PPC board

Tina Brown
Tina Brown Member Posts: 1,036 Member
in Ovarian Cancer #1
Hi everyone

I have emailed CSN with a request for them to develop a PPC board. Whilst I have enjoyed talking to all of the ladies on this Ovarian Cancer board, I would like a specific PPC board set up as there are differences between the 2 cancers.

So this is just to alert anyone who may be interested in lobbying CSN to encourage them to create one.

Whatever happens I will continue to come on these boards as I feel I have lots of friends on here and I like to continue to chat to you all and find out how you are all getting on.

Take care, and lets kee pour fingers crossed that CSN creates a PPC board.

Tina xxxxx
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Comments

  • stella65
    stella65 Member Posts: 152
    #2
    Fingers crossed
    Well done Tina, I would be very interested in this too, I hope they respond to your request X
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #3
    Me too!
    Hi Tina, I wrote quite a long letter to the admin not long ago, being concerned about a matter and at the end included my own wish for a separate PPC board.

    I'm totally with you on that one!

    AussieMaddie
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #4
    AussieMaddie said:

    Me too!
    Hi Tina, I wrote quite a long letter to the admin not long ago, being concerned about a matter and at the end included my own wish for a separate PPC board.

    I'm totally with you on that one!

    AussieMaddie

    Nice one Tina, I love
    Nice one Tina, I love talking to the ladies on here also , but there is a difference between the two cancers, I will also email them , it would be nice for it to be recognised as different cancers. xxxx liz xxxxxx
  • eward
    eward Member Posts: 210
    #5
    support
    I will support you with this, Tina!
    Keep me posted on what I can do to support this effort.
    Eileen
  • Tasgirl
    Tasgirl Member Posts: 85
    #6
    Hi Tina
    I have just sent a
    Hi Tina
    I have just sent a request as well
    Jenny
  • Millie2011
    Millie2011 Member Posts: 28
    #7
    Tasgirl said:

    Hi Tina
    I have just sent a
    Hi Tina
    I have just sent a request as well
    Jenny

    My supprt
    Hi Tina!

    Is upport this too!Thank you for doing this!
    Love Millie
  • lulu1010
    lulu1010 Member Posts: 367
    #8
    Millie2011 said:

    My supprt
    Hi Tina!

    Is upport this too!Thank you for doing this!
    Love Millie

    Thanks to all of you!
    I certainly support this also. I know it is pretty much one and the same as ovarian cancer but there are quite a few of us out here who really gain by hearing from others with our particular situation. Thanks to all of you for trying.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #9
    lulu1010 said:

    Thanks to all of you!
    I certainly support this also. I know it is pretty much one and the same as ovarian cancer but there are quite a few of us out here who really gain by hearing from others with our particular situation. Thanks to all of you for trying.

    Update
    I have not heard anything back yet from the admin. I will give it another few days and then send another email. Thanks for all of your support. It means a lot to me to find such wonderful caring ladies. Its just such a shame cancer is the thing to have brought us all together.
    Much Love Tina xx
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #10
    Tina Brown said:

    Update
    I have not heard anything back yet from the admin. I will give it another few days and then send another email. Thanks for all of your support. It means a lot to me to find such wonderful caring ladies. Its just such a shame cancer is the thing to have brought us all together.
    Much Love Tina xx

    I will also send one
    Right now.
    Hoping we get our board,
    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #11
    Tina Brown said:

    Update
    I have not heard anything back yet from the admin. I will give it another few days and then send another email. Thanks for all of your support. It means a lot to me to find such wonderful caring ladies. Its just such a shame cancer is the thing to have brought us all together.
    Much Love Tina xx

    It'sdone
    Taking advantage of my duplicated post, am editing it to say that I have sent that Contact form to admin just now.

