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You don't look like you have cancer.

abita's picture
abita
Posts: 647
Joined: Dec 2017

I took a car service home from the pet scan. The driver asked why I was there, told him, and he says, you don't look like you have cancer. I get that a lot. In fact, at my pre-surgery vitals a few days before my liver resection, the admin said that to me when we got to the point where we got to why I was there. What do you say when someone says that. This time I said, well, I hope you are right, I will find out Friday.

Twinzma
Posts: 212
Joined: Jan 2018

" Funny, you don't look stuipd"! Actually there are some websites that lists good comebacks for these remarks. My personal favorite is "Thank goodness you told me this, I must be totally cured" another I am fond of is "If I looked how I felt, I'd scare your children. Humor is the best medicine so go with it! Us on the otherside of this disease only have good intentions, it's not until you are sick that you realize that you really had diareaha of the mouth. 

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I've gotten that a lot. I just explain that there are a lot of chemo drugs and different drugs have different side-effects on different people.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

and hope that you really don't look like you have Cancer. 

Tru

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

i get that all the time too. But personally it makes me happy that I don’t look like I’m sick.  My outside appearance  certainly doesn’t match my inside. 

My scan last week showed my cancer had chosen to visit my lungs. maybe there’s a little something in my liver and maybe not, that seems to be up for debate.  At any rate in a couple weeks it’s back to chemo I go

hopefully I won’t look sick for a long long time 

abita's picture
abita
Posts: 647
Joined: Dec 2017

It looks like we will be on the ride at the same time. My scan showed 4 spots on liver. Got pet scan today to know how many and where spots are as my oncologist said there may be some too small for the other scans. Seeing for results on Friday which is I guess when I will get my treatment options. And I too like that I look okay. Hoping you and I have an easy, successful ride this time.

myAZmountain
Posts: 270
Joined: Apr 2018

That your PET scan is okay !! I am lucky that my spouse works at the hospital and can find out reults the same day--it is agonising to wait!!

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

Sorry you didn't get better news.  Hoping that this new treatment will knock it out and you can tolerate it.

Kim

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

When I was first diagnosed in 2005, my onc told me that us folks (CRC patients) don't look like they have cancer.  And that some people will comment on that.  The thing is that I don't care.  If you feel the need, just explain that different chemo drugs work differently and that all things considered I might actually be a tiny bit better off than the people who "look like they have cancer".

 

People who say this mean well, and while they may be invading your personal space a bit, they are correct in that most of us do not look like we have cancer.  (Most people don't associate wearing gloves or Uggs in the grocery store with cancer / chemo.)

 

My 2 cents.

 

Betsy

Stage 4 - diagnosed 5/05

 

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

It's terrible that people say that but while going through it myself I'd get the same thing and felt like crap.  Someone actually said to me once that "Wow you look a lot better than you did a couple month's ago."  Why would anyone say that anyway.  Do we all have to look bad.  It's frustrating, that's for sure.

Kim

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

because I didn't lose my hair!  Some of the brilliant comments we get.....

 

Alice

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

That was another comment that my hair didn't look that bad.  People, sometimes they just don't know what to say and when they do you just sliently want to "slap them."  LOL

Kim

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I went off to church once, when I really should have stayed home.  

I ended up having to leave; and later, our Bishop came to me and said 'I thought you were about to die, you looked awful'. HA! 

Say it like it is, Bishop. 

Yeah, there were times when I literally looked like I was on death's door.  Of course, at those times, we don't go out, do we; so people see us on our good days, and we either look normal or a bit beat up. 

I did lose my hair and looked like Gollum - until I shaved it off - then I looked like I had Cancer. I aslo went a bit yellow. Not jaundice yellow, but what I called Chemo yellow. That didn't look good. 

To be honest, i wanted to look sick, so that people would not make silly comments. Now that I am NED, and people find out I am Stage IV, I am happy to tell them that Cancer can be beat, even if it isn't forever. 

Tru

 

abita's picture
abita
Posts: 647
Joined: Dec 2017

That is really all I want. To beat it. And live a long happy healthy life. Getting a recurrence right after finishing chemo is such a let down. I was so optimistic before.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I had one clear scan after my treatment, and then my next scan, liver met.  I remember the feeling; like someone had punched me hard in the gut. Of course I thought that was it, I was definitely going to die. But then the fighting spirit came back, and thats what you need to do. Roll with the pain of hearing the bad news, but always let that fighting spirit rise up and move you forward. 

You CAN be optomistic again; just allow yourself a little time to hurt from this most recent news. 

Tru

abita's picture
abita
Posts: 647
Joined: Dec 2017

Thank you. That is exactly what happened. I was in 3 of the stages of grief, felt sucker punched, finally got all cried out. I started to feel better, except horrible nighmares, and then McCain passing from a cancer battle just put me in a deep depression again because it made me think of when I go. Funny, after my scan, I felt better, but I think I just always get a temporary up from leaving the hospital. When I got that horrible news, all my worry about my hair, the weight I gained during chemo, all that disappeared.

zx10guy
Posts: 207
Joined: Dec 2013

I'll probably get the wrath of the posters here.  But I don't see a problem in some of the commments.  It may come off as insensitive but I think many times when you're in the thick of things, you might be a tad more sensitive to comments no matter how benign.  The wording may be bad but the person could just mean you're looking good despite having one of the worst diseases one can get.

