You don't look like you have cancer.

2

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Empathy and Sympathy

    Two different things and most people have some of it, but most not and definitely not at the same time.  If you show some type of struggle from treatment or surgery due to your diagnosis after they visit you in the hospital or home, they end up leaving and going on with their daily life never thinking of, or rarely, of your struggle.  It's happened in my family and as shocking as it was - that's reality.  It's sad but do you ever think before your diagnosis when you asked people "how are you?" they would answer but after that you gave it no thought.  It's human nature.  Sad isn't it?  Here I'm concerned about everyone as I've felt a bond here.  No one else knows us better than US.

    Hugs!  Kim

  • darcher
    darcher Member Posts: 304 Member
    No one knows

      how we feel unless they have it.  It's as simple as that.  It applies equally to medical staff as it does our relatives and friends.  I had the pre-op  nurse just stare at me for a good 10 seconds without saying a word.  It creeped me out until she said, "You know, you don't look like you've got anything." It was surprising but also relieving that she wasn't completely nuts.  I've seen a few that were off their rocker.  I couldn't imagine having to do that knowing some of the patients aren't going to make it past the operation, the next few months, or to the end of the year.    

      I like what Twinzma said, "If I looked how I felt, I'd scare your children"  That made me laugh.   I've wanted to say something like that on more than one occassion. When someone says that, especially on the days you're feeling like hell you'd like to slap them but then again, how are they supposed to know that radiation damages your pee functions or any of the long list of things. Hell, it's going to cost me more to get my teeth fixed than I spent on the deductable for the cancer treatment.  

     

  • beaumontdave
    beaumontdave Member Posts: 1,229 Member
    I took the observation as a

    I took the observation as a compliment almost all the time, and I did keep working and exercising through the process, but once in a while it felt like someone was getting glib with me, and my response involved hard stares and language I won't bring here. People don't think sometimes about what's coming out of their mouths, and I was happy to give them pause...................................Dave

  • abita
    abita Member Posts: 1,143 Member

    I took the observation as a

    I took the observation as a compliment almost all the time, and I did keep working and exercising through the process, but once in a while it felt like someone was getting glib with me, and my response involved hard stares and language I won't bring here. People don't think sometimes about what's coming out of their mouths, and I was happy to give them pause...................................Dave

    You excercised? For the chemo

    You excercised? For the chemo for the recurrence, I am not having surgery. THe surgeries really wiped me out. But I am hoping that this time, even if it is just 20 or 30 minutes with light intensity, to get some cardio in for the second week of my chemo cycle. My impetus was how great getting back to cardio ade me felt in that few weeks between endig chemo and my post chemo scan when I thought I was going to be okay. I also read that it helps a bit with the fatigue and even helps the chemo fight the cancer. Not sure about the last two. My gym is far though.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,278 Member
    abita said:

    You excercised? For the chemo

    You excercised? For the chemo for the recurrence, I am not having surgery. THe surgeries really wiped me out. But I am hoping that this time, even if it is just 20 or 30 minutes with light intensity, to get some cardio in for the second week of my chemo cycle. My impetus was how great getting back to cardio ade me felt in that few weeks between endig chemo and my post chemo scan when I thought I was going to be okay. I also read that it helps a bit with the fatigue and even helps the chemo fight the cancer. Not sure about the last two. My gym is far though.

    Exercise

    I think exercising and keeping a high blood level of Vitamin D are two of the easiest things we can do to give us a survival advantage.  You don't need a gym to get exercise.  You can walk out your front door and get an hour or two walking down the street (as long as your neighborhood is safe).  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member

    Exercise

    I think exercising and keeping a high blood level of Vitamin D are two of the easiest things we can do to give us a survival advantage.  You don't need a gym to get exercise.  You can walk out your front door and get an hour or two walking down the street (as long as your neighborhood is safe).  

    Cardio

    I'm not able to do cardio with two hip replacements and a bum hand know, but agree with Sandia that walking is a wonderful exercise.  I'm able to walk (when the bathroom doesn't call) during the day.  My Fitbit is always on me.  It's always good to get some type of exercise no matter how you do it.  I'm glad that you can get cardio in.  That's awesome.

