July 9, 2010 at 4:53 am #38633devoncatParticipant
I put on so much weight when I was on steroids. Every week before they gave me chemo, the weighhed me and every week I put on 2 pounds. Now that I am off steroids, I am melting, but while on them, I puffed up big time.July 9, 2010 at 3:01 am #38632
I hate when somebody looks at me and while he/she does not say a word, he/she is clearly thinking “I thought people were cancer LOST weight. What’s up with her?”July 6, 2010 at 3:05 am #38631lisaParticipant
I hate that our beloved caretakers and family have to suffer while we fight this terrible disease.July 6, 2010 at 12:17 am #38630kimmieParticipant
I am just a family member, it’s my mother who has CC. I’ve been back on this website multiple times a day since a week ago Friday when my mother was told her CC had returned after her resection July 2009 and chemo through December.
I’ve avoided reading this one post, too afraid to read first-hand what you all hate about this disease the longer you deal with it. I should’ve read it sooner though, I have laughed, cried and gained more of an understanding of what my mother must be feeling, and what she may start to feel as it progresses.
Even though I’m not a CC patient, and not even a caregiver (yet), I’d like to add a few:
– I hate that my mother is only 63 and facing this beast.
– I hate this question that’s usually just below the surface of my subconscious and occasionally very much on the surface: why HER of all people?
– I hate that my kids, ages 9 and 11, won’t have her around longer. And that my sister’s youngest, who is 4, eventually may not even remember her.
– I hate that I can’t say or do anything to help her feel better emotionally. I feel like it’s my “job” as eldest daughter to help cheer her up and keep her mind on happier things. But we don’t have the deeper, “tougher” conversations. I guess that will come.
– I hate that there is no solution, no cure, no way to make this go away. I am a “get it done” kind of person, and there’s nothing I can do to fix this.
– I hate that my mother’s soul mate, her husband of almost 46 years, can’t be her rock during this awful time. His dementia has taken our “old Dad” from us and he just isn’t the same. She needs him, we all do. He was always the strong one in the family, the one we all relied on.
– I hate that I can’t sleep well anymore. That my brain kicks into high gear when I turn the light off at night, that I wake up every 2 hours or so, that I lay in the dark and vacillate between optimism and total despair. I swear most nights I hear this faint whisper in my head saying “cancer… cancer…” over and over.
– I hate all the not knowing. Not knowing what the plan is yet for palliative measures for this recurrence, how long she will live, what the symptoms will become as it progresses. Not knowing how I will function as a human being once she is gone.
– I hate that my husband doesn’t understand. He is the most incredible husband, father and son on the face of the earth. He bends over backwards to help me, emotionally as well as with the kids, the house, etc. Always has. But sometimes he’ll ask, “What’s wrong?” Why doesn’t he realize that my mother’s cancer is on my mind 24/7? I feel like that, unless it’s your own mother, you just can’t understand how I feel.
– I hate that many of my friends aren’t sure what to say. That they feel like not talking about it somehow helps me.
– I hate that I never had any desire for any profession in the medical field, that’s always been my sister’s calling. Yet here I am, able to spell cholangiocarcinoma, I know the difference between hemoglobin and hematocrit, I can read a CT scan, that I even know what a tumor marker is let alone normal ranges. That I actually enjoyed watching the TV monitor during my mother’s lower GI procedure – I thought it was the coolest thing.
Whew. OK. That was waaaay more cathartic then you can ever imagine. Honestly, I feel more clear headed than I have in almost 2 weeks.July 5, 2010 at 9:42 pm #38629
Amen, Betsey!July 5, 2010 at 5:09 am #38628lisaParticipant
Irene – I’m so with you on those two pet peeves.
“You look good” – right now I am orange and hairy.July 5, 2010 at 4:29 am #38627
Oh wait — being accused of “playing the cancer card.” That’s a favorite too.July 5, 2010 at 4:27 am #38626
How about: “You don’t LOOK sick!”July 5, 2010 at 2:36 am #38625kathybMember
I hate being the person with cancer. The selfish part of me would rather be the caregiver. I’ve been both.
I hate belching like a man, having gas, and the tears that come so easily. Things that did not describe me “before cancer”. I told my husband recently that I am not the person he married. (He replied that he wasn’t either. Truth is, he’s better than the person I married.)
I get down when I think about being or becoming a burden to him, while his focus is to be optimistic, do the right things, and for me to get better. He actually says he feels blessed to be able to take care of me.
I HATE CANCER, but I am very much blessed. Thank you, God.July 4, 2010 at 9:05 pm #38624betsyParticipant
I like that idea much better and actually comforts me. I was at a July 4th picnic today and was told that my suffering in this life was redemptive and was helping my deceased brother in the afterlife. I really didn’t know what to say to that.
BetsyJuly 4, 2010 at 3:55 pm #38623donna9Member
Betsy, my husband had said for months, God doesn’t give you what you can handle,. God helps us handle what we are given…….July 2, 2010 at 4:16 pm #38622devoncatParticipant
You guys made me smile because it brings to mind Caroline Stoufers (I hope I spelled that right) video that high school students made with her and was played at her memorial service. Someone comes up to her and talks about coffee enemas and the next scene you see her scouring the coffee aisle with a twinkle in her eye. Thanks for bringing to mind an incredible woman and one of the first people I “met” on this site.
KrisJuly 2, 2010 at 3:51 pm #38621kristinParticipant
Oh yeah… And I’m SO tired of friends’ cousins who come bubbling up to me with some book about how someone cured their early-stage breast cancer with fasting/ cottage cheese/ rays of colored light/ soybean extract/ breathing exercises. Then they always insist that I must MUST try this! Now! Immediately!
Arrggghhhhhhhhh!!! (says Ms. Hippie-Holistic-me.) Do they think I’ve really been sitting here for 6 years without doing any reading or research of my own?!
KristinJuly 2, 2010 at 3:44 pm #38620darlaParticipant
My answer to that is “What ever made him think I am that strong?????”
Another one I’m not to fond of is “Everything happens for a reason”. I still haven’t figured out what that reason is!
DarlaJuly 2, 2010 at 2:16 pm #38619betsyParticipant
I hate being told that God never gives us more than we are designed to handle. If one more person says that to me or gives me a book about it, I’m going to scream.
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