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What to tell loved ones about our condition

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I had a major revelation this week related to what I do and do not discuss with my family about my situation. The background: Fifteen years ago, we learned through surgery that my mom's colon cancer had recurred and was so extensive that the surgeon had not even tried to remove it all. She was still groggy and in recovery when he talked to her; it turned out that she either did not understand or did not remember what he said about her prognosis. For the next two months, my family was not sure whether my mother was being incredibly strong or whether she did not really understand that she was probably beyond treatment--and none of us brought it up with her until finally my dad arranged an appointment with her oncologist. (Clearly, her oncologist was not doing her job, but that's another subject.) My mother fainted in the doctor's office when she was told the facts of her situation, and passed away a few months later.

Fast forward to now, when I see the same family members almost every day and discuss my treatment and side effects with them. They have been incredibly supportive. Still, I have not told them the details of what I know about my prognosis--that there is real reason to hope, but the odds of being alive and cancer-free five years from now are not in my favor. I want to spare them the pain of knowing these things.

The realization I had this week is that they probably have questions they would like to ask, and I haven't given them the opportunity to do that. Looking back, it's incredible to me that we're behaving this way after what we went through with my mom! So now I feel that I should say to them, "I've been wondering if you have questions you'd like to ask me or things you would like to talk about, and you deserve a chance to do that." But that is a HUGE conversation, and not one you want to start in the middle of a pleasant family dinner.

If anyone has thoughts about having this kind of conversation, I'd be interested in hearing them.

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

My husband knows the seriousness of my cancer but refuses to talk about it except to say I'm going to be fine.  Other than that, I've sugarcoated to our children and grandchildren.  I just don't see the need to worry them.  Would they be nicer to me or spend more time with me??  They have their own lives and I love them all so much, I don't want my reality to cast a black cloud over it.  My funeral had been planned for years, my life insurance is paid up, my will is written.  I've left written instructions for my husband about where everything is.  What more is there?  I could be killed tomorrow....my 37 year old brother dropped dead from a massive heart attack one hour after an MRI.  I know some people don't agree with me but I prefer to focus on living, not dying.

Love, 

Eldri

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I can also see things from that point of view, Eldri. In fact, I don't feel like I need them to know the details for my sake--I seem to be able to take things one day at a time most of the time. I guess what I was trying to say is that it suddenly occurred to me that they might need to talk about the details but feel like they shouldn't ask because they want to be positive for my sake. On the other hand, I may find out that they don't in fact want to talk about anything negative.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I've committed to be completely honest with my 24 year old son about my condition. My husband knows the odds but remains hopeful. My mother, on the other hand, doesn't want to hear any of it. She actually made an excuse to get off the phone when I was trying to discuss it with her ( she lives far away). Granted, she has other problems (narcissistic personality), etc. but I deal with her. If people ask, I tend to tell them the truth, but we don't know all the answers and there's always hope until the very end. I make a big effort to "look" well so many think I am well. This really sucks, doesn't it. And no matter how much time we've got left, this will never go away. It takes incredible strength to put one foot ahead another every day and not crumple in to an emotional heap, but we all are doing just that!  Bravo!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

becca, we have wrestled with this question before so I really had to stop and think before I responded.  

I think we all need to do what WE are comfortable with because it is "ours".  You say you have told them so I guess if they really want to know more they can ask.  My mother knows about the endomentrial cancer but does not know about the UPSC.  At her age, she is 90 now, when I found out we had just buried my father so how could I tell her about UPSC?  "Cancer" was simply enough.   She did ask me questions and I always answered her truthfully.

Everyone has something going on in their life so some people may have the time in their life to know more and be there for you, other people may have troubles of their own and can't be there for everything - and both are ok.  Some people may not want to know more as to protect themselves from the pain and fear - again, this is ok too.   

I had 'older' parents before it was in style.  We talked about death and/or dying all the time, but when it comes - it is a very different thing.  I can't begin to imagine what my mother and sisters were thinking when they heard I had cancer.  I wouldn't wish cancer on my worst enemy and I hope I am the one to "have it" for all my family.  

It does sound like you have left an open door for them, all you need to do is let them know you would be happy to answer any question they have.  In the end, you are a statistic of one so no matter what the numbers say - it doesn't say it all.

I still work and so I appreciate the woman who had gone through breast cancer lend me her ear when I found out, as another woman I work with had lent her ear to her.  I have had several people come and ask me questions about their cancer, cancer scares, or fear of what is coming.  Last week someone came in and sat down to ask me about chemo.  We talked about him and he talked about his concerns.  He had a biopsy Friday and I hope to see him next week.  He has almost accepted that he will have cancer.    

Just my two cents

brissance's picture
brissance
Posts: 192
Joined: May 2016

What YOU feel comfortable with should be your guide.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

As many have stated before, this is a very personal diagnosis. I don't think anyone truly understands what it is like to be in this position, until they actually are. We are all different in personalities, eating choices, health, religious affiliation, likes and dislikes - BUT we all have this one thing in common. In the same way, we will all have different views on what is best for our families, friends, treatment, etc. Yet, I love that we all love, support, and respect each person's decisions and their different ways of dealing with it.

I have a tendency to be straight-forth and open. However, I have found this also opens up for others to be the same way in return. This can be a really challenging place to be, while in this situation. When having this type of approach, you sincerely want to be considerate of others, but you also need to be strong and take a stand for what you desire. A lot of emotions get in the way of reality. For some, it becomes all about them and what they want/need and not about what you want. It is kind of an interesting place to be - one that I have never been before. I try to start with light conversation to test where they're at emotionally and to see if they can handle the information I have to share. Some, I share a lot, some I share little with.

I think you need to listen to your heart and follow it. And, it's a possibly your approach will be different for each occasion and family member or friend. I elected to share my diagnosis with some and not others. As much as cancer is a physical ailment, it can be rather mental when dealing with the other aspects that it brings forth.

Blessings of peace whichever route you choose.

janaes
Posts: 800
Joined: May 2016

Charissa, i think i do the same as you.  At least with my mom and dad esspecially. I have been really pretty open with them.  And yes they are very open in return.  My mom and i get into some very hard conversations that we never have had before cancer.  Didnt even have these hard conversatthan  with my cancer twenty years ago.  I didnt share my negative emotionsions nears as much.  You really shed some light for me with what you wrote. Thank you.  It really helped me think about why its so different this time for me.  Having cancer twice brought with it a ton of emotions.  I wasnt shy about sharing them and im sure it encourages others to do the same.  That is what i am finding too. 

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