    Kim

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    How about

    being asked what's your prognosis? Someone asked me that and I swear my eyebrows skyrocketed.  Unless you're my doctor or it came from the patient himself or a very realistic immediate family member, I don't think any friend SHOULD ask a cancer patient what his prognosis is.  What, do you expect me to say Oh I'm so happy I was told I've got x months/years to live! Geez.  But I know that person meant well, I just hope people will be a bit more sensitive to the do's and dont's of language.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited September 2018 #29
    Not looking sick

    I sure hope this link works. It's something I shared on Facebook. For me, this woman explains very clearly the choice some of us make when we go out in public. 

    https://m.facebook.com/story.php?story_fbid=10160160394845523&id=696705522

     

  • Trubrit
    Trubrit Member Posts: 5,643 Member

    Not looking sick

    I sure hope this link works. It's something I shared on Facebook. For me, this woman explains very clearly the choice some of us make when we go out in public. 

    https://m.facebook.com/story.php?story_fbid=10160160394845523&id=696705522

     

    Wonderful!

    That was vey well written and probably describes most of us, when we are going through treatment - well, the men might not do the make-up and hair -  but you know what I mean. 

    I'm going to see if I can find it and share on my FB page. 

    Thanks for posting the link. 

    Tru

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Trubrit said:

    Wonderful!

    That was vey well written and probably describes most of us, when we are going through treatment - well, the men might not do the make-up and hair -  but you know what I mean. 

    I'm going to see if I can find it and share on my FB page. 

    Thanks for posting the link. 

    Tru

    So glad

    Tru, I'm so pleased you were able to access it. I return to that passage often for inspiration (I shared it on my FB as well). I get the comments on just how good I look, even from physicians! It sucks that people can't 'see' our pain. I'm meeting friends for dinner tomorrow. Will be using a walker as my hip is still healing. I know it will be good for me. I'll probably spend lots of time getting ready, so I don't appear my usual raggedy self. Lol.

  • Trubrit
    Trubrit Member Posts: 5,643 Member

    So glad

    Tru, I'm so pleased you were able to access it. I return to that passage often for inspiration (I shared it on my FB as well). I get the comments on just how good I look, even from physicians! It sucks that people can't 'see' our pain. I'm meeting friends for dinner tomorrow. Will be using a walker as my hip is still healing. I know it will be good for me. I'll probably spend lots of time getting ready, so I don't appear my usual raggedy self. Lol.

    Enjoy your friend

    I am happy that you will be heading out with a friend.  The effort will be worth it, I'm sure. 

    Tru

  • Kazenmax
    Kazenmax Member Posts: 458 Member
    Jeans

    When I was getting ready for my APR surgery, I saw the ostomy nurse. She was supposed to mark the area on my stomach where my permanent ostomy would be placed.

    I was trying to deal with the fact that yes, I would have to wear a bag the rest of my life. It was not a good time.

    That day I wore my jeans with a belt. They fell just below my belly button. The first thing she said to me was..."you won't be able to wear these any more. the waist line falls right where your ostomy will be. You will have to start wearing comfortable clothes."

    While it might have been true, I was devastated. I wore jeans every day! However, it's been over 2 years since that comment and I am happy to say that I have found stylish clothes to wear. Yes I wear long skirts and pants with elastic waistlines but I also found comfortable jeans to wear. I have adjusted to the bag. It's just a part of me know. It's how I am able to be alive so I try to not resent it. I have my ups and downs but I'm glad to still be here.

    People don't realize how their words can hurt. 

    k

  • mountainhiker
    mountainhiker Member Posts: 54

    Exercise

    I think exercising and keeping a high blood level of Vitamin D are two of the easiest things we can do to give us a survival advantage.  You don't need a gym to get exercise.  You can walk out your front door and get an hour or two walking down the street (as long as your neighborhood is safe).  

    Just keep an eye on it

    I agree that high levels of Vitamin D are beneficial; however, anyone supplementing should be getting their blood levels checked.  I was supplementing approx. 14,000iu/day and hadn't had my levels checked in over a year.  Once my oncologist found out she checked my blood and I was at what some would consider toxic levels.  In fact, after I left her office and was on the train headed home her nurse called and left messages at my office, home and on my wife's cell telling me to "immediately stop taking all vitamin D supplements" - I take it she was a bit concerned.

    mountainhiker

  • Tunadog
    Tunadog Member Posts: 235
    I wear pants with suspenders ....

