I guess it is back again (think it never really went away)

Tina Brown
Tina Brown Member Posts: 1,036 Member
edited November 2012 in Peritoneal Cancer #1
Just coming to the end of my "chemo break" as my oncologist suggested. I had a CT scan and my bloods done last week and will be getting the results in 2 days.

I do not have a very good feeling about this. My stomach is bloating, which is a sure sign that the cancer seeds are growing and squashing everything inside. Don't think it is ascites as the bloating comes and goes throughout the day and is linked to meal times.

But what can I expect? I have always known I will be living the rest of my life on and off chemo. This I have come to expect. This I do not mind terribly, but my body needs to be strong enough to cope with the relentless on-slaught of the poison. I will embrace the chemo if I need it again, but I do hope I am physically strong enough to cope.

I truely believe that with our cancer we can live / survive a long time as long as we are able to tolerate the chemo. Its like a game:

1 Chemo
2 Cancer shrinks
3 Rest
4 Cancer grows
5 Chemo.............. and it starts all over again.

So I am sitting here on a Saturday morning and preparing myself for bad news on Monday. I always do that. Expect the worse (and hope for the best) as if the worse happens then it is not a shock.

I experienced the biggest shock ever when I was first told I had cancer. I had gone to the hospital with fluid around my lungs. I saw a "respiratory/pulmonary" registrar thinking I had, at worse pneuomonia or at best a bit of fluid that once drained away I would be back to normal. But no, the doctor fetched a Macmilan nurse into the room before saying to me "Its not good news I'm afraid" To say I reacted badly would be an understatement. My mum had died the year before with cancer and I knew what Macmilan nurses do. So I ranted and raved at this poor nurse as I panicked. (I later apologised to her) So after this incident I never allow myself to be in a position when I could receive bad news unexpectedly.

Sorry for this lengthy post. Writing is really therapeutic for me and when it flows I just have to keep on going :)

I will post on Monday with an update on my results

Tina xxxxx

Comments

  • JulieL
    JulieL Member Posts: 141
    #2
    Your Post
    Hi Tina

    I understand what you are saying - when that first staggering diagnosis came out of blue from a lung problem it was unbelievable. When I asked what could have caused it as I had never had any problems with breathing or lungs before, I was told there could be many different reasons for it and they gave me a long list and right at the end a very very small possibility of cancer and WHAM. How could it be for a perfectly healthy person! I sometimes wonder what would have happened if the lung wasn't affected how long it would have taken for the symptoms to otherwise show up! I guess when they did it would have been very advanced and not a lot would have been possible to stop it. A good philosophy to expect the worst and hope for the best.
    I will be thinking of you Monday and hoping and praying that you get a good result. Yes we certainly have to be strong and it is amazing that we find the necessary strength when we need it. Your loving family and friends will all be rallying around you as will all your friends around the world on this site.

    Julie xxx
  • seatown
    seatown Member Posts: 261 Member
    #3
    Thinking good thoughts. . . .
    So sorry to hear that you are apparently having symptoms. I too can relate to the shock of the initial diagnosis--I'm sure we all can. I was driving home from the CT scan my PCP had arranged when he called my cell phone with CT scan results & the words, "We don't know, could be cancer." I nearly drove off the road. Somehow it seems to me that the unknown causes more distress than the known. At least for me, once I got into treatment -- & I must admit, once treatment seemed to be going so well -- the fears seemed easier to manage. You of course have much more experience dealing with all these issues. Hoping for only the best & for good results for you. Keep the faith, & thank you for all the encouragement you've given me.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
    JulieL said:

    Your Post
    Hi Tina

    I understand what you are saying - when that first staggering diagnosis came out of blue from a lung problem it was unbelievable. When I asked what could have caused it as I had never had any problems with breathing or lungs before, I was told there could be many different reasons for it and they gave me a long list and right at the end a very very small possibility of cancer and WHAM. How could it be for a perfectly healthy person! I sometimes wonder what would have happened if the lung wasn't affected how long it would have taken for the symptoms to otherwise show up! I guess when they did it would have been very advanced and not a lot would have been possible to stop it. A good philosophy to expect the worst and hope for the best.
    I will be thinking of you Monday and hoping and praying that you get a good result. Yes we certainly have to be strong and it is amazing that we find the necessary strength when we need it. Your loving family and friends will all be rallying around you as will all your friends around the world on this site.