    The more that support us the better!
  • Best Friend
    Best Friend Member Posts: 222
    #12
    Tina Brown said:

    Update
    I have not heard anything back yet from the admin. I will give it another few days and then send another email. Thanks for all of your support. It means a lot to me to find such wonderful caring ladies. Its just such a shame cancer is the thing to have brought us all together.
    Much Love Tina xx

    Hey
    This is a great idea because there are quite a few people on the stomach cancer board that belonged on the ovarian board because of the cancers origin. Even quite a few males. I think it isn't quite fair to them that they should have to go to a sight that is all women. HELLO, men don't have ovaries.
  • MissBee
    MissBee Member Posts: 8
    #13
    Best Friend said:

    Hey
    This is a great idea because there are quite a few people on the stomach cancer board that belonged on the ovarian board because of the cancers origin. Even quite a few males. I think it isn't quite fair to them that they should have to go to a sight that is all women. HELLO, men don't have ovaries.

    Support
    I am a ppc survivor and wholeheartedly support a ppc board. Hope you hear something soon.

    Bettye
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #14
    MissBee said:

    Support
    I am a ppc survivor and wholeheartedly support a ppc board. Hope you hear something soon.

    Bettye

    Up-date
    As of today I have recieve no response from the administration team at csn. Therefore I have sent a second message requesting a PPC meesaging board be created for us.

    If and when I receive a response I will let you all know.

    Love Tina xxxxxx
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #15
    Tina Brown said:

    Up-date
    As of today I have recieve no response from the administration team at csn. Therefore I have sent a second message requesting a PPC meesaging board be created for us.

    If and when I receive a response I will let you all know.

    Love Tina xxxxxx

    own board...
    Hi Tina...
    Have sent an email but haven't got a reply either. Do you think they have someone looking at the mails at all? Totally on this one with you too....

    Love

    Sue
  • westie66
    westie66 Member Posts: 642
    #16
    wanttogetwellsoon said:

    own board...
    Hi Tina...
    Have sent an email but haven't got a reply either. Do you think they have someone looking at the mails at all? Totally on this one with you too....

    Love

    Sue

    Primary and Secondary Peritoneal Cancer New Discussion Board
    Hi all: See my response from Greta fairly close to the top of the Rare and Other Cancer discussion board. Note that I included secondary because many of us have peritoneal cancer from other sources for which treatment is again different from ovarian cancer and primary peritoneal cancer (I see someone with mets from stomach cancer to the peritoneum above). Posted today. Let me know what you think or contact Greta directly. Hope we're lucky!
    Cheryl
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #17
    westie66 said:

    Primary and Secondary Peritoneal Cancer New Discussion Board
    Hi all: See my response from Greta fairly close to the top of the Rare and Other Cancer discussion board. Note that I included secondary because many of us have peritoneal cancer from other sources for which treatment is again different from ovarian cancer and primary peritoneal cancer (I see someone with mets from stomach cancer to the peritoneum above). Posted today. Let me know what you think or contact Greta directly. Hope we're lucky!
    Cheryl

    Great idea westie!
    Perioneal Cancer, Primary and secondary.

    I've noticed that on so many other boards has cancer started from somewhere else and then it spreads to ther peritoneum. Where do those people go to ask and share?

    I wanted you all to know that I've just sent my most pleading letter so far to the CSN to have a Peritoneal Board included - one to include both Primary as well as secondary, since both will probabkly find themselves treated the same way, with the same kinds of problems arising from those.

    We can only keep them on their toes reading our letters if not replying to them :/

    I can only imagine that the powers overseeing these boards are run off their feet.

    My love to all,

    AussieMaddie.

    xxxooo
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #18
    AussieMaddie said:

    Great idea westie!
    Perioneal Cancer, Primary and secondary.

    I've noticed that on so many other boards has cancer started from somewhere else and then it spreads to ther peritoneum. Where do those people go to ask and share?

    I wanted you all to know that I've just sent my most pleading letter so far to the CSN to have a Peritoneal Board included - one to include both Primary as well as secondary, since both will probabkly find themselves treated the same way, with the same kinds of problems arising from those.

    We can only keep them on their toes reading our letters if not replying to them :/

    I can only imagine that the powers overseeing these boards are run off their feet.

    My love to all,

    AussieMaddie.

    xxxooo

    Thank-you
    Thanks to everyone who has tried to petition CSN for the Peritoneal Board. I think a Peritoneal Board would be a ggod name for it and people with Primary & Secondary could post there.

    I have now sent 2 messages and I don't know what else to do? I have even looked to see if I can just "create" my own but I don't think that would work as everyone would be doing it !!!!!!!

