A what is it riddle "It only hurts when its goes around the corners" and good news

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited March 2014 in Colorectal Cancer #1
A what is it riddle "It only hurts when its goes around corners"

I heard this comment in our very first support group.
We had our first actual person to person colorectal support group meeting last night.
I booked a table for 21 we had a total of 3 including me.
We had a good range range cancers to start with. A t2 t3 and a t4.

All very different treatments and experiences. We talked for hours.
We had a colorectal nurse who works for bowel cancer australia.
I told her about the great people , advice and care on this site.
We had a really experienced support group facilitator ( she been really caring for
her group general cancer support group for about 15 years )
I joined her group to see what a general purpose cancer support group is about.
It was really worthwhile , they were funny and sad.
"never see a need without doing something about it" kind of motivated me.

Its pathetic in a city of 7 million and maybe 80 new bowel cases a week we don't have a colorectal support group that serves the bulk of the city.

I could keep on writing but my son wants me to scratch his back and read his story
called "emergency"
He said "read it to me please" so I have to go.

Comments

  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #2
    Support group
    Hi Pete,

    We have a support group at my cancer center which meets once a month with lunch provided. I have never been but I keep saying I might go some day. Several weeks after my colon resection I received a letter in the mail talking about my "breast cancer" and inviting me to the support group.I was offended at the time that someone didn't take the time to get my particular cancer right and that was typical of my whole hospital experience so I declined.Maybe I was just being petty but I have noticed that anytime I tell someone that I had surgery for cancer they look straight to my chest area ( which might be better than them glancing at my butt, huh?)

    Glad you had a good experience with your support group. It really sounds like it was interesting and worthwhile.

    Your son sounds like pure joy! Keep on scratching that baby's back and reading to him. Nothing like children to get our priorities right.

    Best wishes,
    -Pat
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #3
    wish i had
    a support group like that.i live in a small town and the only thing they support as far as cancer goes is breast cancer.it is a shame people cant be more aware of so many people getting colorectal cancer these days.if you learn anything in your group pass it on....Godbless...johnnybegood
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #4
    The answer is "A colonoscopy while awake"
    For confidentiality reason I cannot name my new friends in our very small support group.
    I am T4, my best and founding real life actually hugable support buddy is T3.
    T4 and T3 met by accident at the same school to buy uniforms for our kids starting school next year.

    Our first conversation went something like

    She asked how I was going ? I said " I got some butt issues"
    She said "me too"
    I said "mines bigger than yours" and she just smiled.

    We have been scheming up ways to beat our bowel cancers ever since.
    The ironies don't stop their. So I wanted someone real to talk to. Another patient
    about this crazy problem in the beginning. The pain of chemoradiation was pretty tough to
    suffer alone. The ONC nurses don't just offer the same been there type of support I needed.
    Out of the blue a mum who has the same aged boy in my daughters year had the same cancer, the same location and was diagnosed with 7 days of each other. Our cancer council has a matching service that did not work for me or many others.

    Back to the riddle. T2 explained that to save money in the UK screening colonoscopies they leave you awake. You can watch your own private Rectal colon show with commentary from nurses and gastro. It sounded funny at the time. Maybe its lost something in the translation into US speak. His gestures and facial expressions were amazing. In Aussie they put us to sleep which I think is more civilised.

    In sydney there are heaps of breast and prostrate cancer support groups and nothing accessible to bowel cancer. I am jealous.
    The demands of starting, organising and support group are beyond me.
    I want to help, kick the ball off, attend. I am hopelessly organised so I am trying and praying to find someone keen to run our group. I know it will help patients and give us a way of making prevention count.

    We are meeting Bi monthly at present and I will post any good jokes or news.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    pete43lost_at_sea said:

    The answer is "A colonoscopy while awake"
    For confidentiality reason I cannot name my new friends in our very small support group.
    I am T4, my best and founding real life actually hugable support buddy is T3.
    T4 and T3 met by accident at the same school to buy uniforms for our kids starting school next year.

    Our first conversation went something like

    She asked how I was going ? I said " I got some butt issues"
    She said "me too"
    I said "mines bigger than yours" and she just smiled.

    We have been scheming up ways to beat our bowel cancers ever since.
    The ironies don't stop their. So I wanted someone real to talk to. Another patient
    about this crazy problem in the beginning. The pain of chemoradiation was pretty tough to
    suffer alone. The ONC nurses don't just offer the same been there type of support I needed.
    Out of the blue a mum who has the same aged boy in my daughters year had the same cancer, the same location and was diagnosed with 7 days of each other. Our cancer council has a matching service that did not work for me or many others.

    Back to the riddle. T2 explained that to save money in the UK screening colonoscopies they leave you awake. You can watch your own private Rectal colon show with commentary from nurses and gastro. It sounded funny at the time. Maybe its lost something in the translation into US speak. His gestures and facial expressions were amazing. In Aussie they put us to sleep which I think is more civilised.

    In sydney there are heaps of breast and prostrate cancer support groups and nothing accessible to bowel cancer. I am jealous.
    The demands of starting, organising and support group are beyond me.
    I want to help, kick the ball off, attend. I am hopelessly organised so I am trying and praying to find someone keen to run our group. I know it will help patients and give us a way of making prevention count.

    We are meeting Bi monthly at present and I will post any good jokes or news.

    Had a sygmoidoscopy while 'awake'....a guided tour!
    But, yeah, my colonoscopy was actually with me 'awake'...but sedated...and then I had the stuff that makes you forget....I forget what it is....

    My first one was so painful that I cried out so much and so loud, that the patient care team came to investigate...thought there was patient abuse...which there was, but it was necessary to check the area beyond the 2" tumor...(my doc was so pissed!).

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    Pete, you have your answer.....
    If you have asked yourself "How can I give back?"

