Problems post treatment

Christy76 Member Posts: 30

It's been a long time since I've been here. I'm at my wits end with doctors. In 2019 I was diagnosed with stage three rectal cancer. I first underwent a chemo/radiation combo where I took Xeloda twice a day during the week while getting radiation treatments Monday through Friday. This was followed by surgery that did not go as well as they planned. I was supposed to be in surgery for three hours but they had trouble and I was in there for eight. Two weeks after I left the hosptial after surgery I had a pulmonary embolism and nearly died. I was in ICU for a week and in the hosptial for a total of two weeks. When I healed from that is was back to Xeloda, two weeks on, one week off for a total of six months.


Now that treament has been over for three months the doctor says he will not support my disablity for much longer. The problem is I still have many issues that no one will help me with. The colostomy itself has constant diahrrhea. It does not matter how well or how poorly I eat. I just keep getting it. I have to stop myself up with Imodium at least twice a week. Since the surgery I have a hard time controling my bladder which will not fully empty and then minutes after I'm through in the bathroom it decides to empty what wouldn't come out. I still have little energy and aches and pains especically at night. I bought a thing from CVS after the blood clot to keep an eye on my heart rate and blood oxygen level and my heart rate will spike from minor activity like walking around the apartment. My blood oxygen level will begin to dip down to 93 when I walk the dog. This is below average and my over all blood oxygen level is slowly decreasing. It used to be that sitting around it stayed at 97 then it was 96 now sometimes it's 95. Yes it's still above where it needs to be to keep me alive but I don't like that it's slowlly decreasing.


I have told my cancer doctor all about this. Everything I have posted here I have told him multiple times. He doesn't seem to care. He told me as to my blood oxygen level as long as it stays above 90 I'm okay. When I was in the hospital and it dropped to 89 or less they put me on oxygen so what he is saying is as long as it remains one point above that I'm fine. At this point I'm going to have to begin looking for work and in my current state I am the last person anyone will want to hire. I feel like I'm being set up for failure my girlfriend even told me she is afraid that if I return to work now I will end up back in the hospital. Any advice?


  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    The only thing I can comment

    The only thing I can comment on is lung health.  Did they send you home with a spirometer for lung exercise?

  • Christy76
    Christy76 Member Posts: 30
    Yes the did. That was back in

    Yes the did. That was back in July of last year. I used it as directed.

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    Hi there

    I am sorry that you are suffering the after effects from treatment.  I was going to say something glib, like, welcome to being post NED, but that is just cruel when you're so miserable.  But, what I am going to say, wont be much better.  

    The fact is, there are many side effects from Cancer treatment that just don't go away, ever. Its a matter of working with them, around them, or trying to see - and this can take months to years - if you can alevitate them or make them more livable.  Your Oncologist is there to treat the Cancer, and beyond that is basically not his problem. Now you could go to your GP, and see if he can help, especially with the bladder problem. 

    Oh, I really should back track here, and tell you how sorry I am that you suffered an embolism. That had to be truly horrifiying.  

    I was blessed to avoid the colostomy, so cannot offer any advice in that area.  

    I do have a fluctuating blood oxygen level, but it is over 90, and I am happy with that. I think Snap's idea about a spirometer is great. Any kind of exercise, even for the lungs, has got to be a help. 

    I've had bladder problems for many years, even pre-Cancer, because I have had eight abdominal surgeries and everything is pretty shot up in that area. I had to re-learn to control my bladder. Some of it was done while I was still cathed, but then I had to do some of those kegel exercises, and ALLOT of mind control. You wouldn't believe how much your mind controls. It is crazy! 

    I'm not sure if you are male or female, so the bit about kegels won't be much help if you are male. 

    As for work, I guess it depends on what you are looking for.  I found a job in retail, part time, because that is all I needed. I laid it all out to my boss, just what my problems were that would possible effect my work - like my uncontrollable bowel.  I work alone in a shop, so when it happens, I have to run, leaving the shop open and empty or with a customer. My boss was very understanding, and said 'whatever works'. I also drop things - money, ice cream, bottles - all of the time, becasue of the neuropathy. I also have moments of chemo brain. One time, while the boss was there, I could NOT add up $15 and $30. I felt so stupid. He's like 'no problem, I understand'.  So, a job is possible, but I understand it could be hard finding one that works for you. 

