some people don’t get it
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Kris:
Please don’t take this the wrong way but a good therapist who really listens to you can be a real godsend at times like this. I go to a counselor frequent and went weekly when I was having treatment. It’s safe place to go and say exactly what you need to say without fear that you are burdening someone who already has their ‘stuff’ to deal with and who will have no judgment about what you are saying.
Just a thought.
-Randi-Jenny:
Sorry your family members don’t “get it”. But I’m glad you got to go on vacation as a family! I was going to try to visit my parents before my resection, but of course my body had other plans. Instead I’ve had a scare that didn’t turn into anything. But I had to be here for tests. Now I think, with my drs’ approval of course, I might fly down to AL with them a few weeks after my resection and do my convalescing in their home. It’s much bigger than mine!!!
Anyway, to get back to the topic:
I know my Mom is in denial. Don’t get me wrong: she was a rock last year. I am so happy to have her and my dad and that they are still able to come up here to help me. But we were talking about finances and I said I was going to cash in my IRA to pay bills. She said I’ll need that when I get to retirement age. I tried to tell her this is possibly my retirement age! And, no, I’m not giving up. But I’m trying to be realistic.
If I am one of the lucky few to actually beat this thing for more than 10 years, I’m going to have a problem but I know the chances of living more than 10 years without a recurrence is slim. Of course, we never know, do we? There is more and more research being done every day. So I try not to dwell on that aspect. But it’s there.
Every time I try to explain it to Mom she cuts me off and changes the subject. I never had kids, but I do know that no mother wants to think about outliving her child. But it’s a possibility and I want her to be prepared. I think she has an idea of how serious it is, but refuses to discuss the possibilities. She barely listened when I told her if there were complications from my first surgery and I didn’t make it I wanted to be cremated and have my ashes scattered somewhere pretty with waterfalls, flowers, or something. No morbid urn. No grave. I have no kids so why??
I won’t even try to broach the subject to my dad. I don’t think he could have that conversation. So I tell him I’m doing good and hanging in there. I think he knows how serious it is. But we’ve never discussed it. We don’t have that kind of relationship.
The only person that had a clue as to how scared and lost I get is my ex boyfriend. Now it’s just me, God and my pillow that know.Here’s the line I love. But you have to picture it. Ready??
You run into a friend who knows what’s going on, but hasn’t seen you in a few weeks. They walk up to you and cock the head to the side and say “How ARE you? You look so good!” I have been told I look good more this year than the previous 47 years all put together!
I know it’s genuine concern, but some days I just want to write a note with what’s going on and pass it out. Otherwise I’m saying “hanging in there”, “feeling pretty good” and giving some updates over and over and over.It is funny how we try to spare other peoples feelings even if they haven’t really given a thought to ours. I guess I’d rather be that way then the way they are.
My favorite is when doctors would tell me I was young and healthy. No one every tells me I am young until I am sick…what’s up with that??
Hi Jenny,
I am sorry you were made to feel that way by your inlaws. I truly believe that if your husband looks good, they don’t really know how sick he is. It’s funny that the person with cancer is the one that puts up a good front to spare everyone else’s feelings. My daughter, Lauren, is the one with cancer. You wouldn’t know it to look at her. She has great color, is not skinny, and acts happy. Her hair is really short and coming back in. That is the only thing that gives her away. I can see when I look in her eyes that she is really scared and sad she probably won’t live to an old age, but to everyone else she hides it well. As her Mom, it breaks my heart. Take care and all the best to you and your dear family.
-Love, -Pam
I was just at Disney with my husband (has CC), our 5 yo son and some of my husbands relatives… they were so peeved with me because i was 20 minutes late coming down to leave in the morning because it was slowing down their data at Disney. that’s what they have to worry about…whether or not they’ll ride the teacups this trip to Disney or one next year (they live in FL). they made my husband feel like they didn’t care, didn’t wait up for us to go on rides… and I honestly think it is because my huband ‘looks’ pretty good. He’s also lost weight that was needin’ some losin’ and with pain management can get through the day OK most of the time. that’s what they see.
What I see is a tired, in pain, worn out man who pushes himself to be the best he can be for his wife and boy, so the family and friends don’t get uncomfortable or freaked out about the cancer thing, and pushes to get as much out of life as possible.
I’ve been pretty spun up about how they treated him/us on our day(s) togehter. Do people really not get how serious, life-threatening and life altering this is??! that’s what frustrates me.
i feel your pain. Some people just don’t get it.
Jenny
Ike: I get that all the time, too. I have lost about 50 lbs. Most times I just say thanks. If I want to get into it, I will. But if I haven’t seen the person or don’t know them very well, I just say thank you for noticing the weight loss kind of thing. I’ve also gotten my hair cut short, and most people say I look really good.
I probably look the healthiest I’ve looked in almost 10 years, believe it or not. Unless you see the scars.
If it’s someone I know well enough that I want to possibly share my story with, I start by saying “thanks, but it wasn’t intentional.” If they pick up on that, I usually give them the short version. If they want more info, I lengthen the version. I do get a lot of “so is that a wig?”. NOPE. My hair. All of it. Not all chemo makes you bald. Not all chemo makes you throw up like on TV. But stay away from my feet because if you touch them I’ll deck you! The pain in my feet is bad at times. But that doesn’t show.
I’m happy for you that you are doing so well, and you had surgery. Hopefully next month I’ll be recuperating from mine!!!!Julia: My troll is a virtual exercise. Someone told me to envision Pacman running around eating the tumor. I tried that, but Pacman didn’t work. It kept stopping. Suddenly this rocky looking hand reached out from the side of my “vision” and used an axe-like hammer to knock off a chunk of my picture of the tumor. The hand picked up the piece of tumor and brought it to this happy smiling rocky troll face. Someone asked me what color he is and I don’t see him in color, just kind of a line drawing. But he happily chopped off pieces of the tumor for months. And the tumor shrunk at an amazing rate (for me, anyway).
