Early advice on who to share Dx with.

Eleanora23 · May 2016

I think there is a lot of wisdom here, unfortunately in my states of panic I didn't know a lot when diagnosed in late December and didn't have advice on how to handle things, so I took some misteps. Some of those include, for me, not being more closed about my DX. I wish I had kept it to myself.

I live in a rural area and I am very isolated with this DX and treatment. I tried to join a support group ASAP,but the one in the city closest to me said I was too early on in my DX to attend; the one near me starts during work hours and most of the ladies just hang out and chat with each other like a coffee Klatch; which is great for them, but not exactly what a newbie needs. I've learned even in support groups one needs to be careful if there are not rules, etc.. as I shared that I will need radiation after my lumpex, and one women who had an MX stated right after that that she had chosen her MX due to all the horror stores she had heard about Radiation. Great. Thank for sharing!. I'll keep going for the last half hour that I can get there I guess, as there is nothing else around for another 60 + miles. And I think most people have good intentions even if they dont' think before they speak. It is just disapointing though. And I have just gone through two surgeries and had hoped someone in the group would ask me about it..email, call? I don't what I am expecting of people.

I have learned that people run away from you, even in cyberspace, once you tell them of a cancer DX. I suppose the only ones that have made that truly heartbreaking is the family nearby. They are experiencing problems, but most anything that would require effort or me taking the attention for a period of time would be a "no go" So they are not only not involved, they have not asked as much as "how are you?" I wish I had not told them, but they would have found out. It is others, childhood friends, friends nearby (mostly acquaintances)

I work at home and have only shared with a few colleagues. I have become concerned that they might, indirectly be sharing it with the company. I think I just wanted supervisors that I trusted to know in case I needed to leave early, but the truth is nobody really wants to be bothered with this kind of stuff. I've told several colleagues only that I was getting some stuff done to prepare for "surgery" and none of them ever asked me about it anyway. Would have been better to stay quiet. They can't really give me permissions to leave for blocks of tiem anyway.

Thankfully there are a couple of friends, not close friends, who don't seem to be scared about this and with whom I talk to here and there, in a very calm, collected manner I would say. I want to be sure to have some folks to hang out with socially for fun and don't want to "spoil" that. There is nobody I can share with from the heart. At this point, I'll take the social hanging out, I need the fun. I am afriad that the few people in their small town / small area that now know about my DX will now avoid me and it is VERY hard to break into any groups here to make friends ( I work from home). I was about to move to a city and out of state back West when I got the DX and need to stay here due to insurance.

I'll post something funny in the diatribe / rant about this later. Going to find out now if I have clear margins, hoping it is so as I want to start treatent and be done with this surgeon. I'm sad cause I have no one to go with me, but hoping every week that I trudge through this I will realize that I can do it (often, not always) alone. It is not ideal to do it alone, but I guess I will.

artistatheart · May 2016

Eleanora, I wish I had kept it more to myself truthfully. I too live in a small community. Once I told a select group of people it spread like wildfire. Pretty much the whole town knows which is very uncomfortable for me. It seems like people have backed away. I have lost many "friends" who just do not want to deal with it. My best friend has not invited me over for coffee or shopping or anything since I told her. One of my sisters has not called me at all and another has called once and made an excuse to hang up after 3 minutes. I am no longer asked to many events. When I am I feel like it is a charity move or they are just trying to "get the scoop" so they can pass it on. Really if I could start over I would keep it to myself as long as possible. I am doing it alone in many respects. My husband is wonderful and tries to understand but gets a little impatient when I get upset. I have withdrawn quite a lot. Luckily I sill work full time so am able to get out in the world. There are a handful of people who I can sometimes talk with but otherwise I have built a very hard shell around myself.

Eleanora23 · May 2016

Hi Artist,

Thanks for acknowledging my post and sharing a bit of your story. These situations sound unfathomable / incomprehensible to someone that hasn't seen similar. I feel like I don't want to even post on this or other discussion boards anymore either. I've apparently never been good it. My posts often sit unacknowledged) and I feel the same rejection in cyberspace that I do out here in life. I gues that is because I feel so isolated anyway. I do appreciate the info I've gathered by reading, so I can keep doing that.

I guess I just suck at asking for help and what I am gonna do? I figure out quickly how to get stoic.

Thanks again, and sorry for the pain your are feeling. People who haven't had trauma don't often know at all how to respond to trauma, authentically and with their full presence. .

Ellie

Anonymous · May 2016

I have chosen to tell nobody. A few members of very close family know and that is it. My reason for this is that my health, whether it be a cold, virus, mental health issue, stress or even breast cancer is MY business and nobody else's. I also don't want to have to deal with the looks of pity and sadness about my 'situation'. I am planning on being well and healthy very soon again and don't need anyone dragging me down with their own misinformed attitudes and ideas about breast cancer.

JessieJake · May 2016

Wow, I'm happy to see others like me. I told only a handful of people. I think it really depends on the type of person you are - introvert/extrovert maybe. I watched a fellow small townie with BC use every communication method possible to build a very public and large support system. It worked for her; but I thought the whole time I could never be so open. I know it sounds like woe is me, but I always think nobody cares that much. I've learned, as it sounds some of you have, that most people want to hear your story for their own entertainment or simply to be in the know. They aren't going to offer you anything you actually need in the long run such as support, loyalty and selfless caring. I pick and chose each time if or who I will share something meaningful with. I don't care if it sounds selfish, but if the person isn't going to offer me anything; I'm not going to bear my soul. Hurt will only come of it.