    Keep on lobbying and maybe one day they may just respond.
    Love Tina xx
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #19
    Tina Brown said:

    Thank-you
    Thanks to everyone who has tried to petition CSN for the Peritoneal Board. I think a Peritoneal Board would be a ggod name for it and people with Primary & Secondary could post there.

    I have now sent 2 messages and I don't know what else to do? I have even looked to see if I can just "create" my own but I don't think that would work as everyone would be doing it !!!!!!!

    Keep on lobbying and maybe one day they may just respond.
    Love Tina xx

    CSN not responding to our corres
    Hi Tina,

    is there someone on these boards who can explain why the CSN Contact page never brings about a reply? At least, not for me. I've now contacted them several times, including to implore then for our Peritoneal Board, to no avail.

    Is it that they are simply so busy, or is it that these boards are expected to be more self-sufficient, and therefore have less priority? No idea.

    Why do they have a Contact page?

    Frustrating when a number of us have been pushing for this now for quite a while.

    It would be good even just to have our letters acknowledged, with some explaination of their not being replied to.

    (My venting for today :) )

    I may be a bit quieter at present. It is not physical symptoms that have got me down. In fact, I'm disgustingly well given that I share the peritoneal cancer with you and others here. Pehaps I have some vulnerability to it but I've been experienceing some depression (which I know you will relate to). It's only been in the last few weeks and I asked if the chemo (carbo/taxol - now onto my 10th cycle) - might be causing, or contributing to it. He wasn't sure. "Chemo brain" is normaly only associated withe "brain fog"and memor loss, not depression as far as I know. I'm not experiencing confusion or more memory loss than has become typical over the last few years. I often share jokes with my friends about our shared experience of memory loss. And they don't have cancer.

    After this, my 10th cycle, onc. wants me to have a PET scan. Wonder if they will actually *see* something this time. Also due to have an annual pap smear. Results of both will be interesting.

    Woke too early, unable to get back to sleep so came online till I relax enough, hopefully to return to sleep

    Take good care,

    AussieMaddie
    xxxx
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #20
    AussieMaddie said:

    CSN not responding to our corres
    Hi Tina,

    is there someone on these boards who can explain why the CSN Contact page never brings about a reply? At least, not for me. I've now contacted them several times, including to implore then for our Peritoneal Board, to no avail.

    Is it that they are simply so busy, or is it that these boards are expected to be more self-sufficient, and therefore have less priority? No idea.

    Why do they have a Contact page?

    Frustrating when a number of us have been pushing for this now for quite a while.

    It would be good even just to have our letters acknowledged, with some explaination of their not being replied to.

    (My venting for today :) )

    I may be a bit quieter at present. It is not physical symptoms that have got me down. In fact, I'm disgustingly well given that I share the peritoneal cancer with you and others here. Pehaps I have some vulnerability to it but I've been experienceing some depression (which I know you will relate to). It's only been in the last few weeks and I asked if the chemo (carbo/taxol - now onto my 10th cycle) - might be causing, or contributing to it. He wasn't sure. "Chemo brain" is normaly only associated withe "brain fog"and memor loss, not depression as far as I know. I'm not experiencing confusion or more memory loss than has become typical over the last few years. I often share jokes with my friends about our shared experience of memory loss. And they don't have cancer.

    After this, my 10th cycle, onc. wants me to have a PET scan. Wonder if they will actually *see* something this time. Also due to have an annual pap smear. Results of both will be interesting.

    Woke too early, unable to get back to sleep so came online till I relax enough, hopefully to return to sleep

    Take good care,

    AussieMaddie
    xxxx

    the powers that be
    Have written myself twice about the PPC board. It's a bit strange that nothing has been done and nobody has received a reply isn't it?
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #21
    wanttogetwellsoon said:

    the powers that be
    Have written myself twice about the PPC board. It's a bit strange that nothing has been done and nobody has received a reply isn't it?

    Light at the end of the tunnel
    I have been given an email address of a lady who may or may not be able to create our Peritoneal discussion board. I have emailed her in the hope that they will create it. So just hang fire for a bit longer and lets see if it will appear.

    Love Tina xx

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