Two years after tx..

Lorikat
Lorikat Member Posts: 681 Member
in Anal Cancer #1

Side effects that are not accepted as side effects!  Blood in urine with no infection.  Feet burning..  Started not so bad during tx now keeps me awake some nights and ankles get weird electrical shocks in them....  Wrists and thumbs following suite...  Unpredictable "crappy" days....  Chemo brain...   Sigh!!

flip side, NED.  feeling good emotionally...  Trying new med for the neuropothy.. (Fingers crossed)   Have a hopeful attitude.....  My 1956 Thunderbird now has power steering and I can cruise....  Not a bad life.  Lorikat

 

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Lorikat

    Congrats on being 2 years post-treatment!  That's great!  I'm sorry that you are having some ongoing side effects, but it sounds like you are dealing with everything quite well, attitude-wise.

    You are obviously a car girl--me too!  We have a '67 Vette that we cruise around in.  I'm too short to drive it, unfortunately!  Enjoy your T-bird--those are classics!

  • sandysp
    sandysp Member Posts: 868 Member
    #3
    Congratulations . . .

    You are catching up with me, girlfriend? Two years, neuropathy, et al!

    We are lucky to know a few more good days, though, aren't we? I am feeling more good days, in spite of the set backs. Life seems pretty awesome.

    We did most of it together. I am privileged ro ride the cancer coaster with you.!

    Fondly,

    Sandy

  • Lorikat
    Lorikat Member Posts: 681 Member
    #4
    sandysp said:

    Congratulations . . .

    You are catching up with me, girlfriend? Two years, neuropathy, et al!

    We are lucky to know a few more good days, though, aren't we? I am feeling more good days, in spite of the set backs. Life seems pretty awesome.

    We did most of it together. I am privileged ro ride the cancer coaster with you.!

    Fondly,

    Sandy

    Martha, my Tbird is so small

    Martha, my Tbird is so small I'm the only one in my family who is short enough to drive it!  LOL!

     

    and Sandy, we have been on about the same roller coaster for the las two years.  I was stretched out on the couch today with all the windows in the house open and a breeze blowing through the house and it felt sooooo good!  Fall in the desert is really short, but really awesome.  Makes all the side effects faze out....  Hugs!

     

  • sandysp
    sandysp Member Posts: 868 Member
    #5
    Lorikat said:

    Martha, my Tbird is so small

    Martha, my Tbird is so small I'm the only one in my family who is short enough to drive it!  LOL!

     

    and Sandy, we have been on about the same roller coaster for the las two years.  I was stretched out on the couch today with all the windows in the house open and a breeze blowing through the house and it felt sooooo good!  Fall in the desert is really short, but really awesome.  Makes all the side effects faze out....  Hugs!

     

    It's getting better

    I know looking back I am better. As soon as they fix up your neuropathy pain you will get a chance to feel that way too.

    We have a few years to go before we "graduate" from ACU (Anal Cancer University), but this year is definitely better than last!

    Enjoy that desert breeze and your TBird. You deserve it.

    Sincerely,

    Sandy

  • Lorikat
    Lorikat Member Posts: 681 Member
    #6
    sandysp said:

    Congratulations . . .

    You are catching up with me, girlfriend? Two years, neuropathy, et al!

    We are lucky to know a few more good days, though, aren't we? I am feeling more good days, in spite of the set backs. Life seems pretty awesome.

    We did most of it together. I am privileged ro ride the cancer coaster with you.!

    Fondly,

    Sandy

    it has been  (and is) quite a

    it has been  (and is) quite a ride.  We have cussed and discussed this nightmare called cancer for the last two years Sandy.  I really dislike the side effects of treatment....  And more so the fact that they aren't always accepted as such!  Sooo..  Let's keep in touch and share the good things as they arrive, like Martha in her Vette and me in my T-Bird!  Now what kind of over priced, good looking cruising car should you have?  Hummmm....  I believe that you should have a boat tailed Auburn!  It's a CLASSY car for cruising!  Of course ONE of us need to win the lottery to keep these cars bought and on the road!  LOL!    Lorikat

  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    Lorikat said:

    it has been  (and is) quite a

    it has been  (and is) quite a ride.  We have cussed and discussed this nightmare called cancer for the last two years Sandy.  I really dislike the side effects of treatment....  And more so the fact that they aren't always accepted as such!  Sooo..  Let's keep in touch and share the good things as they arrive, like Martha in her Vette and me in my T-Bird!  Now what kind of over priced, good looking cruising car should you have?  Hummmm....  I believe that you should have a boat tailed Auburn!  It's a CLASSY car for cruising!  Of course ONE of us need to win the lottery to keep these cars bought and on the road!  LOL!    Lorikat

    Lorikat

    LOL!  I'll buy a ticket this weekend!  Laughing

  • sephie
    sephie Member Posts: 650 Member
    #8
    congrats

    wow...great..... i love 56 and 57 t birds.... they are beautiful cars.......keep on cruising.... sephie

  • horsepad
    horsepad Member Posts: 146 Member
    #9
    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

  • sephie
    sephie Member Posts: 650 Member
    #10
    horsepad said:

