One year today.

seatown
seatown Member Posts: 261 Member
in Peritoneal Cancer #1

It was a year ago today that I heard it, over the phone: "Carcinoma." Took a few more days before they settled on PPC, & a few more days after that to get set on a treatment course with the oncologist. Then, I wondered if I'd be here in a year. Today, I'm grateful for positive results overall & for all the support I've found here.

 

Comments

  • stella65
    stella65 Member Posts: 152
    #2
    Your'e doing great!

    Well done to you, so glad you are doing well and keeping positive X

  • Lovingmymom
    Lovingmymom Member Posts: 54
    #3
    Congratulations

    My mom was diagnosed with secondary peritoneal cancer, pursuant to gallbladder cancer in November 2011.  She was told 7-10 months.  P.S.  She is doing GREAT 20 months later!!!.  After taking a year off of chemo, she just went back in and has 2 treatments left until the next scan.  Her numbers remain low so it's business as usual. 

    Mom is a fighter and everyday she wakes up and puts one foot in front of the other and calls it a 'good day'.

     

    'Good day' to you Seatown and be well!!! Celebrate and live!!!!

  • PatsieD
    PatsieD Member Posts: 99
    #4
    You

    Really great news. X x

  • Rosamond M
    Rosamond M Member Posts: 86 Member
    #5
    One Year Today.

    Congratulations!! Thank you for sharing this great news with us. When we begin on this journey the path ahead looks pretty daunting and it is hearing news such as yours that brighten our day. Warm regards and best wishes.

                                

     

  • JulieBelle
    JulieBelle Member Posts: 61
    #6
    Well done Girl!

    You are doing so well and lovely to see your smiling face.  Sorry, I havent been able to log on for a while so have had to re-register!

    Keep strong and enjoy everyday to the max!

    Julie x   

  • seatown
    seatown Member Posts: 261 Member
    #7
    JulieBelle said:

    Well done Girl!

    You are doing so well and lovely to see your smiling face.  Sorry, I havent been able to log on for a while so have had to re-register!

    Keep strong and enjoy everyday to the max!

    Julie x   

    Thanks, all!

    Thanks to everyone for your kind words.  At the time of my original post, I was feeling a little down from looking back at a year's struggle.  That feeling has passed, thanks in part to all the cheering messages.  Best of luck to us all!

  • Best Friend
    Best Friend Member Posts: 222
    #8
    Hang in there. Seems like its

    Hang in there. Seems like its one thing to the next for my mom. Don't know how u do it! Congrats for all ur hard work.

  • mr_robert
    mr_robert Member Posts: 2
    #9
    positive results

    Great! I'm very happy for you.  I am new here and as I sit here with my friendly jar sitting in my fanny pack and attached to my chest via tubes, I am having my first infusion which will be disconnected later today. This is the first entry I've made.

    I really am at a loss as to how to direct this initial posting.  They say they don't know where my peritoneal is coming from after laparoscopy, scans, diagnotics, ct, pt, ct with dye and I don't know if that is crucial or not.  I also don't know what all the figures I see you mentioned in another post mean and maybe I don't want to know right now but I guess I will learn with more experience.

    One of the most difficult aspects I seem to be facing now is what I consider to be inappropriate comments from the few friends/family members I have told of my condition.

    People say things without seemingly thinking of what they are saying and it changes what could be a positive mood into a negative mood filled with anger I direct towards the uncouth speaker.  I imagine a group of some kind of support might be a good way to alleviate some of my pain at these comments which I certainly don't need on top of everything else I am going through right now.

    That's all.  I'm not a big poster to forums as I do/did have a very, very busy and active life before this struck me back in June/July but I thought coming here might help in some manner or other.

  • stella65
    stella65 Member Posts: 152
    #10
    mr_robert said:

    positive results

    Great! I'm very happy for you.  I am new here and as I sit here with my friendly jar sitting in my fanny pack and attached to my chest via tubes, I am having my first infusion which will be disconnected later today. This is the first entry I've made.

    I really am at a loss as to how to direct this initial posting.  They say they don't know where my peritoneal is coming from after laparoscopy, scans, diagnotics, ct, pt, ct with dye and I don't know if that is crucial or not.  I also don't know what all the figures I see you mentioned in another post mean and maybe I don't want to know right now but I guess I will learn with more experience.

    One of the most difficult aspects I seem to be facing now is what I consider to be inappropriate comments from the few friends/family members I have told of my condition.

    People say things without seemingly thinking of what they are saying and it changes what could be a positive mood into a negative mood filled with anger I direct towards the uncouth speaker.  I imagine a group of some kind of support might be a good way to alleviate some of my pain at these comments which I certainly don't need on top of everything else I am going through right now.

    That's all.  I'm not a big poster to forums as I do/did have a very, very busy and active life before this struck me back in June/July but I thought coming here might help in some manner or other.

    Hi to you

    I hope you find some help here, it is good to chat with people going through the same things, I would just like to make a comment on what you say about relatives and friends, my mum had ppc and I have to say, it was so very hard to know what to say a lot of the time, I don't know what comments you have had but just remember it is so hard for the people that care for you to know how to be and what to say, perhaps you could talk to them about it?  I wish you well X

  • seatown
    seatown Member Posts: 261 Member
    #11
    mr_robert said:

    positive results

    Great! I'm very happy for you.  I am new here and as I sit here with my friendly jar sitting in my fanny pack and attached to my chest via tubes, I am having my first infusion which will be disconnected later today. This is the first entry I've made.

