Personal Experience

Barnaby
Barnaby Member Posts: 33
in Colorectal Cancer #1

I am new here.  I was diagnosed with colorectal July 27, 2012.  I have had chemo, radiation and surgery, and have started maintenance chemo.  They want me to have 12 sessions.  I live alone and at times feel totally lost even though my neighbors have been wonderful.  I live through diarrhea, constipation, and anything else you can think of.  The radiation left me with radiation colitis.  Hard to explain how painful this has been.  Tomorrow will be 14 weeks since surgery.  Last week I could not breath so had to go to the emergency and they said I have gall bladder problems, well it turned out to be a kidney stone.  The anesthetic always makes me constipated so I went from that to massive diarrhea - 9 bouts in 2 hours when I finally got it stopped--use lots of lomotil.  So now have a stent in my ureter for a couple of weeks.  Everything that seems to be done for a cure has an after effect.  My surgeon said it would be a year before I would be back to normal.  I am not expecting normal though, but better.  My oncologists have been wonderful-I think oncologists are the most caring people in the world.  I seem to be up and down.  I used to swim every morning and kept doing so before surgery.  Since surgery it has been hard. luckily so far I have had no nausea.

Just interested in hearing about others experiences.

Comments

  • danker
    danker Member Posts: 1,276 Member
    #2
    Barnaby

    Yes, it can be a bumpy ride. But it is doable.  Just take it a day at a time.  I had various complications, but have been NED(clear of cancer)since 5/11.

    GOOD LUCK  to you!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Glad you found us

    You have found an accepting, loving community of people who are going through the same experiences as you. You can benefit not only from their shared experience and knowledge, but the love, thoughtfulness, support and if your thus inclined, prayers. 

    I hope you see improvement before a year

    Make the most of your neighbours, we all need that support from people who can physically help us, even if its just a talk over the garden fence. 

    thank you for joining ius, and be sure to visit often. 

  • tommycat
    tommycat Member Posts: 790 Member
    #4
    Hi Barnaby

    I was diagnosed with Stage 3 rectal cancer in 2009 and did the acccpeted protocol of treatment, plus extra oxalyplatin. I am now almost four years "out" from my original dx and I'm here to say that it does get better. Not overnight, but slowly and incrementally.

    I really felt like I turned a corner for the better in this last year or so. Before that it was managing either diarrhea or constipation and it was a delicate juggling act. But I did get better....and what one person can do, so can another.

    Keep track of the good days and I hope that soon they will overcome the bad days.

    Your Friend in California,

    Tommycat

    PS: I had the radiation colitis and it was mis-er-a-ble. Believe it or not, that gets better too. It just took time. Good luck and welcomeCool

  • Barnaby
    Barnaby Member Posts: 33
    #5
    tommycat said:

    Hi Barnaby

    I was diagnosed with Stage 3 rectal cancer in 2009 and did the acccpeted protocol of treatment, plus extra oxalyplatin. I am now almost four years "out" from my original dx and I'm here to say that it does get better. Not overnight, but slowly and incrementally.

    I really felt like I turned a corner for the better in this last year or so. Before that it was managing either diarrhea or constipation and it was a delicate juggling act. But I did get better....and what one person can do, so can another.

    Keep track of the good days and I hope that soon they will overcome the bad days.

    Your Friend in California,

    Tommycat

    PS: I had the radiation colitis and it was mis-er-a-ble. Believe it or not, that gets better too. It just took time. Good luck and welcomeCool

    radiation colitis

    That is great to hear.  I swear my rectum throbbed for 6 weeks.  Sure did not get much sleep.

  • Barnaby
    Barnaby Member Posts: 33
    #6
    danker said:

    Barnaby

    Yes, it can be a bumpy ride. But it is doable.  Just take it a day at a time.  I had various complications, but have been NED(clear of cancer)since 5/11.

    GOOD LUCK  to you!

    Good to hear

    Thanks for the support.

