How comfortable are you talking about your illness?

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lp1964
lp1964 Member Posts: 1,239 Member
edited October 2015 in Colorectal Cancer #1

When I was diagnosed I needed some time to tell my loved ones the situation. As I'm going through the mental and physical healing process I find it easier and easier to talk about my illness at work or with strangers. To me it's a fine line between showing people that even when you have or had cancer you could be well and live an extraordinary life, but not to bring it up too early, often or as an excuse to acheeve something. At the same time I'm not shy telling people who give me trouble (including family) that I had cancer and need no stress to bring it back. 

What are the situations and reasons you feel comfortable talking about your illness?

Laz

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  • NewHere
    NewHere Member Posts: 1,427 Member
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    I Have Kept It Very Low Key

    Have told a very limited number of people.  Not quite sure why, though I usually keep stuff to myself.  Immediate family, a couple of friends (a couple who had cancer, so it is easy to talk about) and a new friend who I figured out went through it.

    A couple of people sometimes ignore it a bit in terms of the stress issue.  Not as me using it as an excuse, but more wishing they would cut some slack on things that are not that important, "Really necessary to drop that in my lap as having to take care of when it is really kind of B.S." type of thing.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    NewHere said:

    I Have Kept It Very Low Key

    Have told a very limited number of people.  Not quite sure why, though I usually keep stuff to myself.  Immediate family, a couple of friends (a couple who had cancer, so it is easy to talk about) and a new friend who I figured out went through it.

    A couple of people sometimes ignore it a bit in terms of the stress issue.  Not as me using it as an excuse, but more wishing they would cut some slack on things that are not that important, "Really necessary to drop that in my lap as having to take care of when it is really kind of B.S." type of thing.

    Interesting question. before

    Interesting question. before I was diagnosed I had a friend who had survived breast cancer. She'd tell everyone as soon as she met them. I found it a turn off. It seemed to be an attention grab and everyone she met would be all "oh wow, you're amazing" and all that. She also brought it up on a regular basis and used it as an excuse for everything. Can't remember something? Chemo brain. Riding your horse leaning to one side? It's because of the mastectomy. It got old very fast.

    I try not to tell anyone unless they need to know. I don't want to look like I'm trying to get them to tell me I'm a hero or something. And I don't want them to feel sorry for me or feel like they have to be careful what they say around me. On the other hand, I've become very used to talking about procedures and things that have to do with it despite the fact that it's a cancer in an area that's a bit embarassing. Mainly because if I have to talk to anyone about it I beg them to get a colonoscopy. If I embarass myself and it saves someone's life it's well worth it. 

  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Very Comfortable With Strangers

    Not quite as comfortable as I'd like to be with family members for "fear" of having them worry. I've actually be able to parlay talking about it into getting money for phone or video interviews. I donate all of the money ($275 so far) to help a friend out who is going through some very tough times.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Hi Laz

    I kept my diagnosis from everyone until a week before surgery.  I needed the time to do my research and determine what I wanted to do.  I also knew there as nothing for family to do other than worry and fret which would not have helped me or them.

    I have no problem ansering medical questions from family or friends or anyone here.  I don't bring it up, but if they do I answer in a straight forward manner.

    The one thing I don't discuss with family are the emotional issues which come with the diagnosis.  I found the time spent helping my sister with her stage 4 uterine cancer treatment to be both difficult and emotionally taxing, but also in some ways "rewarding".  I was able to use my own experiences and ability to investigate to help her, even though it did not save her.  It also helped our parents who would have been at a loss to know how to proceed.

    Marie who loves kitties

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    It's funny Laz. I have always

    It's funny Laz. I have always been very open about my disease. But in just the last 6 months I have been less open about my disease or anything for that matter.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
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    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Trubrit said:

    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

    *Like* Oh shoot. We can't do

    *Like* Oh shoot. We can't do that on here.

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Trubrit said:

    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

    This

    . I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. 

    ^ Is the time I have spoken up.  As JJ63 said, where is the like button.