    My answer was to become a grass-roots lobbyist for the American Cancer Society. Bugged my political guys for 2 years about cancer screening and treatment, especially colon. Retired from that, and sat on the board of a group to raise California awareness to colorectal cancer.

    Hugs, Kathi
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #7
    pete43lost_at_sea said:

    The answer is "A colonoscopy while awake"
    For confidentiality reason I cannot name my new friends in our very small support group.
    I am T4, my best and founding real life actually hugable support buddy is T3.
    T4 and T3 met by accident at the same school to buy uniforms for our kids starting school next year.

    Our first conversation went something like

    She asked how I was going ? I said " I got some butt issues"
    She said "me too"
    I said "mines bigger than yours" and she just smiled.

    We have been scheming up ways to beat our bowel cancers ever since.
    The ironies don't stop their. So I wanted someone real to talk to. Another patient
    about this crazy problem in the beginning. The pain of chemoradiation was pretty tough to
    suffer alone. The ONC nurses don't just offer the same been there type of support I needed.
    Out of the blue a mum who has the same aged boy in my daughters year had the same cancer, the same location and was diagnosed with 7 days of each other. Our cancer council has a matching service that did not work for me or many others.

    Back to the riddle. T2 explained that to save money in the UK screening colonoscopies they leave you awake. You can watch your own private Rectal colon show with commentary from nurses and gastro. It sounded funny at the time. Maybe its lost something in the translation into US speak. His gestures and facial expressions were amazing. In Aussie they put us to sleep which I think is more civilised.

    In sydney there are heaps of breast and prostrate cancer support groups and nothing accessible to bowel cancer. I am jealous.
    The demands of starting, organising and support group are beyond me.
    I want to help, kick the ball off, attend. I am hopelessly organised so I am trying and praying to find someone keen to run our group. I know it will help patients and give us a way of making prevention count.

    We are meeting Bi monthly at present and I will post any good jokes or news.

    A true saying
    I requested no sedation at my last colonoscopy and was lucky enough to have a gastro who understood my reasoning. Everything went smoothly until they got to the 1st curve. I am happy to say that a small dose of Demerol cured the hurt and I was Versed free( amnesiac sedation....you still hurt but you don't remember it )The rest of the curves did not hurt and I was awake and aware the whole time and ready to go home as soon as it was over....which gets back to my reasoning for no sedation. My 1st gastro missed two tumors 9/24/08. On 10/15/09 I am dx'd with a fist sized cancerous tumor in my colon. I wanted to stay awake and in control with the 2nd gastro ( you know, make sure he didn't leave me in a sedated state and he go out on a coffee break or maybe go check his e-mail...) and he took the opportunity to teach and I took the opportunity to ask questions. Worked out well and was actually very civilized:)Will do it that way everytime if I have any say about it.

    Take care Pete!

    -Pat
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #8
    pete43lost_at_sea said:

    The answer is "A colonoscopy while awake"
    For confidentiality reason I cannot name my new friends in our very small support group.
    I am T4, my best and founding real life actually hugable support buddy is T3.
    T4 and T3 met by accident at the same school to buy uniforms for our kids starting school next year.

    Our first conversation went something like

    She asked how I was going ? I said " I got some butt issues"
    She said "me too"
    I said "mines bigger than yours" and she just smiled.

    We have been scheming up ways to beat our bowel cancers ever since.
    The ironies don't stop their. So I wanted someone real to talk to. Another patient
    about this crazy problem in the beginning. The pain of chemoradiation was pretty tough to
    suffer alone. The ONC nurses don't just offer the same been there type of support I needed.
    Out of the blue a mum who has the same aged boy in my daughters year had the same cancer, the same location and was diagnosed with 7 days of each other. Our cancer council has a matching service that did not work for me or many others.

    Back to the riddle. T2 explained that to save money in the UK screening colonoscopies they leave you awake. You can watch your own private Rectal colon show with commentary from nurses and gastro. It sounded funny at the time. Maybe its lost something in the translation into US speak. His gestures and facial expressions were amazing. In Aussie they put us to sleep which I think is more civilised.

    In sydney there are heaps of breast and prostrate cancer support groups and nothing accessible to bowel cancer. I am jealous.
    The demands of starting, organising and support group are beyond me.
    I want to help, kick the ball off, attend. I am hopelessly organised so I am trying and praying to find someone keen to run our group. I know it will help patients and give us a way of making prevention count.

    We are meeting Bi monthly at present and I will post any good jokes or news.

    Pete
    It sounds like you have gotten into something really good. I have a feeling your group will grow with time.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #9
    KathiM said:

    Pete, you have your answer.....
    If you have asked yourself "How can I give back?"

    My answer was to become a grass-roots lobbyist for the American Cancer Society. Bugged my political guys for 2 years about cancer screening and treatment, especially colon. Retired from that, and sat on the board of a group to raise California awareness to colorectal cancer.

    Hugs, Kathi

    thanks for kind thoughts. a great idea for new post
    lobbying our politicians would be hard work but possible.

    grass roots is the phrase i love. i am working on little project related to my nbc story for utube. just look up nbc peter trayhurn for my 6 min of fleeting fame and my warning.

    just telling our stories is enough ,
    the face to face story then warning is most effective.

    so many guys don't communicate about this stuff.

    i went to this 9th birthday this arvo and mentioned my cancer.
    this lovelly mum was puffing like a chimney, but i did not tell her about val just dieing of lung cancer. who wants to spoil a party.

    i am pretty active and open and do lots of one on one. every single day i am hearing
    about someone who knows or has bowel cancer. it an epidemic here. I eventually
    tell most to get a colonoscopy. I feel a bit push but know they probably will not get message us less i share my story. i know in my heart one on one is by far the most effective method of making a prevention message.

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