I can't believe I did it!

torrance
torrance Member Posts: 118
in Anal Cancer #1
Ok, I can't believe I did it, "butt" I did! And I did it for all of us, took one for the team! I was invited to speak to a group of oncologists, urologists, pelvic physical therapists, psychiatrists, psychologist, etc. The topic for the forum was sexual dysfunction in the oncological patient! How's that for a mouth full? My pelvic physical therapist invited me to give the patient perspective as she felt it would help educated the group. I really was a "unique" case to them, unfortunately, because not many know "about" us and our special needs. Most cases they encounter come from the ob/gyn dept or male prostate cancer type patients. My therapist had to use her imagination and improvise treatment and tools and educate herself to be able to help me, and she did. You have NO idea how out of my comfort zone this was for me and to top it off, there were huge projected images from my examine under anesthesia for all the room to see. I can't even tell you. However I approached it with a sense of humor and do feel that I educated all of them, but mostly myself. My radiation oncologist had agreed to be a presenter as well as my PT. My og/gyn dr was there too. I started by introducing myself to them and told the audience they probably didn't recognize me with my clothes on! It sure was a great ice breaker and helped me to relax. Anyway it was a great experience and was told by many they had learned a lot. YEAH!

On a side note, it pretty much sucked that I couldn't partake in the catered meal, I had my anoscope scheduled for the next morning which means no solid food the day before. So at the end of the evening I got go home and use my dilators and give myself an enema as a thank you to myself! My anoscope was fine, NED, however I have hemmoroids that will not heal, surgery would be the best option, but it isn't an option as it would probably never heal. So instead I get to try a new sulfa enema each night that I am supposed to "hold" all night! Anyway, that's why I am up posting late....so much for holding it. Guess I am calling my doc tomorrow.

This board has been so inspirational for me and I only hope and I am helping encourage others as you have all done for me.

Love you all,
Joanne

PS is anyone in the SoCal area?

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Hi Joanne!
    All I can say is You Rock! That's awesome that you gave this presentation and I'm sure it opened many of those professionals' eyes as to what we deal with after this brutal treatment. Good for you! I'm sorry you missed out on the meal, but on the flip side, your scope was NED, so now you can treat yourself to a nice meal somewhere else. I'm sorry to hear about the hemorrhoid issues. Geez, it's always something, isn't it? But as we know, that's a minor issue compared to what we've experienced.

    On behalf of all anal cancer survivors, I thank you for using your experience to educate those who need to understand what this treatment does to people. God bless you!
  • eihtak
    eihtak Member Posts: 1,473 Member
    #3
    mp327 said:

    Hi Joanne!
    All I can say is You Rock! That's awesome that you gave this presentation and I'm sure it opened many of those professionals' eyes as to what we deal with after this brutal treatment. Good for you! I'm sorry you missed out on the meal, but on the flip side, your scope was NED, so now you can treat yourself to a nice meal somewhere else. I'm sorry to hear about the hemorrhoid issues. Geez, it's always something, isn't it? But as we know, that's a minor issue compared to what we've experienced.

    On behalf of all anal cancer survivors, I thank you for using your experience to educate those who need to understand what this treatment does to people. God bless you!

    Proud of you
    So very proud of you. I have had to speak before groups for other reasons and always get a little nervous so I can only imagine. I wish I could have been there to hear you. There is so much about our treatment that people, even our docs just don't really have a clue about...thanks for being our voice!!
  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #4
    Congrats!
    Congrats on being NED and letting the professionals know the side effects of treatment!

    Ann
  • torrance
    torrance Member Posts: 118
    #5
    Update!
    Just when you think...anyway I went for my weekly Pelvic PT on Thursday and found that I now have what the GYN thinks is a lipoma, which is a fatty tumor. However, because of the cancer history it will be labed just to be sure. Found out that they are quite common, most people have them and they are not a probably, but because of our friend (radiation, the gift that keeps giving) the vaginal tissue is paper thin which has caused the tumor to protrude and must be removed before it could rupture. So one more time under the knife in the next two weeks. I am not worried, can't say I am looking forward to the "local" anesthesia that will be used for the removal. I think I really would prefer the general and perhaps could talk the doc into keeping me out for a good eight hours. I sure could use some good sound sleep!

    Joanne
  • RoseC
    RoseC Member Posts: 559
    #6
    I am so impressed! Thank you
    I am so impressed! Thank you so much for making that presentation and a great big CONGRATULATIONS!!!

    (Sorry to hear about your latest development - I hope things work out in the easiest way possible.)
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    torrance said:

    Update!
    Just when you think...anyway I went for my weekly Pelvic PT on Thursday and found that I now have what the GYN thinks is a lipoma, which is a fatty tumor. However, because of the cancer history it will be labed just to be sure. Found out that they are quite common, most people have them and they are not a probably, but because of our friend (radiation, the gift that keeps giving) the vaginal tissue is paper thin which has caused the tumor to protrude and must be removed before it could rupture. So one more time under the knife in the next two weeks. I am not worried, can't say I am looking forward to the "local" anesthesia that will be used for the removal. I think I really would prefer the general and perhaps could talk the doc into keeping me out for a good eight hours. I sure could use some good sound sleep!

