<p>Mimk6 I am thinking about what you wrote. it is so hard to know what to say. I remember my mom having a SIDS baby before me, and the effect it had on my whole family. esp me the one to come after. My mom’s depression pervaded the family. So it was there and really never talked about much. But back then they told you to have another baby and move on. Now things are so different. I guess we learn from experience, what works what doesnt. It seems like your mom didnt know how to handle it. But as a therapist I know you know how things have changed. I have told my kids to ask me anything they want to. Its just a different world now, I am sorry you felt that way.</p>
<p>I did a Caring bridge site and started out by saying I will post everything about my cancer here read it and when you call me or see me talk about something other than cancer. My life had too much in it to remind me constantly of cancer and fear and ickiness.
It worked really well. I shared alot of things it might have been too hard to say in person and almost everyone abided by my wishes.
I had one friend who would call and ask how chemo went or a procedure etc. After two calls like that I said you need to go to my website because it is too hard for me to talk to everyone about this but I still want your friendship.
She got it after that.</p>
<p>What is a Caring Bridge site?</p>
<p>Caring Bridge is great. It’s a website where you create an account and a person or their family can post updates regarding what’s going on with a health crisis. There’s a place for photos and also a guestbook where guests can sign in and write comments. A few years a go, someone I know had a devastating health crisis with even more devastating complications that almost killed him, and left him permanently disabled. The site gave his wife and close friends a place to update family, friends, and his wider circle of acquaintances. It also became a place where friends could post announcements about fundraisers, etc. It saved her the heartache of telling their story over and over and over again and it ensured that everyone was getting correct information and not hearsay. Over time, it became therapeutic for her to chronicle their journey and adjustment to a new life. She has said that she has gone back and reread entries and comments and that it’s helpful to see, in writing, where they have been and where they are now. I imagine the site can be whatever you want it to be in terms of what you share or what you want out of it.</p>
<p>DTE, thank you. My husband’s parents also lost a baby to SIDS – their firstborn, he was the second child. They also said very little about it. </p>
<p>Not only did parents keep information from their kids, but back in the day, doctors and family members would actually keep information from the patient – not telling her (or him) vital information about her/his health lest they be upset. That’s hard to fathom now, but it happened.</p>
<p>I think Care pages is the same thing.
things have changed alot in the medical area and the way things are handled I think its better.</p>
<p>I have a friend in CA who told me about Caring Bridges. It sounds like a wonderful site. So far people have respected my right to tell the people I choose when I choose except in one instance. I’m thankful for that because I get tired of going over the same thing endlessly. I have to have a day when cancer is not discussed. My lumpectomy is scheduled for Friday morning. I will be glad to get this part over. I’ve been so busy I haven’t been to the site for awhile. Surgery certainly involves a lot of appts. I’ve chosen to have balloon brachytherapy for radiation. I had heard of brachytherapy but not this type. She inserts a small balloon and a tiny catheter during surgery and the Monday after surgery I start going twice a day to have radioactive seeds placed in the balloon for aprox. 20". This continues for a total of five days and then I’m done with radiation. It’s called Mammosite and I wasn’t sure until I spoke with two women who had this and did some other research. For my particular case it sounds just right. I really hope that’s all I’ll need but won’t know for awhile. More waiting! I had to discontinue my Celebrex for osteoarthritis prior to surgery and all my joints are so unhappy with me. They all hurt and I’m exhausted. They may not need anesthesia.</p>
<p>My husband had non-Hodgkin’s lymphoma ten years ago (this month). At the time, sites like Caring Bridge didn’t exist; it would have been very helpful. While everyone has different right answers, my husband has found that total openness about his cancer and his treatments (two rounds of chemo) have been beneficial to many, many people. In fact, I mentioned it to a neighbor I was talking to a few weeks ago, and it turned out her husband was having the same treatment my husband had had–but he didn’t know anyone who was doing well with it. They came over that evening, and I swear I saw her husband go from gray to pink while he was talking to my husband.</p>
<p>I was somewhat more circumspect about my own cancer at the time, however. I couldn’t stand the idea of people pitying me. As it turned out, though, I was able to control their reactions–“oh for god’s sake, don’t get like that, it annoys me”–and it resulted in several friends having various conditions checked. (My knee pain turned out not to be arthritis, as I’d assumed–it was a chondrosarcoma, an astonishingly rare (800 cases/year in the US) adult bone cancer.) People were very supportive.</p>
<p>I definately think it is you that needs to set the tone, and others will follow. it is hard though to always have it in your face and I feel the most comfortable being with my family where it is not talked about all the time. I also hate the pity more than most anything. (except the cancer) and this is a common thing I hear from most people. I think most people care and are supportive its just in general a difficult time for all concerned.</p>
<p>…so my daughter just left the house with brownies for a friend and family. The friend’s mother or father (I am not sure which) has just been diagnosed. I suspect I know, but since the friend wants to keep everything private I respect that completely. I am proud of my daughter for her bringing the brownies over. I volunteer to make dinner for my daughter to bring over when they need/or are ready to accept dinner/lunch/errands/whatever.</p>
