<p>I think while they were worried and afraid before chemo started, it was at a manageable level. I reassured them and they were good with that. It was when they saw me having a hard time or not being able to do the things I normally did that it affected them more. My college kids didn’t see this and did better and I think that was okay. I didn’t hide things from them but I think it is easier to deal with when you arent living with it day by day.</p>
<p>My children are 29, 23 and 19 and were quite disturbed when I was told I probably had an aggressive, fast growing breast cancer. When they found out that was wrong, I could not believe their anger. They were really protective of me. Even with the better diagnosis they call more often and the one who is 19 and still lives at home is worried. When I was crying at first and apologizing for crying he said I didn’t have to apologize because it was ok. He’s my hugger and is always ready to help me. I had a scare when we lived in CA and my kids were 5 and 8 mo. at the time and I honestly don’t know how I would have handled it if it had come to pass. I am overwhelmed by the love in this group and I just wish I could hug every one of you and especially those of you facing treatment. I think of you and just want the best for you.</p>
<p>Regarding what to talk about with your kids:</p>
<p>We are dealing with a Dad who received a ‘slow terminal’ diagnosis over three years ago. It is a slow growing, incurable form of cancer and the parent was too old (over 80) at diagnosis for any experimental treatments. About the only thing they would usually do is remove it if discovered early enough. Since it was already all over the liver, that was not an option.</p>
<p>I find that we have not spoken a lot to him about details and fears, waiting for him to take the lead. Each sibling seems to have their own way of dealing with it- one jumps right to worst case every time there is a glitch, one doesn’t change anything, the other two are more middle of the road, more visits, but not a big cancer focus. Because the only treatment is palliative, there is not all that side of things to deal with, but there are still many emotional issues that could be discussed. Since it is an unusual cancer, I have done a lot of online research and he seems to enjoy the links i send him.</p>
<p>I think any of us would be more than happy to talk about anything with him, but are taking the lead from him. If I were in your spot, depending on the kid and the age, etc, I would probably indicate something like, " Hey, I don’t know how much you want to talk about this, but I am comfortable talking about it, so feel free to ask me questions about anything" or something like that so they are not keeping to themselves for fear of upsetting you (as if all the fears you have run through your head are not upsetting enough!!!)</p>
<p>Sometimes it seems to me that every one is having the same scary “what if” thoughts and fears in their down moments, but no one ever wants to voice them out loud for fear of suggesting something the others have not considered, but I think every one considers the most horrible possibilities they can imagine at times. And that is what is scary, the not knowing what is going to happen. I feel like it could be helpful to every one to just clear the air and talk it through. And yet I don’t really push for that with Dad!</p>
<p>My parents kept a lot from me, when I was growing, as a young adult, and even now. Protecting me? No. In my mind they have always excluded me. When my mom was diagnosed with breast cancer I wasn’t told for many weeks. I was angry that they kept that info from me - I was an adult with very young children of my own at the time. They kept many things from me as I was growing up. I knew something was up, but wasn’t privy to details. This makes for a very uneasy household. It makes a child feel excluded.</p>
<p>The information has to be age appropriate - I remember trying to explain it to a 7 year old AND a 13 year old. At the end of the conversation the 7 year old was totally confused and asked “What’s cancer?” BROKE MY HEART. That conversation was one of the hardest things I’ve ever done. It’s not much easier when your children are technically adults. The urge to protect is always there, but it’s better to share and include and allow them to be part of the healing process; and that’s allowing them at their own “pace”. Needing to put on a brave face for the kiddos is not necessarily a bad thing for the actor, either. Sucking it up for the sake of the kids has helped me get through more than a few iffy days.</p>
<p>Good thoughts to us all!</p>
<p>yes in an indirect way it makes one not crawl into the fetal position in a dark room, but engage in life and find alternative ways (BTW more healthy ) to cope. vulture 3 has given me great advice and I followed this weekend, getting out. moving forward, inch by inch as a result I actually feel better. that hole would have been a bad place to be for everyone concerned. I think the kid part for parents is so hard. What you want to live for but also so hurtful and twelling them stinks. I was wondering if my kids are a little calmer 1. they know Ihad it before and survived 2. they hear in the media of so many people surviviing it now. not sure. I guess one way the media can be good.</p>
<p>I just got the call that my biopsy done last Friday was benign. I think I chose not to post last week when I came across this thread because it was easier to keep a lid on my emotions. But, please know that, through your posts to each other, you all unknowingly supported me through a rough few days. It was so encouraging to read of the support and positive thoughts on this thread. What a lovely bunch of people!