I've had people say to me I looked good when I was going through treatment.  I took it as they were trying to say something nice to start the conversation.  What else would you have them say?  Having someone ask you how are you is such a loaded question I'd rather not have anyone ask that as a starter.

Something else to consider is how people's image of cancer patients have been shaped.  Movies and TV has conditioned people to think cancer patients immediately shrink into skin and bones, have skin problems, lose their hair, can barely move about, and are constantly dragging an IV station with them.  I think we have to cut most people some slack as there is no malice behind their comments.

abita's picture
abita
Posts: 647
Joined: Dec 2017

I agree with all of that. I just think it is interesting because it even happens when I feel my worst

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

I try and keep the conversation light..

I had a friend of my wife call from out of state. After talking for a bit she said I sound great (she hasn’t seen me).

Jokingly I remind her that I have rectal cancer, not throat cancer.

When people tell me how good I look, I take it as a compliment 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I don't mind people saying I look good or don't look like I have cancer. I take it as a compliment. And I think, too, that  people are  sometimes  surprised and relieved to discover that a person can actually look normal and get out and do things even with such a diagnosis. It's way better than being told you look like death wamed over- which I've never been told, but have felt like at times  this past week. But as Tru says, when that happens,  I don't go outWink 

LeoJ
Posts: 13
Joined: May 2018

To be blunt, compassion (not empathy, that is different) is in short supply and that can shock us, especially because everyone, all humans, are unique in the animal world for understanding our own mortality and should be sensitive to the suffering that is part of life, our daily existence.

I was surprised but on reflection should not have been, when the more self-absorbed of my near relatives shrugged off the post-surgery effects of my sub-total colectomy, some effects to be life changing but many of the worst lasting many months.  They imagined that the 'chop' changed everything, that I was renewed (like a car out of the panel shop) and if I wasn't out there with a full social life and heading off on world travel to celebrate my good fortune, I really must be a 'glass half-full type'.  

But those reactions are encountered throughout life and are common.  For example, what about the insensitive and often victim-blaming (and wrong!) assumptions about parents and grandparents who suffer the alienation of children, esp adult children? That is why we moderate what we tell individuals and also, why we seek the understanding, experience, advice and solace of linking with fellow sufferers and carers on forums like this.

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

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's picture
darcher
Posts: 257
Joined: Jun 2017

  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's picture
beaumontdave
Posts: 996
Joined: Aug 2013

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's picture
abita
Posts: 647
Joined: Dec 2017

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's picture
SandiaBuddy
Posts: 893
Joined: Apr 2017

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's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

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

mountainhiker
Posts: 54
Joined: Aug 2018

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

SandiaBuddy's picture
SandiaBuddy
Posts: 893
Joined: Apr 2017

What was your level when they declared it toxic?

mountainhiker
Posts: 54
Joined: Aug 2018

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

SandiaBuddy's picture
SandiaBuddy
Posts: 893
Joined: Apr 2017

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.

mountainhiker
Posts: 54
Joined: Aug 2018

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

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

You taking 14,000 a day seems high.  My Vitamin D was low before treatment but doctor only suggested a 1,000 mg a day supplement.  I'll take between 2,000 to 1,000 daily but nothing more.  How were you taking so much?  Just curious.

Kim

mountainhiker
Posts: 54
Joined: Aug 2018

Breakfast

Multivitamin (w/2,000iu)

D3 softgell (2 - 2,000iu each)

Lunch

D3 softgell (2 - 2,000iu each)

Dinner

D3 softgell (2 - 2,000iu each)

Grand total of 14,000iu/day.  Now that I think about it, seems like a lot.

mountainhiker

plsletitrain
Posts: 253
Joined: Jul 2017

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's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

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's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

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's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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

Tru

Kazenmax's picture
Kazenmax
Posts: 357
Joined: Feb 2016

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

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

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's picture
Trubrit
Posts: 4856
Joined: Jan 2013

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

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

So good to hear about you being ok with the ostomy placememt BRH.  Before my placement my ostomy nurse marked my jean mark just to make sure that the doctor placed the ostomy in the correct position.  

Kim

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

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

Good Luck 

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  I don't have to use a bag but more often than not I need to wear depends.  Today, I didn't and went to pick up my two little ones from school.  I was nervous going to their school and as luck would have it pre-school was let out late.  I didn't think about it until I noticed the time and it was well past 10 minutes after and there was a long line of parents.  Right then I got the urge of having to go pee. Normally I would use a pee cup but it was in the truck and I was stuck. 

 I made it to the point of getting both of them without having a blow out but once we got home me trying to unbuckle the 4 year old prevented me from being able to hold it anymore.  Out it came and soaked my pants and shoes.  At least it wasn't in front of all the parents picking up their kids.  That would have been beyond embarrassing.  The school is aware of my condition but I doubt anyone else is.  I don't get "the looks" from many people outside a few of the teachers.

    

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