You don't look like you have cancer.

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

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 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.

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).  

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 said:

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

 

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 said:

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.

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

Tru

SandiaBuddy said:

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).  

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

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

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.

mountainhiker said:

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

What was your level when they declared it toxic?

SandiaBuddy said:

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.

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