    Julie xxx

    Dear JulieL
    Wow your situation is similar to mine. I was very fit and healthy before my diagnosis. I was a half marathon runner and was training for a race at the time. I couldn't breathe and I was coughing. Plus, when the consultant respiratory doctor began investigating my plueradesis he was puzzled and, same as you, was not expecting a cancer diagnosis. It took the hospital a few weeks to locate the cancer as they originally though it was in the breast. However, a mammogram ruled that out.

    Tina xxx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    seatown said:

    Thinking good thoughts. . . .
    So sorry to hear that you are apparently having symptoms. I too can relate to the shock of the initial diagnosis--I'm sure we all can. I was driving home from the CT scan my PCP had arranged when he called my cell phone with CT scan results & the words, "We don't know, could be cancer." I nearly drove off the road. Somehow it seems to me that the unknown causes more distress than the known. At least for me, once I got into treatment -- & I must admit, once treatment seemed to be going so well -- the fears seemed easier to manage. You of course have much more experience dealing with all these issues. Hoping for only the best & for good results for you. Keep the faith, & thank you for all the encouragement you've given me.

    Dear Seatown
    Being told you have cancer over the phone is awful, especially as you were driving. I have always said the beginning bit is by far the hardest as you do not know what to expect and it comes out of the blue. But, same as you, as soon as I was in treatment I felt a bit better as something was being down - I felt safer.

    Tina xx
  • JulieL
    JulieL Member Posts: 141
    #6
    Tina Brown said:

    Dear JulieL
    Wow your situation is similar to mine. I was very fit and healthy before my diagnosis. I was a half marathon runner and was training for a race at the time. I couldn't breathe and I was coughing. Plus, when the consultant respiratory doctor began investigating my plueradesis he was puzzled and, same as you, was not expecting a cancer diagnosis. It took the hospital a few weeks to locate the cancer as they originally though it was in the breast. However, a mammogram ruled that out.

    Tina xxx

    So many similarities
    I, too, was initially told I had breast as well as PPC or Ovarian Cancer and in the car when the call came through! The Dr concerned, apologised profusely but told me no time to waste and I must immediately get myself an oncologist and neck to pelvic CT scan! What a terrifying day that was! Thankfully an MRI the next week ruled out the breast - they were non malignant fibroids. That, at least, was a bonus! I was very fit, not a runner but working out at the gym regularly and an avid walker. I really miss my fitness! I had just purchased myself some small dumb bells to start working on my arms but the next day Doxil blisters all over my hands so haven't yet been able to do that and painful feet have prevented the walking. However I do Yoga which is wonderful. Do hope to eventually get back to both gym and walking though!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    Tina Brown said:

    Dear Seatown
    Being told you have cancer over the phone is awful, especially as you were driving. I have always said the beginning bit is by far the hardest as you do not know what to expect and it comes out of the blue. But, same as you, as soon as I was in treatment I felt a bit better as something was being down - I felt safer.

    Tina xx

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx
  • lulu1010
    lulu1010 Member Posts: 367
    #8
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    So good to hear!
    I am so happy for you! I know how relieved you must be. You have been thru so much and now you can dance, dance, dance! Have a wonderful hoiday with that little guy in your life! Keep on grinning!

    Linda
  • lulu1010
    lulu1010 Member Posts: 367
    #9
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    So good to hear!
    I am so happy for you! I know how relieved you must be. You have been thru so much and now you can dance, dance, dance! Have a wonderful hoiday with that little guy in your life! Keep on grinning!

    Linda
  • Nflinchum
    Nflinchum Member Posts: 75
    #10
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    Awesome news!
    Hi Tina
    Awesome news! I am so happy for you. So glad you get to have a break especially during the holidays. It has almost been a year since I got my bad news. The past year has been a journey. I go Monday for my CT scan and I hope I get good news too. You take care!
  • JulieL
    JulieL Member Posts: 141
    #11
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    Such wonderful news Tina
    So thrilled for you Tina - What a Christmas present! Just marvellous news - so glad you get a longer chemo break. You will really be able to enjoy your Christmas, specially with that little grandson.

