June 15, 2010 at 6:41 pm #38602
sorry for your loss….but welcome here. Please come back for much needed support in your grief and to share your story when you’re ready in a different section. We would all like to get to know your mother and “remember her” with you.
My best wishes for you and your family.
Linda Z.June 11, 2010 at 4:25 am #38601motherMember
I hate that my mom died last week of this disease.
I hate that I’ll never talk with her again.
I hate that I’ll never get advice from her again.
I hate that she is gone.
I hate that no doctor had any interest in saving her.June 10, 2010 at 8:36 pm #38600
All I can say is AMEN!!!!
Linda Z.June 9, 2010 at 9:02 pm #38599kentuckyjackMember
I’m not at all happy that we become dependent on well-paid people who can make monumental mistakes concerning our lives.
And I’m pretty pissed at having to learn that I must truly impoverish myself–(even to the point of forced selling of family burial plots) in order to qualify myself for medicaid–because my COBRA-Blue Cross Blue Shield is running out of its 18 month eligibility period on July 31!June 9, 2010 at 2:52 pm #38598rick-kampMember
Good thread and good list. After my most recent trip to Mayo and finding out that my local radiologists SUCK I have a new one to add:
*Radiologists who simply MISS a 4+cm tumor on CT scan staring them in the face. Seriously, did you see it and forget about it or something? This is my life you are working with here.
RickJune 9, 2010 at 11:26 am #38597devoncatMember
You nailed it.
And let me state again how much I hate hemorrhoids. I cant say it enough.
KrisJune 9, 2010 at 2:05 am #38596beth-oMember
oh my goodness. I think this might have been one of the best experiences I have had since this dam diagnosis! I am so glad to tell everyone of you that I hate just about everything on this list so far…
farting burping, constipation and just never knowing what my system will do day to day
the scar, the roll of skin that now hangs on my abdomen because I spent 10 months after my surgery bigger than I ever was pregnant.
The numbness, if it wasn’t bad enough in my abdomen I got a pleural effusion and had to have surgery on my chest so now I cant feel my right nipple!
I HATE HATE HATE HATE HATE being stuck in the stinky, dirty, no sleep to be found, bad food ridden hospital 20 miles from my kids and my bed and my food and my husband and my life.
I hate not being able to work. sounds funny but I miss giving back.
xeloda, well if it works I’ll put up with anything but man I hated how it made me feel, and how it tasted and smelled….
no energy, feeling short tempered with the two people I want so desperately to raise….I hate thinking they will remember a mom who was “sick” because I was always so strong, so fit, never afraid to try something new and push myself as far as I could.
I hate not being able to have sex whenever I want because I don’t feel well, or I stink!
Drains, pain, nausea, bills, anxiety attacks, insomnia, not being able to enjoy a book because I have no attention span or memory…
and the list goes on
But I LOVE my life and I (and I am 100% sure each and everyone of you) would will and do put up with it all because we just can’t imagine throwing in the towel and giving it up. We must go on, we must shout, we must use every last drop of energy we have to let the world know this crappy ass disease is a killer and takes vibrant healthy worthwhile people from this journey everyday and I HATE there there doesn’t seem to be much interest getting research going for us all.
Chin up, pull yourself together and sojurn on….June 8, 2010 at 4:13 am #38595
Oh, Kris!!!!!! What can I say that hasn’t already been said. This is certainly a wonderful thread and a great release!……Here goes,
What I HATE about this cancer is,
…the night sweats (or first hot then cold then hot..)
…numb fingers and toes – sleeping with a pillow under my knees so my
heels don’t touch the bed and another one to prop up the sheet so
it doesn’t touch my toes
…the waiting for results of anything; tests, chemo, doctors to decide
next steps, appointments, you name it. Nothing that you want
…not only the farting, but the burping too. Sometimes I think I could win a
burping contest. (my son thinks it’s funny!)
…the power port flush “taste” (that’s the heparin), and having to have it
flushed even when you don’t have chemo treatments.
…my power port in general for being where it is and so noticeable (some of
the looks I get from people who don’t know what it is, making me
feel like I have to cover it up all the time). I should just tell them
I’m an alien and that’s how I get my air.
…when my 5 year old asks to “touch my bumps” referring to the power port,
and he asks when it will be “gone”. It’s hard to tell a child so
young about these things.
…although my surgical scar across my middle is fading (all wavy 12″ of it), it
is still very lumpy.
…my weight gain both times during chemo treatments.
…that my middle is STILL numb from surgery after a year. I even bump into
things and don’t realize it.
…that cancer has aged me so much in such a short time.
…that most of all, that this cancer has cheated my family out of the benefit
of ME. Cheated my son out of his mother, my husband out of his
wife, my mother out of her only daughter, and my brothers our of
their pesky older sister. I’m still not done yet here. I still have
many, many more years of picking on them to do.