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    If asked, I answer direct

    If asked, I answer direct questions. If someone mentions their travails, I may share mine, it seems the sharing makes one less alone, as this blog does. I casually mention things to my family so they know what's going on, without wondering if a scan was good or bad, and then having to ask. I'm grateful that my original diagnosis at 49 prompted my younger sister to get checked at 47, and they took out two polyps. My dad's stage 2 diagnosis at age 80 and the little bit of bleeding are what prompted me to get checked. We now all know it runs in the family, so sharing information, in my case, is very important, and a good warning to others to get checked........Dave

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    Trubrit said:

    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

    You said...

    ...everything I wanted to say Sue!

    Thanks, 

    Laz

  • danker
    danker Member Posts: 1,276 Member
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    If asked, I answer direct

    If asked, I answer direct questions. If someone mentions their travails, I may share mine, it seems the sharing makes one less alone, as this blog does. I casually mention things to my family so they know what's going on, without wondering if a scan was good or bad, and then having to ask. I'm grateful that my original diagnosis at 49 prompted my younger sister to get checked at 47, and they took out two polyps. My dad's stage 2 diagnosis at age 80 and the little bit of bleeding are what prompted me to get checked. We now all know it runs in the family, so sharing information, in my case, is very important, and a good warning to others to get checked........Dave

    sharing

    I had a chemo pump for 5 weeks, while I was getting radiation.  Thus it was impossible to hide the cancer.  So when asked, just answered with the truth.  It does set you free! No need to remember what you told to whom. 

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    My whole office knows, not by

    My whole office knows, not by choice, one person told SO many people that I stopped keeping it secret (my office has 2000 people).  I did stop sayign I had rectal cancer, I can't tell you how many people don't know what a rectum is.  Now I just say colon cancer.  It made people uncomfortable.  I don't know who knows and who doesn't so I'm just open about it.  My family knows.  My friends know.  I do not post about it on Facebook.  I don't share it with people from high school or my past (even if I was once close to them) who I run into unless they say "I had cancer" to which I will say "me too" and show support and we talk about it.  I'm very open on the boards.  At the hospital, so many people have seen me naked that I could comfortably walk down the hall naked in front of workers and not care at all.  lol  I think I've reached the 100 mark with nurses, doctors, surgical staff, etc.  I'm very comfortable for medical staff to see my ostomy but at home, I'm not comfortable when people see it. My kids it's fine, my sisters it's fine, that's it. I'm even sorry my cousins know about it.  It's really not necessary. Recently my neighbor noticed it as my shirt untucked and that has me upset.  I really didn't want anyone to know unless they had to.  I managed to hide it for two years while gardening so I wanted to kick myself that I was so careless and she saw it when I was taking out the garbage.  And she made a face full of surprise so I'm sure she saw it.  

  • Cazz
    Cazz Member Posts: 106
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    Helen321 said:

    My whole office knows, not by

    My whole office knows, not by choice, one person told SO many people that I stopped keeping it secret (my office has 2000 people).  I did stop sayign I had rectal cancer, I can't tell you how many people don't know what a rectum is.  Now I just say colon cancer.  It made people uncomfortable.  I don't know who knows and who doesn't so I'm just open about it.  My family knows.  My friends know.  I do not post about it on Facebook.  I don't share it with people from high school or my past (even if I was once close to them) who I run into unless they say "I had cancer" to which I will say "me too" and show support and we talk about it.  I'm very open on the boards.  At the hospital, so many people have seen me naked that I could comfortably walk down the hall naked in front of workers and not care at all.  lol  I think I've reached the 100 mark with nurses, doctors, surgical staff, etc.  I'm very comfortable for medical staff to see my ostomy but at home, I'm not comfortable when people see it. My kids it's fine, my sisters it's fine, that's it. I'm even sorry my cousins know about it.  It's really not necessary. Recently my neighbor noticed it as my shirt untucked and that has me upset.  I really didn't want anyone to know unless they had to.  I managed to hide it for two years while gardening so I wanted to kick myself that I was so careless and she saw it when I was taking out the garbage.  And she made a face full of surprise so I'm sure she saw it.  