    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

    yes horsepad, 2 years great

    yes, docs at md anderson said that MOST reocurrances happen within the first 2 years.... ....  they also told me that 95% of their anal cancer patients do not have problems with side effects.... i am in the 5 % that do........ sephie

  • sephie
    sephie Member Posts: 650 Member
    #11
    lorikat

    have you had a cystoscope to look at bladder.... i have had only one ( 4 years post tx).... they saw radiation damage but no tumor.....i have blood in urine also with no infection--- not visible to eye...... sephie

  • Lorikat
    Lorikat Member Posts: 681 Member
    #12
    sephie said:

    lorikat

    have you had a cystoscope to look at bladder.... i have had only one ( 4 years post tx).... they saw radiation damage but no tumor.....i have blood in urine also with no infection--- not visible to eye...... sephie

    Thanks Sephie...  I'll ask at

    Thanks Sephie...  I'll ask at MDA and see what they say!  So happy it was radiation damage (boy that sounds bad!) and not cancer!

    i MAY be in your area next month....  Will let you know if I am...  Would love to have coffee!  LORIKAT

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    horsepad said:

    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

    horsepad

    Congratulations on reaching the 2-year mark!  That's a huge milestone with cancer and I think it is true that the chance of recurrence drops significantly after that.  I hope you are breathing a little easier, just like your oncologist said.  It's great to hear that you are not dealing with any side effects that are not manageable.  As you well know, some are not so fortunate.  I hope that continues for you and that nothing crops up in the future. 

    I am so glad to hear about all the things you do for your granddaughters!  It means you are feeling good, strong and have plenty of energy to keep up with all of their activities.  However, I can see why you might want to move closer to town.  It's a tough decision, I'm sure.  May God give you the answer.  Until then, I wish you all the energy you need to keep up!  Thanks for giving us such an uplifting update!

  • pializ
    pializ Member Posts: 508 Member
    #14
    Lorikat said:

    Thanks Sephie...  I'll ask at

    Thanks Sephie...  I'll ask at MDA and see what they say!  So happy it was radiation damage (boy that sounds bad!) and not cancer!

    i MAY be in your area next month....  Will let you know if I am...  Would love to have coffee!  LORIKAT

    Lorikat

    Great news! 

    2 years seems to be a good place to be! 

    May you always be NED!

    Liz

  • eihtak
    eihtak Member Posts: 1,473 Member
    #15
    horsepad said:

    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

    horsepad.....

    I am 2.5 years post treatment and was told the same thing at my 2yr mark. It seems that memory and things of that nature are fairly common for a variety of reasons. I have not experienced this myself, in fact since going back to school I feel my memory skills have improved just a little. I think it may be because I have more time to focus on the work then back in the days of raising five kids, working, etc. I also help with grandsons......we are blessed to be able to do so, yet it can be exhausting and time consuming I know. I live in rural Wisconsin, and although we don't farm, we are 20-30 minutes from town also. My husband will not move closer, but if it were up to me I would love to be just a little bit. I can imagine finding good help with all the work is a difficult thing. Best of luck with your decision making!!

  • Marynb
    Marynb Member Posts: 1,118
    #16
    horsepad said:

    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

    Horsepad
    You really are inspiring. You should do whatever makes your life easier and more enjoyable. I cannot imagine managing a 70 acre farm right now. It seems you would enjoy your time with your grandchildren more is you were closer to town. I hope you can make a decision that you feel at peace with.
  • Marynb
    Marynb Member Posts: 1,118
    #17
    Two years!
    Congratulations, Lorikat! That must feel pretty Great!!!!
  • sephie
    sephie Member Posts: 650 Member
    #18
    Lorikat said:

    Thanks Sephie...  I'll ask at

    Thanks Sephie...  I'll ask at MDA and see what they say!  So happy it was radiation damage (boy that sounds bad!) and not cancer!

    i MAY be in your area next month....  Will let you know if I am...  Would love to have coffee!  LORIKAT

    lorikat

    yes, if you get here, let me know......we will definitely meet..... sephie

  • pializ
    pializ Member Posts: 508 Member
    #19
    horsepad said:

    my 2 years was 9/29.  my

    my 2 years was 9/29.  my oncologist said I could breathe a little easier if i hit the 2 yr. mark because most, but not all, cancer will reoccur in the first two years.   Has anyone else had the doctor tell them the first two years is when most cancer returns?   The only side effect I have is my memory.  My oncologists have no concern about it but I find it embarrassing and frustrating.  That being said I am sooooo grateful and blessed to be NED with no major side effects.  I am thinking about selling my 70 acre farm and buying 5-10 acres close to town.  My granddaughters are so involved in extracurricular activites that, although I LOVE my farm, it's alot of time and driving going back and forth multiple times a day(30 miles each trip) running kids to dance, school, choir, basketball, church, 4-H, etc.  Also, finding farm help is extremely hard.  UGH!!!!  what to do, what to do.

    Horsepad

    Fantastic news! 

    It must take some of the worry away. Good to see you thinking about the future!

    NED is beautiful

    Liz

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