my SYDNEY colorectal support group dream canned today. if at first you don't succeed give up.

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pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
in Colorectal Cancer #1
today i advised a few loyal supporters that i have given up on th bowel cancer support group i had started in my area of sydney 6 months ago. i could find no one else to run it.
i could not find a good venue.
it breaks my heart to think of the lack of emotional support most crc get from dx onwards.

the group needed someone to really support it and get it off the ground who had more resources than i do. i was dissappointed in lack of support from the cancer council and bowel cancer australia and the hospitals. i still think going to a group should be an option for every crc patient if they so desire. well its not an option for most as the one and only group in sydney is at the northern end of the city. it was the only group within 1 hours drive. i got to their meetings which is great.

i also did not want setting up the group to get in the way of my treatment/recovery and family time.

at present with my reconnection issues i could not even attend myself.

its a real need that i hope one day gets addressed.
i could not find new people to run it, and people to attend.

i love and appreciate our forum, but face to face and real hugs are good as well.

hugs,
pete

ps does anyone goto crc support group? would you if one existed close by to you?

Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    #2
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    Pete
    I am sorry that your efforts to get a group started did not work out. So many not familiar with this desease evidently cannot comprehend the devastation it causes. I know we've had this discussion before, but it seems the emphasis is on other cancers, not CRC. I am eternally grateful to have found this group with JBG as she has no nearby support groups for a face to face and real hugs. I'm sure many in rural areas are in the same boat.

    Hope your "loo" problems resolve themselves soon.

    Luv,

    Wolfen
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
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    NO
    This is my support group. They do have one available (not just for crc but for everything)15 minutes away, but I don't want to grow friendly and see anyone that I would have a weekly face to face pass away, because you also have pancreatic cancer, breast cancer, you name it, one for all group, so I've never have gone and won't.
    Winter Marie
  • Unknown
    Unknown
    #4
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    herdizziness said:

    NO
    This is my support group. They do have one available (not just for crc but for everything)15 minutes away, but I don't want to grow friendly and see anyone that I would have a weekly face to face pass away, because you also have pancreatic cancer, breast cancer, you name it, one for all group, so I've never have gone and won't.
    Winter Marie

    This comment has been removed by the Moderator
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #5
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    unknown said:

    This comment has been removed by the Moderator

    sorry pete
    that your little group did not succeed.i remember when you first posted that you were trying to get a group going.i dont know why people dont understand about crc and how devastating it can be....Godbless...johnnybegood
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #6
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    Pete
    I am sorry the group ended. Maybe timing is off +in ~ 6 months you could try again.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #7
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    wolfen said:

    Pete
    I am sorry that your efforts to get a group started did not work out. So many not familiar with this desease evidently cannot comprehend the devastation it causes. I know we've had this discussion before, but it seems the emphasis is on other cancers, not CRC. I am eternally grateful to have found this group with JBG as she has no nearby support groups for a face to face and real hugs. I'm sure many in rural areas are in the same boat.

    Hope your "loo" problems resolve themselves soon.

    Luv,

    Wolfen

    hi wolfen
    the loo issues are better for the moment, got a great nights sleep. which i needed.

    i too am so grateful to csn for this board.

    the groups are not an option in rural and we are here, but in big cities they are an option but don't exist.

    one day i hope.


    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #8
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    herdizziness said:

    NO
    This is my support group. They do have one available (not just for crc but for everything)15 minutes away, but I don't want to grow friendly and see anyone that I would have a weekly face to face pass away, because you also have pancreatic cancer, breast cancer, you name it, one for all group, so I've never have gone and won't.
    Winter Marie

    dear winter marie
    lovelly to hear from you and i had the same concerns.

    anyway i joined the local general group here 6 months ago. a few crc in the group. its sad and beautiful knowing people who are about to pass. but this one lady makes you laugh and smile and wants everyone to where yellow at her funeral. i will.

    my resolve to fight on has been strengthen by my membership of the group.

    csn colorectal is my main group for care and knowledge, but i need really hugs and chats over lunch afterwards and i am in sydney and the usa is so big. each group has its benefits and strengths i feel.