    Love, Julie
  • westie66
    westie66 Member Posts: 642
    #12
    JulieL said:

    Such wonderful news Tina
    So thrilled for you Tina - What a Christmas present! Just marvellous news - so glad you get a longer chemo break. You will really be able to enjoy your Christmas, specially with that little grandson.

    Love, Julie

    Good news!
    Tina, that is just great! Enjoy Christmas! You deserve it.
    Cheryl
  • Semira
    Semira Member Posts: 381 Member
    #13
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    Hurray
    so great to read this!!!

    Thanks for the good news.

    A hug from Germany
    Petra
  • PatsieD
    PatsieD Member Posts: 99
    #14
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    You
    Really happy for you Tina. I'm on holiday at the mo but read your post . X x
  • PatsieD
    PatsieD Member Posts: 99
    #15
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    You
    Really happy for you Tina. I'm on holiday at the mo but read your post . X x
  • seatown
    seatown Member Posts: 261 Member
    #16
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    What a relief!
    So happy for you! Congratulations! Sounds like the best possible holiday gift, & I hope for similar news for everyone reading this.
  • MARYTESS
    MARYTESS Member Posts: 2
    #17
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    GOOD NEWS
    TINA I HAVE NEVER POSTED BEFORE BUT I WAS SO HAPPY WHEN I SAW YOUR RESULTS. MY DAUGHTER (BEST FRIEND) USUALLLY POSTS. I GO TO CHEMO TOMMORROW I HOPE IT IS WORKIND TAKE CARE MARY ELLEN
  • Millie2011
    Millie2011 Member Posts: 28
    #18
    Tina Brown said:

    Well I went to my oncologists for results of my CT & CA125. I had already prepared myself for bad news and was expecting my numbers to have gone up to the 1,000's and the scan to show growth.

    I WAS WRONG

    Not only did the scan show NO growth but the tumour in my pelvis had actually shrunk and my doctor said I had had a good result from the chemo. My numbers at my last test was 225 and they have only gone up to 278, which as the doctor said, does not mean anything. The best bit they don't want to see me again until late January 2013 so I get a lovely chemo break for christmas. I do have a small amount of fluid in my abdomen, which at the moment is not too bad. They said they can drain it if it becomes uncomfortable

    I was so convinced it was gonna be "back on the chemo for me". It just shows how powerful our minds can be. But protecting yourself by expecting the worse is much better than expecting good news for it to turn out bad.

    So I am a very happy bunny tonight and have been grinning most of the day.

    Take care Tina xxxx

    Good work!
    Hi Tina,
    I don´t know if you remember me but I live in Sweden and my mum had the same cancer and about a similar journey, knowing from fluid in her lungs. Mum did not cope with the chemo at all and she passed away last month after a 1,5 year struggle with ups and downs. She was so encouraged by you and how you seemed to cope with it all and I want to continue to give hope back to you. I think the physical strenght you had before diagnosis helps a lot and the fact that you accept it as a "life-long" cancer but able to rest in periods of time. I think you are wounderful dealing with this cancer and do a wounderful job to yourself<3 I hope that you will have a wounderful christmas and enjoy the very good news!

    Love,
    Sophie
    Sweden
  • Martin42
    Martin42 Member Posts: 1
    #19
    Tina Brown said:

    Dear JulieL
    Wow your situation is similar to mine. I was very fit and healthy before my diagnosis. I was a half marathon runner and was training for a race at the time. I couldn't breathe and I was coughing. Plus, when the consultant respiratory doctor began investigating my plueradesis he was puzzled and, same as you, was not expecting a cancer diagnosis. It took the hospital a few weeks to locate the cancer as they originally though it was in the breast. However, a mammogram ruled that out.

    Tina xxx

    Shock

    Tina

     

    This rings true for my mother.  We have been blind sided.  There were hints I think she had unexplained wheight loss over a year ago.  But really no issues at 74 she walks every day golfed and skied.  Then bam her stomach is bloated.  a round of tests.  Trust me through we still be waiting if we didn't push.  Her stomach had 3 litres drained on Wednesday now it's full again.  

     

    I was glad to hear that there is hope.  But wow.  Surgery is booked as well.  Positive thoughts

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