    Joanne

    Hi Joanne--
    Sorry to hear of your latest issue, but I hope the procedure won't be bad. Here's hoping it's removed and determined to be benign.
  • cap630
    cap630 Member Posts: 151 Member
    #8
    Yeah!
    Good for you!!!
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #9
    cap630 said:

    Yeah!
    Good for you!!!

    Torrance
    Congratulations on your accomplishments.

    ThAnks for your info on the anascope prep.

    I live in West L.A and work in Torrance several times a month.

    In the beginning I was ashamed of my anal cancer diagnosis and did not want to deal with the stigma associated with it. Now as I am recovering mentally and physically from the cancer and the ataxia, I find myself taking baby steps and sharing with people my diagnosis. Baby steps...
  • torrance
    torrance Member Posts: 118
    #10
    Phoebesnow said:

    Torrance
    Congratulations on your accomplishments.

    ThAnks for your info on the anascope prep.

    I live in West L.A and work in Torrance several times a month.

    In the beginning I was ashamed of my anal cancer diagnosis and did not want to deal with the stigma associated with it. Now as I am recovering mentally and physically from the cancer and the ataxia, I find myself taking baby steps and sharing with people my diagnosis. Baby steps...

    Torrance
    I was born and raised in Torrance! Small world, wish I still lived there.

    Wow, I am so sorry to hear you felt shame with your diagnosis. Guess I never gave it a second thought. Maybe I am naive, but I didn't realize there was a stigma. I don't think most people even know anal cancer exists and when they hear those words they are kinda dumbfouned. I use it as an opportunity to inform and educate as appropriate. I guess if they thought something contrary to my thoughts I would just consider it their problem not mine! When I share the typical links, smoking, HPV, multiple sex partners, anal sex and that I had none of those I have received nothing but compassion and curiosity and am more than happy to share. I think when we are comfortable it helps those around us to feel comfortable.

    Keep doing those baby steps and free yourself, you don't need to be carrying that burden around.

    If you would ever like to chat or meet for coffee that would be fun!

    Joanne
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #11
    torrance said:

    Torrance
    I was born and raised in Torrance! Small world, wish I still lived there.

    Wow, I am so sorry to hear you felt shame with your diagnosis. Guess I never gave it a second thought. Maybe I am naive, but I didn't realize there was a stigma. I don't think most people even know anal cancer exists and when they hear those words they are kinda dumbfouned. I use it as an opportunity to inform and educate as appropriate. I guess if they thought something contrary to my thoughts I would just consider it their problem not mine! When I share the typical links, smoking, HPV, multiple sex partners, anal sex and that I had none of those I have received nothing but compassion and curiosity and am more than happy to share. I think when we are comfortable it helps those around us to feel comfortable.

    Keep doing those baby steps and free yourself, you don't need to be carrying that burden around.

    If you would ever like to chat or meet for coffee that would be fun!

    Joanne

    Torrance
    Hi,

    I would love to meet for coffee, possibly in the second week of June. If that is good for you, my schedule is fairly open then. Let's talk about it as we get closer to the date.

    I moved from NJ to Torrance. At first I lived on Emerald and then to 242nd at the foot of P.V. I lived in Torrance from1985 to 1989. It was the perfect place to live,sight unseen. I actually ony have one client in Torrance, but pass thru there on Hawthorne Blvd on my way to P.V. I am very behind in my work, from being ill. I am trying to catch up, that's why I have no free time during the day now.
  • DeloresBlackcow
    DeloresBlackcow Member Posts: 7
    #12
    Good For You!!
    Thank you for letting them all know some of the things we had to experience.

    Delores
  • DeloresBlackcow
    DeloresBlackcow Member Posts: 7
    #13
    Good For You!!
    Thank you for letting them all know some of the things we had to experience.

    Delores
  • torrance
    torrance Member Posts: 118
    #14
    Phoebesnow said:

    Torrance
    Hi,

    I would love to meet for coffee, possibly in the second week of June. If that is good for you, my schedule is fairly open then. Let's talk about it as we get closer to the date.

    I moved from NJ to Torrance. At first I lived on Emerald and then to 242nd at the foot of P.V. I lived in Torrance from1985 to 1989. It was the perfect place to live,sight unseen. I actually ony have one client in Torrance, but pass thru there on Hawthorne Blvd on my way to P.V. I am very behind in my work, from being ill. I am trying to catch up, that's why I have no free time during the day now.

    Torrance
    That would be awesome. I lived in Torrance from 1958 to 1977! Mostly lived near Hawthorne and Sepulveda! Keep me posted on your schedule, I am flexible, I mean my schedule is, not so much me in the hips! LOL

    Joanne

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