    Not really

    At first I only told my husband.  Then I realized that the longer I kept it from my mother the madder she would be and of course she told my brothers - all mercifully in the UK and my best friend in another city.  For about a year I told  nobody else, which was relatively easy as we had just moved 1200 miles and didn't know anybody anyway.  After about a year, I realized that I had gradually lost touch with just about all my old friends because all I could think or talk about was the last treatment, the next scan, etc. and I didn't want to talk to them about that, so I became quite reclusive and, yes, pretty darn boring!  So then I did let on to a few more friends, especially ones whose lives have been touched by this evil disease - with some interesting results.  One woman I have known for 30 years lost her husband to colo-rectal cancer only two years before and she said "oh, bummer, well we've all got to go sometime, did I tell you that I'm putting that Leaf Guard on my gutters so I don't have to hassle with all that mess this year?"

    Most of my wider circle of friends and acquaintances don't know - and I think some of my more "inner circle" wish they didn't as I must be incredibly boring to them.  I do try and take an interest in their lives and families, but when I am so knocked out by fatigue or in pain from the SIRT spheres and wondering if they are going to work or if I'll be dead by Christmas, its pretty hard to worry about their latest spat with their sister or whether their kid is going to get that promotion.

    I am trespassing, as I belong on the Anal board and if you think people are uncomfortable talking about rectums (recti?) you should see them squirm when you say anal cancer!  All I can say is thank you for these boards where we can and do talk freely about anything and everything.

    Carol

  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Trubrit said:

    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

    "Like"

    image

  • ron50
    ron50 Member Posts: 1,723 Member
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    Difficult

    To shut me up. Ron.

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    ron50 said:

    Difficult

    To shut me up. Ron.

    lol Ron!  You make my day.

    lol Ron!  You make my day.

  • abrub
    abrub Member Posts: 2,174 Member
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    Trubrit said:

    Trying my best

    I like to think that I am careful when I do and don't talk about my situation. Let the spirit guide, so to speak. 

    In my little one day a week job, I talk medical with allot of people. If someone has or has had Cancer, I usually say something. 

    The other month, in the bank, the teller mentioned that she was leaving to take care of her mother. She immedietely teared up. She said she had just been diagnosed with Breast Cancer. I felt impressed to tell her that I was Stage IV. The look of astonishment on her face told me that I had done the right thing. She just assumed that Cancer meant death, and there I was, standing in front of her, looking healthy and robust, and Stage IV. I told her that Cancer is no longer a death sentence, and her mother may respond to treatment and be healthy and happy for many years (she hadn't been staged). The girl reached out her hand to mine, squeezed it, and told me how grateful she was that I had told her my situation. 

    I am all about helping people see that Cancer isn't an automatic death sentence. As long as I am blessed to be as healthy as I am at this moment, I want to give hope to others who are just starting their journey. We all know how great it is to hear from our long-time survivors (way longer than me). 

    So yes, I am very open about my conition, with reservations. I PRAY PRAY PRAY that I do not come across as the 'poor me' or 'look how wonderful I am' (which I am, of course image ), or use it as an excuse to get favours (thinking of JanJan's post). I just want to be there for other people. I want people to know, you can beat this, you can even stop it coming on sometimes, if you TAKE CARE OF YOUR BODY AND MIND. 

    Sue - Trubrit

    Very much like Sue

    I'm very open about my cancer, but don't jsut randomly bring it up.  If I feel that my sharing might be helpful, then I tell people.  However, I don't feel driven to tell everyone I meet that I'm a survivor.

    It's been interesting that in my work as a health insurance broker, clients hearing about my cancer know that I really do understand what they are going through. They feel more trusting.  Frankly, my goal is to help my clients get the best insurance/care they can.

    Alice

  • Loves_dogs
    Loves_dogs Member Posts: 5
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    ron50 said:

    Difficult

    To shut me up. Ron.

    I am not supposed to feel this sort of fear. If I feel it, it's not supposed to affect me. 

    I went into a suburban hospital expecting a stage I or II, but found out how many lymph nodes were cancerous after dinner, then looked the corresponding stage up at 3:00 a.m. (stage IIIB by ACS standards or IIIC by Cancer Centers of America's standard)

    I am depressed at this point and that's contagious.

    I'll see an oncologist in 2 weeks (5 weeks after surgery).

    NO I don't like talking about it. The only person I don't divert the topic with is a close friend with pancreatic cancer. 