  • barbebarb
    barbebarb Member Posts: 464
    #7
    Barnaby said:

    radiation colitis

    That is great to hear.  I swear my rectum throbbed for 6 weeks.  Sure did not get much sleep.

    Hi Barnaby - The community on this board have been so helpful with my marathon. There is so much shared wisdom and encouragement. All surgeries take a toll on our bodies. Try to eat protein to heal and Seneca S helped me with constipation issues. If it is really bad, Milk of Magnesia helped. You will learn which one helps and how much to use as your body reacts. Your physician should be able to advise you accordingly. I keep immodium with me if going out and always have bathrooms mapped out.... Hoping you are feeling stronger each day. Someone always chimes in with helpful information when a concern is posted. Barb

  • devotion10
    devotion10 Member Posts: 623 Member
    #8
    Barnaby you will never be alone when you come here

    are you by any chance being treated at a large hospital?  Sometimes there are Palliative Care programs associated with oncology departments or independent from oncology designed to help with chronic disease, pain, and side effects from necessary treatment regimens.  You might want to check on this.  We had to discover this on our own even though there was literature around the hospital; we did not make sense of it all.  It sounds like you could use some help from a palliative care doctor whose job is to just make you feel better.

    Also the wonderful individuals on this board can provide great support to you and may have some tips they have used for comfort.  In some ways, your surgery is still very recent and your body is healing and getting stronger.  Hang in there, maybe check out palliative care, it is not hospice or anything like that ... it is just designed to help alleviate pain and discomfort.

    Best to you,

    Cynthia

  • steveandnat
    steveandnat Member Posts: 886
    #9
    Cancer roller coaster

    We have to hang on tight for this cancer rollercoateraster ride. We are lucky to have good oncs and neighbors, nurses and so many others. I pray your ride slows down and we can have more good days than bad.  Jeff

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    Hi Barnaby-

    and welcome to the forum!  Sounds like you've been through an awful lot.  My doc said two years for the side effects of treatment to resolve...I am just over two years out now from chemo, and I have to say I still have some symptoms.  I think it takes a long time to fully recover.  Radiation seems to be especially hard on people.  Hope you can get back to swimming soon...although I am being a horrible couch potato at the moment, I know I feel better when I get in some exercise.  Keep us posted on how you're doing~Ann Alexandria

  • steved
    steved Member Posts: 834 Member
    #11
    Welcome
    I had stage three rectal accent back in2004 and had a similar path and like most here had the challenge of the side effects esp regarding thebowels. It does gradually improve though it took me five years to stop carrying some lomotil type drugs around with me for use as needed. As you say the aim is for 'Better than normal' though I think what you are getting at is the future normal may be different from your previous normal which is exactly right. It is a long journey it will change aspects of who you are perhaps both physically and psychologically but some aspects of that will be for the better. I am still on that journey nine years later and hardly recognise some aspects of myself from the pre-cancer days.
    Let us know how things go and best of luck,
    Steve
  • Barnaby
    Barnaby Member Posts: 33
    #12
    devotion10 said:

    Barnaby you will never be alone when you come here

    are you by any chance being treated at a large hospital?  Sometimes there are Palliative Care programs associated with oncology departments or independent from oncology designed to help with chronic disease, pain, and side effects from necessary treatment regimens.  You might want to check on this.  We had to discover this on our own even though there was literature around the hospital; we did not make sense of it all.  It sounds like you could use some help from a palliative care doctor whose job is to just make you feel better.

    Also the wonderful individuals on this board can provide great support to you and may have some tips they have used for comfort.  In some ways, your surgery is still very recent and your body is healing and getting stronger.  Hang in there, maybe check out palliative care, it is not hospice or anything like that ... it is just designed to help alleviate pain and discomfort.

    Best to you,

    Cynthia

    Palliative care

    Thanks for the info, will see what I can find.  Although my oncologist has been wonderful - I can email him and he always gets back to me within and hour.  His PA is also great.  But any help is appreciated.

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