    my general group got me into the relay for life which i loved.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #9
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    johnnybegood said:

    sorry pete
    that your little group did not succeed.i remember when you first posted that you were trying to get a group going.i dont know why people dont understand about crc and how devastating it can be....Godbless...johnnybegood

    hi johnnybegood
    i tried and one day i know it will happen. at least we have our great group with its strengths and weaknesses.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #10
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    AnneCan said:

    Pete
    I am sorry the group ended. Maybe timing is off +in ~ 6 months you could try again.

    hi anne
    maybe, i love the idea of hope.
    hugs,
    pete
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #11
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    pete43lost_at_sea said:

    hi anne
    maybe, i love the idea of hope.
    hugs,
    pete

    Pete.Sorry it didn't take off...let me ask you this....
    are you putting your head in the sand because of this first loss ? Its not like you to surrender so easily.....I do understand that we all have a lot on our plate and sometimes not enough resources to do everything we would like....Good luck in your endeavor though...buzz
  • dorookie
    dorookie Member Posts: 1,731 Member
    #12
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    I would if I could find one
    I have been to cancer support groups and it really does help, in my opinion.

    HUGS
    Beth
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
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    Buzzard said:

    Pete.Sorry it didn't take off...let me ask you this....
    are you putting your head in the sand because of this first loss ? Its not like you to surrender so easily.....I do understand that we all have a lot on our plate and sometimes not enough resources to do everything we would like....Good luck in your endeavor though...buzz

    its tricky mate
    the juggle life, family, cancer, treatment. all these balls in the air.

    where they fall only one knows. not me.

    so maybe i pulled my head out of the sand as much as having it in it. and opened my eyes.

    i have many tears in my eyes mate, so much death around me, touching me almost everyday.

    like a beautiful swan angel named julie having her last breathes with her ellyot, of my aunty vals birthday yesterday ( she died lung cancer nov10) , my little keith 5 misses her so much. today i visited my good friend athol with terminal lung cancer at home. today i attended the only crc support group in sydney. many new confused and worried stage 4s. i tell them all to come to csn here, noone does. we have got poor crowe and his kids. it breaks my heart.

    in my heart i am so disappointed that my closest crc friends here in sydney are not doing any of my protocols. not the diet, the supplements, the tea, the meditation. i don't let them know. i realise how extreme i have become.

    i have my crystal crc ball. i see many futures for myself, for all of us. i still believe god gives us free will to influence our fate and i am trying. ( i know some say very trying ).

    i am so confident in the anticancer message for myself and the many supports i have but i cannot accept the responsibility of persauding others. the passion for our treatments has to come from within. i respect everyones right to choose their treatment.

    i would rather dedicate myself to my health ( exercise, diet, supplements ,tea, meditation ) and really care for the family. your trouble also touched me deeply. tonight i read keith and mel a few pages from a uni biochemistry text i am studying. they were facinated. i like the fact my 5 year knows about ATOMs and atomic structure and that i do as well.

    i am just so sorry that all the new crc's around this planet don't get the best treatment. i believe in the synergy of support groups, of caring and sharing emotions and knowledge and experience.

    the lack of hospital based support groups shows the weakness of our treatment systems.

    realising my eyes are bigger than my stomach in the sense of what i can realistically achieve and balancing that with what i owe my wife and kids for all the support and the fact that someone more unbiased would be a better group leader resulted in the decision.

    in my last meeting the only attendees were my two kids.

    hugs and prayers,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #14
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    dorookie said:

    I would if I could find one
    I have been to cancer support groups and it really does help, in my opinion.