Peace.</p>
<p>Congratulations, astromom - you can now breathe a sigh of relief!</p>
<p>I agree - this website has been a huge source of information and support on subjects far far beyond college and our children. Good luck to all of you (us) in the challenges ahead!</p>
<p>I have a question as well-- Sorry to go off topic, but would anyone be willing to PM if they know anything about cone biopsies?</p>
<p>Take care, all-</p>
<p>YES CONGRATS ASTRO MOM glad we could help women are really strong. Cone or Core? know core nothing about cone. Just asking I am notorious for the mistype</p>
<p>DTE - it’s a cone biopsy. Not breast-related… But yes, it’s hard to keep track of medical terms after a while!</p>
<p>break a leg yesshecan!</p>
<p>When I was diagnosed my kids were 14, 18 and 22. My son (the oldest) became angry and silent. My 18 year old became a “mother”. She had a blip in a semester at college which was very unlike her. And when a relative, who was living with us, refused to stay to help me out one morning she ran home from school (against my vehement wishes) to help. (It was a “bad” day). My youngest was in an avoidance mode. She was ashamed and afraid. (She lives and dies by her looks). When there was an incorrect diagnostic blip that would have meant that I had 3 months to live (raging bone cancer…radiologist read the mri wrong it wasn’t) my youngest said that she “would be more supportive this time.”</p>
<p>None of this is easy.</p>
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<p>My personal experience comes, not as a parent, but as a child who grew up in a home where breast cancer was a big secret – for ten years. No explanation for the obvious evidence of a radical mastectomy, aggressive treatments, etc. Of course, it was a different era in terms of being open with children. I can say that there were lasting effects for me from the secrecy and the feeling that I could not openly ask questions. While it may well have been the case that my parents were trying to protect me, I believe in my heart that on some level my mother was protecting herself – that if and when I knew, it would be the final thing that made it real. That may not have been the case, but it’s how I feel. It usually takes a lot of lies to hide the truth, both lies of commission and lies of omission. I think (and I am also a therapist and have seen this over and over again in my practice) that when truth is hidden, a lot is lost in terms of intimacy and trust. I think what I would have found most helpful would have been some basic age-appropriate facts and then the message, “You can ask whatever you want to, whenever you want to. If you don’t want to talk about it, that’s fine. If you do, that’s fine. But I will be honest with you. You won’t have to worry that there are things I am keeping from you.” I slowly learned over a period of years that everyone – and I mean everyone, including cousins my age – knew but me. It doesn’t feel good to think you’ve been an outsider in your own life and your own family.</p>
<p>PET scan clean this time around.
In September I get to drop daughter off for freshman year. Isn’t it a great day! Thanks for the shout out DTE.
All of you help with the fear by sharing here. Thanks.</p>
<p>yes so happy for yesshecan, keep training!!
I have a question- was away and got a message from an exfriend on my machine voicing concern and found out she called another friend asking details. I guess the news is “getting out” and I am horrified, people who never really talked to me are approaching me, I am pretty upset. when I had it before I was new to town and nobody knew unless I told them I really dont know how to handle this and on top of dealing everything else I am beyond upset.</p>
<p>dte, I can understand how difficult it is for you to deal with inquiries and comments from acquaintances – aargh! Would it work to come up with a rote response, such as, “Thank you so much for thinking of me. I can’t tell you how much I appreciate your concern. I’m sure you’ll understand that I’d rather not talk about the details. So how has your summer been?”?</p>
<p>I am a bit more circumspect today, I plan to do just that zipyourlips. and while for me this is very raw I understand for many it is really n ot high on their list so this will not be a big deal. That is human nature. The person who left the message, I have a very conflicted relationship and has hurt me a great deal in the past. I think it was genuine concern, but it just blew me away. It is hard to know how to respond. Like i said I did not have to deal with this in the past and I am rather reserved so I was shocked.</p>
<p>This seems like one of those situations where the-answering-machine-ate-my-messages approach might be useful. “Delete!”</p>
<p>I lost a friend because when I got cancer she was very “into” everything. She would call me and tell me things about breast cancer. Some things good and some things not so good. When I told her I didn’t want to discuss the cancer (my personal opinion) but just get through the day she became insistant. She was, what I call “a cancer groupie.” (Translation: Thank God it’s not me, but I know a lot about cancer so I’ll share.) After several months of calls/advice/prognosis my husband had her calls blocked. (I didn’t know that at the time.) I became much calmer. </p>
<p>No one has the right, outside of family and close friends, to know anything if you don’t want to share.</p>
<p>I learned to say to the people who genuinely cared, but with whom I didn’t want to become all the conversations are about me, survival and treatment, “I am doing well (or not so well) today…How are YOU?” I would ask about their kids and activities and the world outside. I didn’t want to deflect, but rather be part of the world and not the center of it.</p>
<p>right now I am just in my circle the wagons mode. I dont have the energy to deal with other people and what they think they have a “right” to know. I know it is not mean spirited and there really is no easy answer. I certainly dont feel like they need to know details and it amazes me how they ask details. One of the few things that you feel you can control is your personal info/privacy when everything seems so out of control.</p>
<p>Do what you need to do to get you through this. Don’t explain. Real friends understand and will help quietly.</p>