    I really am at a loss as to how to direct this initial posting.  They say they don't know where my peritoneal is coming from after laparoscopy, scans, diagnotics, ct, pt, ct with dye and I don't know if that is crucial or not.  I also don't know what all the figures I see you mentioned in another post mean and maybe I don't want to know right now but I guess I will learn with more experience.

    One of the most difficult aspects I seem to be facing now is what I consider to be inappropriate comments from the few friends/family members I have told of my condition.

    People say things without seemingly thinking of what they are saying and it changes what could be a positive mood into a negative mood filled with anger I direct towards the uncouth speaker.  I imagine a group of some kind of support might be a good way to alleviate some of my pain at these comments which I certainly don't need on top of everything else I am going through right now.

    That's all.  I'm not a big poster to forums as I do/did have a very, very busy and active life before this struck me back in June/July but I thought coming here might help in some manner or other.

    Try to see the big picture?

    I'd like to agree with Stella -- it's certainly true that family & friends can say things that may seem inappropriate or even hurtful. I think's best to give these people the benefit of the doubt, with the knowledge that they may be struggling to find anything at all to say. For myself, I decided early on that I was going to share as much as possible with family & friends because I didn't want my cancer to be discussed in hushed tones but wanted to encourage people to talk about it. Thus I've detailed my treatment in a sort of blog -- keeps me from having to tell the same news over & over again, & I find it useful & satisfying for myself as well.

    I would encourage you to find a support group with the idea of finding people who can related directly to your experience.  I hope you can also find some support here in this forum.

    The precise origin of my peritoneal cancer was also difficult to determine. Different theories have been offered, & as the months have passed I've regularly learned new details. As to numbers -- if you haven't already discovered the CA 125 marker, maybe you should consider asking your doctors about it. I've found that most people with peritoneal cancer are acutely aware of this number, since it seems to be the benchmark the medical professionals track very closely. I can still recall the euphoria I felt when I learned my CA 125 number had descended from 2,738 shortly after my diagnosis a year ago to today's 15 -- well within the normal range of 0-30. 

    Good luck! I hope things will look up for you.

  • mr_robert
    mr_robert Member Posts: 2
    #12
    seatown said:

    Try to see the big picture?

    I'd like to agree with Stella -- it's certainly true that family & friends can say things that may seem inappropriate or even hurtful. I think's best to give these people the benefit of the doubt, with the knowledge that they may be struggling to find anything at all to say. For myself, I decided early on that I was going to share as much as possible with family & friends because I didn't want my cancer to be discussed in hushed tones but wanted to encourage people to talk about it. Thus I've detailed my treatment in a sort of blog -- keeps me from having to tell the same news over & over again, & I find it useful & satisfying for myself as well.

    I would encourage you to find a support group with the idea of finding people who can related directly to your experience.  I hope you can also find some support here in this forum.

    The precise origin of my peritoneal cancer was also difficult to determine. Different theories have been offered, & as the months have passed I've regularly learned new details. As to numbers -- if you haven't already discovered the CA 125 marker, maybe you should consider asking your doctors about it. I've found that most people with peritoneal cancer are acutely aware of this number, since it seems to be the benchmark the medical professionals track very closely. I can still recall the euphoria I felt when I learned my CA 125 number had descended from 2,738 shortly after my diagnosis a year ago to today's 15 -- well within the normal range of 0-30. 

    Good luck! I hope things will look up for you.

    Thank you both for your

    Thank you both for your postive input.

    I had no idea about ca125 and to some extent, I am almost afraid to find out what my number is.  I just want to be healthy again although they tell me what I have is incurable.  It would be nice to get some positive feedback from the doctors as to hope for the future but they don't seem to have that in their operating system.

    It is good to have had my first infusion and to have the fanny pack removed so I can sleep and get around more comfortably.

    Yesterday after I was disconnected for the first time, I was told about 'metallic mouth', stats on bowel movements, cold finger sensitivity and so on and so forth.

    Sometimes it all seems to be much to much to absorb so thanks to one family member who is joining me and taking notes and keeping things clear.

  • seatown
    seatown Member Posts: 261 Member
    #13
    mr_robert said:

    Thank you both for your

    Thank you both for your postive input.

    I had no idea about ca125 and to some extent, I am almost afraid to find out what my number is.  I just want to be healthy again although they tell me what I have is incurable.  It would be nice to get some positive feedback from the doctors as to hope for the future but they don't seem to have that in their operating system.

    It is good to have had my first infusion and to have the fanny pack removed so I can sleep and get around more comfortably.

    Yesterday after I was disconnected for the first time, I was told about 'metallic mouth', stats on bowel movements, cold finger sensitivity and so on and so forth.

    Sometimes it all seems to be much to much to absorb so thanks to one family member who is joining me and taking notes and keeping things clear.

    just one more thing. . . .

    Just another thought: obviously I don't know the details of your circumstances. But if you are not getting positive encouragement from your doctors, I would suggest you might think about getting some further opinions. I also was devastated and frightened to learn I have an incurable (although some disagree) cancer. But I have found my doctors have been unfailingly optimistic and encouraging, while at the same time being realistic about my situation. They don't make any promises about the future, but they certainly offer hope. If you are getting care in a hospital setting, maybe talking with a hospital social worker could make you aware of more options.

    Again, good luck! Hoping for the best for you & looking forward to hearing more about your progress.

Discussion Boards