    HUGS
    Beth

    thanks beth
    i hope you find a good one.

    hugs,
    pete
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #15
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    pete43lost_at_sea said:

    thanks beth
    i hope you find a good one.

    hugs,
    pete

    Pete.....I find that
    sometimes when we try and fail we stop, but there are many that try and fail and try and fail and try and fail again, but the thing is, if no one tries then no one will ever succeed, because failure is a learning curve that tends to make us try harder to succeed, leads us in a different direction in answers to the same issues. If we try and try and try and fail and fail and fail, its not because we can;t get it done, its simply that someone else needs to take the reigns. The cancer support group may not be the gift that you are suppose to create to offer up for others, it may be the spokesman for an alternative method, it may be the teacher and mentor of such intricate and delicate things like...our children. I can see how enthralled and big eyed you get when herbs, TCM, and alternates are brought up. It gives us all a rush in a sense that our lives mean more than just "life", we are giving the masses what we think will help, and when it comes to pass, just like you, all I really want is to be remembered...and to remember what life was really about and how best I can serve my man upstairs, and my children, and keep both of them at the top of my list of necessities...Everything else is on the lower shelves...
    Cheer up, its not that you failed in your move for a support group, its that they are not ready for it, and you found the one thing thats important that needs more of your support than any group could ever need...Your kids...Yep, I found mine as well...Thats where it all boils down to.....we are best when we are fathers to our children....Now smile and know that you succeeded, maybe not in the formation of a group, but finding a group much more needy for your expertise than any other...your youngins'........be blessed, buzz
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #16
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    Buzzard said:

    Pete.....I find that
    sometimes when we try and fail we stop, but there are many that try and fail and try and fail and try and fail again, but the thing is, if no one tries then no one will ever succeed, because failure is a learning curve that tends to make us try harder to succeed, leads us in a different direction in answers to the same issues. If we try and try and try and fail and fail and fail, its not because we can;t get it done, its simply that someone else needs to take the reigns. The cancer support group may not be the gift that you are suppose to create to offer up for others, it may be the spokesman for an alternative method, it may be the teacher and mentor of such intricate and delicate things like...our children. I can see how enthralled and big eyed you get when herbs, TCM, and alternates are brought up. It gives us all a rush in a sense that our lives mean more than just "life", we are giving the masses what we think will help, and when it comes to pass, just like you, all I really want is to be remembered...and to remember what life was really about and how best I can serve my man upstairs, and my children, and keep both of them at the top of my list of necessities...Everything else is on the lower shelves...
    Cheer up, its not that you failed in your move for a support group, its that they are not ready for it, and you found the one thing thats important that needs more of your support than any group could ever need...Your kids...Yep, I found mine as well...Thats where it all boils down to.....we are best when we are fathers to our children....Now smile and know that you succeeded, maybe not in the formation of a group, but finding a group much more needy for your expertise than any other...your youngins'........be blessed, buzz

    thanks buzz
    kids are the best medicine.
    hugs,
    pete
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #17
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    Sorry this didn't work out
    I'm sorry your group didn't work out right now, but only you know what is best for you right now. Maybe later on if you feel stronger, you will have more time to devote to a group and/or searching for someone else that is willing to lead it.

    We have a great support group in the Twin Cities, MN, called C.A.R.S. (Colon and Rectal Support). It is for patients with colorectal cancer and caregivers. My colon cancer nurse navigator and a nurse practitioner from the colorectal surgeons co-lead our group. We have a speaker, then snack time, then group sharing time. We meet the 3rd Thursday of each month from 5:30-7PM. Anyone in the area is welcome to join us. The meetings are at MOHPA (MN Oncology) in Edina, next to Southdale Hospital.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #18
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    Kathryn_in_MN said:

    Sorry this didn't work out
    I'm sorry your group didn't work out right now, but only you know what is best for you right now. Maybe later on if you feel stronger, you will have more time to devote to a group and/or searching for someone else that is willing to lead it.

    We have a great support group in the Twin Cities, MN, called C.A.R.S. (Colon and Rectal Support). It is for patients with colorectal cancer and caregivers. My colon cancer nurse navigator and a nurse practitioner from the colorectal surgeons co-lead our group. We have a speaker, then snack time, then group sharing time. We meet the 3rd Thursday of each month from 5:30-7PM. Anyone in the area is welcome to join us. The meetings are at MOHPA (MN Oncology) in Edina, next to Southdale Hospital.

    how great you have cars
    hi kathryn,

    i still hope in a few more groups in sydney, so glad yours sounds so good.

    hugs,
    pete

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