  • Sue_2015
    Sue_2015 Member Posts: 19
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    I'm not comfortable talking about it.

    My hubs told all his relatives and our circle of friends (I'm 62 but I have no living relatives left.)  I was in denial for a long time because, after all, I'm a perfectly healthy, normal weight, get enough exercise and eat the right foods, kind of gal.  No symptoms whatsover of colon cancer and certainly was, and still am, in shock that there's a tumor in my liver the size of an orange.  If I hadn't seen the actual scans and watched the colonoscopy on the "TV screen" (awake sedation so that I could watch but not "feel" anything, but could see when the scope got to the tumor in my ascending colon)....I would still not believe it all if I'd not seen it with my own eyes.  How do you talk about something that you want to "ignore and hope it goes away?"  It can't be real, I must be having a nightmare.....

    When everyone was first told, they were all in shock and asked how I'm feeling.  (I was fine until I started chemo, and went downhill fast. When everyone saw how sickly I was getting, they actually stayed away, they can't deal with it.)  However, no one else has cancer, just anecdotal stories that they had a friend or acquaintance who had cancer but is dead now.  OH Great!  Geez. Thanks.  No one really knows how to talk to me about it.  No one has any "survivor" stories to tell me.  (Except for finding you all on this and other cancer forums.) 

    I've always been the "listener" and sounding board.  People always come to me to tell me their woes and about their aches and pains.  I'm fine with that.  (They still do it.)

    Next week I'm having a Sir-Spheres microspheres procedure where my liver tumor will be injected with radiation.  They say this will release radiation over the next 4 weeksk and start shrinking my tumor.  The shrinkage will continue "up to 6 months" and then possibly a liver surgeon can resect it. I'll be on a mainenance chemo pill called Xeloda for a long time, possibly.  Maybe, maybe not.  All will be fine and I'm assuming  by next Summer I'll be declared NED.  I'm optimistic about everything.  Why not? I can't let myself be depressed or pessimistic, it just doesn't work that way.

    Oddly, I can talk about it freely on these forums.  Thanks!

    Peace

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Sue_2015 said:

    I'm not comfortable talking about it.

    My hubs told all his relatives and our circle of friends (I'm 62 but I have no living relatives left.)  I was in denial for a long time because, after all, I'm a perfectly healthy, normal weight, get enough exercise and eat the right foods, kind of gal.  No symptoms whatsover of colon cancer and certainly was, and still am, in shock that there's a tumor in my liver the size of an orange.  If I hadn't seen the actual scans and watched the colonoscopy on the "TV screen" (awake sedation so that I could watch but not "feel" anything, but could see when the scope got to the tumor in my ascending colon)....I would still not believe it all if I'd not seen it with my own eyes.  How do you talk about something that you want to "ignore and hope it goes away?"  It can't be real, I must be having a nightmare.....

    When everyone was first told, they were all in shock and asked how I'm feeling.  (I was fine until I started chemo, and went downhill fast. When everyone saw how sickly I was getting, they actually stayed away, they can't deal with it.)  However, no one else has cancer, just anecdotal stories that they had a friend or acquaintance who had cancer but is dead now.  OH Great!  Geez. Thanks.  No one really knows how to talk to me about it.  No one has any "survivor" stories to tell me.  (Except for finding you all on this and other cancer forums.) 

    I've always been the "listener" and sounding board.  People always come to me to tell me their woes and about their aches and pains.  I'm fine with that.  (They still do it.)

    Next week I'm having a Sir-Spheres microspheres procedure where my liver tumor will be injected with radiation.  They say this will release radiation over the next 4 weeksk and start shrinking my tumor.  The shrinkage will continue "up to 6 months" and then possibly a liver surgeon can resect it. I'll be on a mainenance chemo pill called Xeloda for a long time, possibly.  Maybe, maybe not.  All will be fine and I'm assuming  by next Summer I'll be declared NED.  I'm optimistic about everything.  Why not? I can't let myself be depressed or pessimistic, it just doesn't work that way.

    Oddly, I can talk about it freely on these forums.  Thanks!

    Peace

    All Of What You Said Sue

    That pretty much sums up many of the things I feel.