<p>I am sad tonight.</p>
<p>sorry ellebud. Its hard because you understand completely and it also brings back memories I suspect. Hugs</p>
<p>hi all, I’ve been reading thru your posts and am so touched by the genuine humanity and wisdom here. dte–thanks for your kindness on the other thread.</p>
<p>my 18 yr old d has to have a needle biopsy done tomorrow morning, she went for a regular gynecological exam on monday and the doc noticed lumps in her breast–so she had an ultrasound yesterday and well, when the radiologist came out to talk with us I swallowed hard. </p>
<p>I had told my d that the ultrasound was needed to “rule out” what the doctor was concerned about and here she was hearing the radiologist tell her she found “masses” in her breasts. it was only after she described the biopsy procedure that she acknowledged that the “masses” were most likely benign, given her young age etc. My heart went out to my daughter who was trying to be so mature. Last night was tough, as she grappled with her fears and questions. She researched a bit on the internet, as did I and then let it go…we baked brownies, and hung out, snuggling with our lovable golden. </p>
<p>well I am happy she’s out tonight with her friends, she left smiling and open…I was proud to see her stick to her plans to go out, (she is scheduled to leave for college on Saturday) and has to wait til the middle of next week to get her results. But I think its best she goes ahead to school–its an orientation week filled with socializing and fun activities she should not have to miss. earlier this eve I spoke to my gf of many years and found myself saying I hope the doc will release results to me so in the event of difficult news I can drive to my daughter…wouldn’t want her to receive news by phone by herself. I think I will ask if my d can sign a release for this. also wondering if they will permit me to be by her side tomorrow during the biopsy. my friend told me she had done this w her sister in law. </p>
<p>I have not been down this road myself, although I have a health condition (heart defects/have pacemaker last few yrs) and I know how awkward it is when others feel sorry for you rather than simply try to be with you, where you are. and let you, be yourself, not an illness…</p>
<p>lindz, what a frightening time for you. I am so sorry that you and your daughter are going through this, particularly at this young age and on the brink of going off to college. As you know, the odds are overwhelmingly in favor of a benign result. Asking to accompany your D during the procedure is a very reasonable request. I hope they readily agree. Your D should be able to sign a waiver to grant you access to her test results. This would be most easily done while you’re there at the office. You might want to write yourself a note with this and any other tasks/questions, as it’s easy to get distracted and forget to take care of such details. Good luck to your daughter, and to you. I hope she can enjoy her orientation, meet many new friends, and breathe a sigh of relief when she receives some welcome good news mid-week. By the way, should the results be delayed, don’t assume that means bad news. My personal experience has shown no correlation between delays in results and bad/good news. This seems to be a time of summer when many people – including medical folks – are on vacation, and delays can happen due to communication and other glitches. Take care.</p>
<p>Lindz-- sending best wishes and good luck to you and DD. I wish I could send a potion for peace and calmness to you and D.</p>
<p>Sixties- I hope all went well with your procedure this week, I had the Mammosite radiation a year ago, and am sure that it was the right thing to do (rather than the extensive, conventional radiation). Try to rest as much as you can, I was worn out for about a month after finishing the radiation.</p>
<p>Also, best wishes to the rest of you, I don’t mean to leave anyone out, but need to go to bed.</p>
<p>thanks karen and zip—they did not permit me to be w my daughter, once I realized they weren’t budging, I reassured my d she was in good hands and would be okay…which she was. I asked the nurse after the biopsy was done about them releasing results to me, since Zoe would be at second day at college --they said they would but needed her gynecologist to agree to this. so I placed a call to her doc to see if I can clear that path now before next week. zip–didn’t see your post til now…you were right I did forget to ask them about a waiver and they didn’t offer. weird time since my daughter turned 18 two weeks ago so it is brand new dealing with that issue, within this one. maintaining a hopeful attitude…</p>
<p>hope today is a good day for others…hugs all around</p>
<p>Glad to hear the procedure went smoothly, lindz. I’ll be keeping you and your D in my thoughts. Take care.</p>
<p>Lindz, how wonderful that your daughter has you to go through this with. It will mean all the world to her.</p>
<p>When I was close to her age I went through something similar but did not feel comfortable sharing with my mom. I remember how huge it seemed at that age to face the possibility of something so serious and now I can’t even imagine how I went through that alone.</p>
<p>It will be on her mind, but nice that she will have the distraction of college activities to keep her busy and not dwell on it constantly. </p>
<p>My most sincere thoughts and prayers with you and your daughter. The days will be long for you indeed {{{hugs}}}</p>
<p>thanks momlove—sad to think you had to deal with something like this alone. sorry to hear that. my d has been out all day since the biopsy and has a party this evening…leaving in the morning for college. I’m grateful she is so resilient and able to focus elsewhere. </p>
<p>zipyourlip–appreciate your thoughtfulness. hope all here have a peaceful weekend…</p>
<p>Lindz, hope all the news you get is positive . You both will be in my thoughts.
Take care, and enjoy her beginning the new adventure of college. She sounds like a stong, positive kid.</p>
<p>Sending love and good health to both of you.</p>