    I have a list of side effect that I live with, deal with on an hour to hour basis. I just figure I can do it, I'm alive. 

    I hope that you find the help you need - like I said, try your GP - and can learn to accept some things that will never get back to normal, and start living life.  I hope NED for you, as I'm sure you will be getting a followup scan soon. 

    And keep on visiting here, we're all out to help each other. 



  • Christy76
    Christy76 Member Posts: 30
    I don't understand Trubrit.

    I don't understand Trubrit. Do you live in the U.S.? I'm transgender female if you're wondering. Before cancer I worked a blue colar job at a warehouse. I unloaded trucks, I lifted heavy items, I worked long hours and I rarely complained. My reviews were always good and other employees told me they liked the way I worked. None of that mattered when cancer struck. As soon as my FMLA was up they let me go. I was lucky to hold on to my insurance for a while. The doctors used it often and as I reached my deductible it payed nearly 100%. They make thousands and thousands off of me.

    Then my treatment was over and pretty much everyone walked away. The cancer doctor did his job but that's the problem it's just a job to him. He told me all about his recent trip to Europe and his upcoming retirment. Meanwhile I live in an apartment where when it rains the water gets inside the walls and gushes under the back door. As I sit here I pray I will be able to hold onto that apartment and continue to feed myself. I pray I can make the car payment because if I don't I will have no transportation. I can't go back to warehouse work I was told that by the doctor. With 40 million people applying for unemployment right now I don't see customer service as wanting me. Why hire a cancer survivor with a bag when you can hire one of the other million people waiting outside the door?

    I face the possiblity of homelessness with the added issue of a colostomy. God bless America.


  • Trubrit
    Trubrit Member Posts: 5,626 Member
    edited June 2020 #6
    Ah Christy

    Your situation sounds awful, and we should not have to live in such fear in this country - I am English, but I have lived in the States these past 30 years - in this day and age.  The poverty level was bad enough before COVID, and it has increased to a sorry state since. 

    Again, I have absolutely no idea about life with the bag. I know people do go to work with them, but I guess it all depends on the person and how comfortble they are with them.  I hope someone answers your thread who has a bag, as this is out of my range of experience.

    It would be easy for me to say - it gets better or Give it time. All of those kind of platitudes, but I will not, as I know that you are facing a crisis, and words are empty in such a situation. 

    Please don't give in to despair.  See if there is a Cancer support group near you, where you can find folks who may be able to help you, even if it is with hand's on advice.  Maybe it is time to look for work that you have not done before, something that will pay the bills. Yeah I know, easier said than done, but believe there is something out there for you. 

    As for your Oncoligist, he has done his bit, and hopefully you will not have to see him much longer.  Try the GP instead. 

    And just as an aside, becasue this is just me, and we are all different.  I went to job interviews with the attitude of 'why wouldn't you want to employ me. I'm reliable, honest, punctual, I have an accent, I'm happy, friendly, not too intellegent, but I've got some good points. I have medical issues, but I'll give it my best'.  

    Don't rule YOURSELF out.  Positive can take you a long way. 

    Hang around here for more folks to answer. The forum has been running a little slower, so hopefully folks will come along soon. My view is only one view, and I know others will have more qualified input. 

    Hang in there!



  • AnneO1965
    AnneO1965 Member Posts: 182
    edited June 2020 #7
    Hi Christy..  How long ago

    Hi Christy..  How long ago was your surgery?  When I first got the dreaded bag, it took about a month before my output leveled out. I'd go 2 or 3 days with nothing, then for the next 3 or 4, having to empty multiple times a day.  Now I'm good for 2 or 3 days before I have to change it.

    My oncologist isn't very helpful either with the aftermath of treatment and all the side effects. However, my GP was  a godsend. She gave me something for the neuropathy, something for the depression and something for the runs. Talk to your GP, he/she is more invested in your overall health than your oncologist is.

    Now... For the financial part, have you applied for disability? It took me almost 2 years to get it, but I finally did. Also, depending on where you live, you can apply for Medicaid. Where ever you are getting treatment, they should have a social worker than can help you find out what you qualify for. Please consider talking to one.

    I am so sorry you are going through all of this. Having to deal with financial worries while worrying about whether you are going to live or die sucks. Please let me know if I can be of any help to you.