The onc stopped chemo in Nov. because of my hospital stay. I ended up having a touch of pneumonia and a sack of bile in the left lobe of my liver. I gave the troll a straw and he happily sipped.
The troll kept eating every few nights. And sipping. A few weeks later we did another scan and the bile sack was unbelievably small!
Feb. came and went. He kept eating every few days. And sipping once in a while. I started to get nervous about the chemo not working anymore since it had been so long since I had it. Then my surgeon said we could schedule the surgery. In March the troll crossed his arms and refused to eat. At the end of March my surgery was canceled because of a lung problem and I found out the tumor had grown. I went back on chemo and have been “coaxing” him to eat a little every few nights. He’s not eating like he used to, but at least he’s eating. I’ll take that as the Xeloda isn’t working as well as oxaliplatin and FUDR worked, but I’ll take it if it’s working at all!
The other night I was praying. My prayers are long and I mention quite a few people by name. One of my close friends has IBC. She had a mastectomy in June and radiation ended in Nov. In Jan. they told her one of her lymph nodes is affected again, but so small as to not be noticed if she didn’t have the history. So she is on clinical trials. ANYWAY, I got to her name and the troll showed up in front of her face. He reached into her collarbone area (where the affected node is) and pulled out an M&M looking shape. He put it in his mouth and smilingly chomped away. I got to Kim’s name and he did the same thing with her head (she has cancer in her head… undergoing radiation). And when I got to Tiffany’s name, he did it again to her liver.
Now I get requests. I can’t make him eat, but I tried sending him to a few people. He wasn’t that hungry but I got him to “nibble”. Now I’m going to say “Get your own troll!!! I need mine to eat the crap in my body!!!” heeheeThat’s the story of my troll. I hope you enjoyed it.
I hate to say it, but sometimes people do look “good”, going through my ordeal last summer that ended up resulting in surgery removing my bile duct and gallbladder with a benign tumor, I lost around 35-40 pounds in 3-4 months which I had been needing to loose for years. Since then I have gained about 5-10 of those pounds back (a lot of that in muscle mass), anyway the other day I ran into an old friend that I had not seen in a couple of years, and he made a comment about me looking good, looking like I had lost some weight, etc. and I told him it was not intentional, but I was doing good now, etc.
anyway, best of luck to you with the surgery, and while I do not know exactly what your going through, I can at least say I have been close to it, did a potentially risky surgery, get to go see the doctor for liver level blood work every 6 months for the rest of my life, and all that.
Ike
I like when people tell me about all the people they know who had cancer and died. Or how glad they are that no one in their family has cancer.
But I do cut people some slack. They are really trying to say the right thing, they just don’t know what to say so they stay stupid things. I try to be gracious.
In your circumstance, i am not sure what that woman is thinking. Possibly trying to find anything to get some sympathy for herself. Sad.
-Randi-
Kris,
I know, it is so tough. People don’t know what to say so they end up saying the wrong thing and we end up comforting them. Ironic to say the least.
I love it when people tell me they were so sick they were dying, you know because of a head cold or something.
hang in there!
Susie
Please tell me more about your troll, Kris. I seem to have missed that thread.
He sounds GREAT!!
Julia x
Pam:
I am really open about everything. If I ever get to the point where I can start looking for a job, I’m going to have to tone it down. But I post on FB for my friends to know what’s going on. And I have a caringbridge site.
So she reads when I’m in the hospital, when I’m having tests done, when I’m worried about something.
I just think she was being very selfish and thoughtless, especially since, if you don’t know me, you wouldn’t know I have cancer. I do not say I’m sick. I say I’m not sick, I just have cancer.
Thanks for the encouragement. Didn’t anyone ever tell Lauren to visualize pacman or something to eat her tumor??? That’s how I got my troll. Pacman didn’t work and all of a sudden this hand reached out and I saw the troll. Ok. So I have a troll that eats my tumor. And he drinks my fluid buildups, too!
I asked my oncologist months ago, why do people always say “Well, you look good”? He said because they don’t know what else to say, and that he hears this same question all of the time from his patients. I learned to just smile and answer back, “thank you”. Amen to your venting Kris. I look at my eyes in the mirror every day too. And every morning when I open my eyes, I thank God for giving me another day on earth!
Hang in there!Cindy
Kris,
Maybe you need to sit her down, if she matters to you, and tell her everything. People assume just because you look good, that you aren’t that bad. I don’t know how many people Lauren has sat down when the time was right and laid it all out to them. They had no idea she was that sick. They think all really sick cancer patients are skin and bones, pale, and have no hair. They have no clue as to what you, Lauren, or anyone else with CC really goes through. Probably because you are all such tough nuts that are fighting so valiantly and put up a good front. The people that truly matter know what you are going through and hope and pray for you daily. Like all of us here!! She doesn’t really sound like she is worth your energy to worry about it. We love you, Kris, and are here for you. We know that every day is a struggle and you are an amazing person. Take care and thank you for sending your troll to visit Lauren!
Love you girl,
-PamMy response as I was reading your post was also HUH?????????????
Vent away you deserve to and need to.
People really don’t get it.Shortly after my husband passed away someone said to me that they totally understood what I was going through. I asked her when her husband passed away and she said “he didn’t, he divorced me!” What?????? She then went on to say that it was actually worse for her than for me.
I have found that there is nothing you can say to people like that as no matter what, they will justify their response with another stupid response.
Just come here and vent and know we all care and understand.
Hope things are going well for you, atleast for today.
Love & Hugs,
Darla
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