barbarac76]

It is a "Barb" thing to keep quiet!! LOL

[Barbteeth in reply to Barb7270]

Ha so many ‘Barbs’ on here

Barb xx

[Southside25]

I didn't tell many people because of that look you get when you tell people, the sad "how are you doing?" inquiries...I just couldn't deal with it. Not to mention that people treat you differently because you're sick. No relationship is ever the same. I have no family; I told my 2 best friends because they deserve to know and two friends with whom I have regular social plans. That way I don't have to tap dance around why I can't make bridge today or have to cancel dinner plans for tonight because I feel like crap.

Also, I don't want people hugging me or telling me how they're praying for me. I'm not a believer and find offers of prayers kind of annoying.

[Barb7270 in reply to Southside25]

Hear ya!! Don'y want the "stare"

[nstonerocks in reply to Barb7270]

The "death" stare.

[nstonerocks in reply to Southside25]

How about getting 2 "prayer shawls," that were given to people by friends at church before they passed from Cancer? Now I'm sure the people who sent me these thought they were sending me a blessing, but I also don't have a faith and thought it was kind of morbid. One didn't smell too good. I hung on to them until one day I decided they had to go. They sat there in my closet like harbingers of doom. I honor the women they comforted, but they were freaking me out. As for prayers, I welcome any and all. Sometimes it's all a person can offer, and it will make them feel better. And I do think there is a kind of cosmic energy generated by positive thoughts, prayers, good intentions.

[Southside25 in reply to nstonerocks]

I didn't mean to sound ungrateful for prayers offered for me. I don't believe in prayer, but others do and it makes them feel helpful. It's like when someone says "have a blessed day", I just say thank you. They are offering good thoughts to me, and and I appreciate that kindness.

[nstonerocks in reply to Southside25]

Totally get it, no worries. It is often awkward and difficult when people with strong faith have the expectation that I find the same strength and comfort in religious beliefs that they do. I wish I did have that level of faith, but I honestly don't.

[Barbteeth in reply to nstonerocks]

Me neither

Although I was brought up Roman Catholic and educated at a convent school..when I went to university and was free to do what I wanted..I chose to do my own thing and be kind to people and do my best..no need to be going on about religion all the time

Each to their own..hope I haven’t offended anyone..didn’t mean to

Barb XX

[nstonerocks in reply to Barbteeth]

Also raised Catholic. Catholic schools thru high school. A big public university was a culture shock for me. Try to abide by the 10 commandments. The Buddhist perspective encourages being generally compassionate and nonjudgmental. I’m a work in progress.

[Barbteeth in reply to nstonerocks]

Well said

Barb xx

[Onie54 in reply to Southside25]

Totally agree with you there! I find that many of those who want to hug you are doing it for themselves (to make them feel better), not really for you. They ask ‘how are you doing?’ in that way that makes you feel like you’re dying in front of them! I haven’t asked for their sympathy and it annoys me.

Unfortunately I end up avoiding them at work or not socializing with these friends outside of work. My immediate co-workers are great, I feel like a regular person around them but with the knowledge that they are there if I don’t feel well and can’t keep up with the work.

You want to surround yourself with family and friends who still treat you like ‘you’, understand if and when you need to talk about ‘it’ and still include you in the land of the ‘living’. I’m lucky that my husband, my kids and most of my brothers & sisters understand this.

[Rotagirl]

Hi Barb, I fully understand your wish to be private about this horrible disease. I, on the other hand, seem to have told a good many....family, friends. I find that so many do not understand metastasised disease and think you will soon be cured. I take great pains to 'educate' them and explain it all. Perhaps this is partly because I was a teacher and I am 78 with friends going through big health issues or just 'going'. This is a great site and I wish you every success with your treatments. Best wishes, Fay

[Barb7270 in reply to Rotagirl]

Thank you! In this to win it!

[mariootsi]

It is the best medicine! So happy you found this site! We discuss anything and everything and there are such knowledgeable, supportive and encouraging women here! Love, Marianne

[Barb7270 in reply to mariootsi]

Thank you...our club.

[SusieIM]

I hear you about being private about the condition we have. At least here you can freely chat about what you want to talk about, knowing we really know what you are going thru ♥

[nstonerocks]

Yes, those two shawls are in the landfill. No disrespect, but they served their best purpose, and they were draining my positive energy.

[Barbteeth in reply to nstonerocks]

Omg that’s the weirdest thing I’ve heard of..bizarre behaviour..probably meant well?

Barb xx

[nstonerocks in reply to Barbteeth]

Yes, well intentioned no doubt. I hope they don’t ask about them😱

[Hidden]

Wow! That’s a new one. You made the right decision.

[Red71]

I am much more like Marianne. I have told everybody in “installments “. The first was family, then close friends, then acquaintances. I told family on the phone. They are all supportive in their own way and I don’t expect them to act differently, ie be more connected than they were in the first place. I told friends next, sending out an email. I told them what was wrong and that they were welcome to call and come visit but I didn’t want them to come and cry, that consoling them was not my job! Extraneous friends and acquaintances were the last I told, mostly when they commented on my weight loss and how good I looked! I was not offended and look at my job as an education coordinator. I didn’t understand what MBC meant and neither did my friends. I continue to do as much as I did previously. My friends make allowances for my decreased energy levels but don’t baby me and don’t exclude me either. I rejoice when they get back negative mammograms. Why would I want them to go through this? If anything I feel closer to my friends than I was before. When I was confined to a chair they brought food and company. We talked for hours, about all sorts of things. I have an small but amazing set of friends, a great husband. I do have a few energy sucking people in my life but I am able to keep them at arms length. We are all different but I would feel very strange keeping this from people in my life that I see regularly. I go to my local coffee shop every morning. The regulars all know and they also know that I am available if they have questions. I really don’t mind because I have found that if I’m positive about being around for the next 20 years people begin to go back to treating me like they did before. For me it’s much easier than trying to hide it and it would be obvious to most that something is different. I’d rather have them know than guess. Time to end this before healthunlocked tells me I’ve run out of space! Elaine