    Then a loose shirt that mostly covers it. My pants are baggy 

    Good Luck 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Kazenmax said:

    Jeans

    When I was getting ready for my APR surgery, I saw the ostomy nurse. She was supposed to mark the area on my stomach where my permanent ostomy would be placed.

    I was trying to deal with the fact that yes, I would have to wear a bag the rest of my life. It was not a good time.

    That day I wore my jeans with a belt. They fell just below my belly button. The first thing she said to me was..."you won't be able to wear these any more. the waist line falls right where your ostomy will be. You will have to start wearing comfortable clothes."

    While it might have been true, I was devastated. I wore jeans every day! However, it's been over 2 years since that comment and I am happy to say that I have found stylish clothes to wear. Yes I wear long skirts and pants with elastic waistlines but I also found comfortable jeans to wear. I have adjusted to the bag. It's just a part of me know. It's how I am able to be alive so I try to not resent it. I have my ups and downs but I'm glad to still be here.

    People don't realize how their words can hurt. 

    k

    Ostomy placement

    So interesting, K. My ostomy nurse told me jeans were wearable! She was quite positive. I wasn't really thinking straight pre-surgery, but I can wear regular jeans when I want. Tighter pants definitely have an effect on the 'flow,' but they are possible. I wear a size up sometimes. Shorts have been awesome with my broken hip. Oh, and I'm almost at my year anniversary for the surgery. I can honestly say that although there might be one messy day each month, fir the most part, my colostomy is a blessing.

  • Trubrit
    Trubrit Member Posts: 5,643 Member

    Ostomy placement

    So interesting, K. My ostomy nurse told me jeans were wearable! She was quite positive. I wasn't really thinking straight pre-surgery, but I can wear regular jeans when I want. Tighter pants definitely have an effect on the 'flow,' but they are possible. I wear a size up sometimes. Shorts have been awesome with my broken hip. Oh, and I'm almost at my year anniversary for the surgery. I can honestly say that although there might be one messy day each month, fir the most part, my colostomy is a blessing.

    I Still have a messy day......

    at least once a month, and that is with no ostomy, so I would say you are doing wonderfully. 

    Your positive attitude is a great blessing; not only to yourself, but to those of us reading your posts. 

    Tru

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,278 Member

    Just keep an eye on it

    I agree that high levels of Vitamin D are beneficial; however, anyone supplementing should be getting their blood levels checked.  I was supplementing approx. 14,000iu/day and hadn't had my levels checked in over a year.  Once my oncologist found out she checked my blood and I was at what some would consider toxic levels.  In fact, after I left her office and was on the train headed home her nurse called and left messages at my office, home and on my wife's cell telling me to "immediately stop taking all vitamin D supplements" - I take it she was a bit concerned.

    mountainhiker

    Level

    What was your level when they declared it toxic?

  • mountainhiker
    mountainhiker Member Posts: 54

    Level

    What was your level when they declared it toxic?

    Potentially toxic

    It was 120 ng/mL.  MSK says there's an increased risk of hypercalciuria with anything over 80 ng/mL (which, over time could affect renal function).

    mountainhiker

  • mountainhiker
    mountainhiker Member Posts: 54

    Interesting

    According to Dr. Holick (the vitamin d doctor), lifeguards have levels as high as 200ng/dl.  Some studies show the highest benefit for avoiding recurrence being levels of over 80 and closer to 100.  I guess there is conflicting information in this area.

    Continued high levels

    Not sure, but maybe the high levels in lifeguards are only temporary since they typically work during the summer months.  Also most people don't spend their entire careers as a lifeguard so it's not a long-term deal (of course there are exceptions).  All I know is that my oncologist's nurse was determined to get in touch with me asap to tell me to get off the supplements immediately.  I love her - she's so persistent.

    mountainhiker

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,278 Member

    Potentially toxic

    It was 120 ng/mL.  MSK says there's an increased risk of hypercalciuria with anything over 80 ng/mL (which, over time could affect renal function).

    mountainhiker

    Interesting

    According to Dr. Holick (the vitamin d doctor), lifeguards have levels as high as 200ng/dl.  Some studies show the highest benefit for avoiding recurrence being levels of over 80 and closer to 100.  I guess there is conflicting information in this area.