So, it was hard during BMX and recovery to not have more around me, but since I had few expectations placed on anyone I didn't feel badly or upset either. Ok, except slightly when one of my confidant's promised dinner never materialized! She has her own issues, though, so I found forgiveness easy there. Oh, and then my own Mom! I swore her to secrecy but she thought that meant secrecy amongst me entire family!!! UGH!!! She's 90 so, again, I can't really be upset, but certainly disappointed.

Anyway, Eleanor, sorry your support groups are a little hokey. And unbelievable one would have stipulations on how far into BC you need to be to participate! And that other lady sounds like a one-upper! Guess those annoying personality traits don't disappear just because you get sick. It does make me kind of laugh because my mom (90, right?) shares stories about the ladies she lives with and it sounds just like high school! You'd think by then you'd get over all the silliness, but there still is drama - who sat in who's chair, a lady who can't hear feels snubbed because she didn't hear someone invite her to join them, or one who doesn't want to be contradicted when she says something, and on it goes.

So, I hope you find either more support or that your small circle (mine's small, too!) make you feel happier soon!

Racy · May 2016

Hi Eleanora and welcome.

I am a private person and told only one sibling and one friend (apart from my treatment team and hairdressers). It worked for me. I also live alone, did not work for 16 months after diagnosis and went through all treatments alone. You will realise how strong you are. You can do it!

Consider that the friends who have backed away may not be worth keeping. Also, as you seem to regret telling people, consider not telling anyone else.

Regarding support groups, this very site is the best you will find!

I also had psychological counselling and still take an antidepresent 5.5 years later. These measures may help you too.

Good luck and keep in touch.

Eleanora23 · May 2016

Thanks ladies, your sharing a bit of how you handled it helps me and I feel acknowledged . I have always been an open book, share just what I'm thinking kind of person. I am built like that. I thought if I talked about cancer like it was just, you know, something in life I had to deal with, that others would see it as less scary and would not back off. I guess the expectations (those are so killer!) that at least some people I had known for a long, long time, even if not as best friends, might be there for me. When I say "there" I just mean ask how I'm doing, etc. My actualy family here had financial issues, drug and alcohol and other things going on - so I know they will never be there and not even show any interest. Well I should have known so it would not ahve broken my heart so much. I'm about 80% better today about expectations than I was four months ago. Now when I start Chemom, and I am scared and alone, those expecations might hit me in the face again, who knows. One day at a day time from here on out. And taking very good care of myself too, every day, even when I don't "feel" like it. I might seek out another support group, I mmight nto. In any case I'm starting new Volunteer work soon, as much as the treatment allows me to, I will be out of my house, helping others. Folks I don't know. Cause sometimes strangers and acquaitances show the most concern for me, I can do that for thers. For folks that walked away and for that little gossipy town I am so glad to leave, the one where if you didn't go to garde school there you weren't welcome, that will be behind me very soon. Time to GET THE SHOW ON THE ROAD and just get on with the treatment and do it for myself! Best wishes Ladies !!.

Blinkie · June 2016

I also live in a rural area. This is my second go-round with DCIS and soon will have a third lumpectomy. If this happens again, I will have mastectomy.

When this happened 9 years ago, I lived in a city. I was careful who I spoke with and asked the three close friends who I confided in to tell no one. hahahahahaha. Funny me! Right away, a whole group of people knew about my situation. The person who did not keep my confidence said, "Well, I was sure you would want T____ to know." I didn't. I had tried to avoid being the subject of gossip and pity and having to hear inappropriate comments but did not avoid this at all.

This time I have again confided in three friends. (Not the same friends as before - I live in a different state now.) I would like them to reach out to me a bit more than they are doing, but if they can just keep my news to themselves I will be satisfied.

What is different is that I have the luxury of being able to stay home. This is not a hardship; I am introverted, I live in the countryside, and I am retired. I am not going to any of the regular social events that I usually attend. I'm not going to the grocery. I'm taking a little break from a volunteer commitment. I could do these things. But I am feeling unusually vulnerable, short-tempered, and impatient. I can barely listen to anyone talk about anything. I fear I will start crying in public. Plus, where I live, there are a lot of 'alternative' people, some who are my friends and neighbors, and I expect they will want to tell me why I got cancer or why there is a conspiracy to keep the cure for cancer secret or that I should have only eaten things grown underground, etc etc. Ack! Ugh!

Hiding out is better for me.

In this situation, I hate answering the usual casual greeting, "Hi, how are you?" Really, everyone just is using a social ritual and they don't want or need to know how I really am. So I say something true but irrelevant such as, "I'm loving this sunny weather!" or "I'm hungry, that's how I am." Then the conversation moves on and I feel glad to not have my biology and my choices in health care become the topic.

My husband is quite stressed out (I'm not the only person in the family who is having health problems) and when he is anxious he does really stupid things. He is a good person, and it is unfortunate that he does not handle things well in a crisis. He is good with practical aspects, but not with the emotional part. I am frustrated with him and feel grief that we are not more in sync with each other.

Surgery is next week.

Moderators · June 2016

Essieart-

Welcome, and thank you for sharing your perspective! Good luck on your surgery next week, and we hope this community can provide support and encouragement when you need it!

The Mods

Early advice on who to share Dx with.

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