…being so tired during chemo treatments that I can’t do things with my son
like I’d like to. (He has such patience with me though.)
…the feeling of self-pity I had thinking I was so alone in this cancer, until I
found this website.
It was wonderful to read everyone’s posts. What humor we have in a lot of you. We all give each other one thing most cannot….the link we have through CC gives us each understanding and this thread shows it.
Thanks again Kris! (I get the pregnancy look thing too. It’s like all my
weight went to my front middle, like I’m
pregnant. Not 9-months, but I still feel
pregnant. I’m with you on that Tommy – tell your
Linda Z.June 6, 2010 at 9:59 pm #38594gavinModerator
I hate how much the fatigue affected my dad and how that started to dominate his day to day life.
And I know that he hated the nausea, hated it with a passion.
GavinJune 6, 2010 at 2:46 am #38593mlepp0416Member
The first time I saw this post, I didn’t post what I or Tom hated about this cancer because I thought it would be too negative. But now that I have seen others posts….
I hate that this cancer has taken my once vibrant and fun loving robust husband and turned him into the ‘thin’ man who is no longer capable of eating the food that he loves, no longer able to garden like he used to be able to do.
I hate medical bills and knowing that starting July 1st we have to meet a $3,000 deductible and then another $3,000 out of pocket, but I’m also grateful that we do have health insurance.
I hate the external drain bag that collects the bile and I hate flushing it every day and changing the bandage. I hate the hole in Tom’s side where the tube goes into the liver. I hate the stitches that hold the tube in place.
I hate 4×4 gauze pads, Tegafilm, 10cc flushes and bile in general. Bile should be something that we aren’t aware of and stay where it belongs.
I hate knowing that Tom and I will not grow old together because at some time this cancer will take him away from me, from our children, our grandchildren. I hate it that his little namesake Tommy will probably not grow up having Grandpa teach him how to fish, grow flowers, talk about life in general. But I love that my daughter named her firstborn after her stepfather!
Tom hates: CC, external drain, ERCP’s, Flushing of the drain and bandage changes. He hates that he looks 20 years older than he is. He hates that he can’t wear jeans very often becuase the seams wear on his tail bone (He has no meat on his butt)
Tom hates the thought that after only 9 short years of being married to me that he may be taken away long before his time.
He hates that now that he has reunited with his first born daughter, he will have to leave her again because of CC.
He hates knowing that he has a death sentence because of CC but understands that we all have to die (and pay taxes!) but would rather die not knowing it was coming.
He hates the stares that he gets from people when we go to the store. He hates that shocked look on friends faces when they see him if they haven’t seem him in awhile.
He hates not being able to sleep on his left side.
He hates feeling sick.
There I did it!
Margaret and TomJune 4, 2010 at 7:24 pm #38592lainyMember
Ouch….ugh..ick…oof…oh krap!!!!!!!!!!! Just wanted to help you out with words!June 4, 2010 at 7:07 pm #38591devoncatMember
Hemorrhoids. ‘nough said.June 4, 2010 at 1:24 pm #38590lalupesParticipant
Oh, & p.s.: She wants, wants, wants to eat a curry but it burns her mouthJune 4, 2010 at 11:13 am #38589lalupesParticipant
Oh Kris – thank you for starting this … & thanks to the rest of you for adding to it. My sister is feeling so low at the moment but she laughed when I read these lists to her & asked me to add some for her, too:
She HATES …
… the constant sweating
… the farting
… the not knowing from one moment to the next how she’ll feel
… the tiredness
… the idea that, as a young person, she may no longer have the life she thought she’d have
Most of all she HATES feeling so alone with it – but thanks to you, that feeling of aloneness disappeared for a while.
Love you all
Julia xxJune 1, 2010 at 9:40 pm #38588ladybug02142004Member
I can speak as a caregiver, and I can speak for Dave. These are the things that I know he hates.
He hates that he has a horrible looking scar on his stomach that will never go away.
He hates that he looks like he has a massive watermelon under his shirt due to the large Hernia.
He hates that when his power port is flushed he gets a horrible taste in his mouth.
He hates the nausea, and that certain smells bother him that never did before.
He hates that he can no longer carry his little girl to bed.
He hates that he is not as strong as he used to be, and can’t do all the things he was able to, just 2 years ago.
He hates that horrible feeling that we all get the night before the scan.
I think this was a good thread, a way for everyone to vent, and to realize that it is ok to be frustrated, and it helps so much to tell others about it, and to know that they have the same feelings.
If I have not said this before…you all are wonderful people, and you give others the one thing that we all need. A place to go to and look for answers, hope, love, and encouragement!
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