drained emotionally

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iluvmms
iluvmms Member Posts: 134 Member
edited March 2014 in Colorectal Cancer #1
I haven't posted much in a while since my surgery. Surgery was April 6th nad today is my first day back to work. I am really confused because they told me I am "cancer free" now, but they want me to do 6 months of chemo still as an insurance policy. Is this the standard protocol?

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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Christy:)
    Getting back to work is always like starting back on the very 1st day, isn't it? Takes a little time to get back in the swing of it, but just go steady and smooth until you get your footing back:)

    This is certainly a protocol done by many folks here on the board. The theory is that the treatments will eliminate any stragglers still circulating in your blood stream.

    It seems to be an "insurance policy" as you say, to provide more protection from recurrence. With all that you have been through to get to this point, it may be prudent to consider this course. They may throw the big guns at you right away - and then could possibly change or adjust based on how you deal with the side effects.

    It's hard to say how it will go, as we all take it so differently.

    I believe in the old saying, "It's better to be safe than sorry."

    After my original rectal resection, my onc made the decision for no chemo follow-up. I was very early on with Cancer and did not know what I knew today. He told me if I was his son, "I would not give it to you."

    I was so relieved, because I was wiped out from the surgery, the radiation and the prior chemo, and I believed him verbatim. Some time went by and it went to my liver and then the battle really got intense. RFA, CyberKnife, Folfox, Avastin, Xeloda etc.etc.

    I look back to that moment (5-years before the board and had no experienced folks to talk to) and realized that was a critical juncture in my battle and it could have cost me my life. In looking back, the onc himself, thought maybe he had made a mistake. We probably should have done some chemo.

    So, I can definitely understand your feelings and feel the conflict in you on what you should do. It's all hindsight now for me, but in you, I can see you at the same point I was. And all I can think of to say, is to give it everything you have now, while you have the upper hand. Don't let it gain another foothold on you. Take care of business now and you may not have to look back over your shoulder...wondering.

    We'll walk with you through this next phase. You're going to be a Sir Spheres success story and a big inspiration to the many on the board, who may follow your course.

    And don't worry about "cancer free" now. Just take each day as it comes. Take the goals in smaller increments: 1-year, 2-years etc. When you reach 5 years with no recurrence, that is the milestone that we all want to reach.

    Until then, you have no evidence of disease today and this chemo will give you some extra bullets to fire in your battle. And with you in the system, you will be monitored and scanned frequently and if anything pops in, you will be way out ahead of it.

    I'm pulling for you, Christy:)

    P.S. And if our beloved Patti were with us, she would tell you to go, go, go! She was looking for you to be the flag bearer, so go and give us all hope!

    -Craig
  • coloCan
    coloCan Member Posts: 1,944 Member
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    Apparently. After my colostomy I did postop Folfox
    Chemo after surgery allegedly is done to ensure as much as possible that tumor and any remaining cancer is annihilated as cancer is so insidious you can never be certain any remains after operation.....steve
  • John23
    John23 Member Posts: 2,122 Member
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    Decisions...


    Re:
    "they told me I am "cancer free" now, but they want me to do 6 months
    of chemo still as an insurance policy. Is this the standard protocol?"


    I suppose it is, but it is entirely your choice to do as they say,
    or do as you feel best.

    Anyone given this choice should ask their specialist(s) this:

    1. Can they tell me for certain, that one or more cancer cells are still inside me?
    2. Can the chemo find and kill an individual cancer cell in it's earliest stage?
    3. Can they guarantee me that the chemicals will not cause a second, different cancer?
    4. Can they guarantee me that the chemicals will not cause any permanent problem?
    5. Can they guarantee me that chemotherapy will guarantee me I won't have a recurrence?

    No-one should make any life-changing choices blindly, or accept another's
    opinion as the only valid opinion, regardless of the expertise or lack of
    expertise behind the formed opinion.

    It's -your life-; you needn't be part of an industrial experiment,
    or the supplier of cash for an already wealthy industry.

    Chemotherapy is only one way to fight cancer, so make your
    choices as instinctively as you can; trust yourself and no-one else.

    You'll do fine, regardless!

    Better health to you!!

    John
  • iluvmms
    iluvmms Member Posts: 134 Member
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    John23 said:

    Decisions...


    Re:
    "they told me I am "cancer free" now, but they want me to do 6 months
    of chemo still as an insurance policy. Is this the standard protocol?"


    I suppose it is, but it is entirely your choice to do as they say,
    or do as you feel best.

    Anyone given this choice should ask their specialist(s) this:

    1. Can they tell me for certain, that one or more cancer cells are still inside me?
    2. Can the chemo find and kill an individual cancer cell in it's earliest stage?
    3. Can they guarantee me that the chemicals will not cause a second, different cancer?
    4. Can they guarantee me that the chemicals will not cause any permanent problem?
    5. Can they guarantee me that chemotherapy will guarantee me I won't have a recurrence?

    No-one should make any life-changing choices blindly, or accept another's
    opinion as the only valid opinion, regardless of the expertise or lack of
    expertise behind the formed opinion.

    It's -your life-; you needn't be part of an industrial experiment,
    or the supplier of cash for an already wealthy industry.

    Chemotherapy is only one way to fight cancer, so make your
    choices as instinctively as you can; trust yourself and no-one else.

    You'll do fine, regardless!

    Better health to you!!

    John

    Thanks for the input Craig
    Thanks for the input Craig and John. I am so tired still and in pain still I am just afraid it is going to really kick my butt.

    I really miss Patti, we were go through this together. We talked on the phone or texted each other after each step. I ws in the hospital when all this happened to her. Makes me very sad. I am just sad altogether today. I just cry every time some says how are you. I am an emotional basket case. I really do not think I was ready to come back to work, but I was out of time.

    Christy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    iluvmms said:

    Thanks for the input Craig
    Thanks for the input Craig and John. I am so tired still and in pain still I am just afraid it is going to really kick my butt.

    I really miss Patti, we were go through this together. We talked on the phone or texted each other after each step. I ws in the hospital when all this happened to her. Makes me very sad. I am just sad altogether today. I just cry every time some says how are you. I am an emotional basket case. I really do not think I was ready to come back to work, but I was out of time.

    Christy

    I Wanted to Add
    I did chemo and stayed on the job as much as I could during treatment. I would do the chemo on Fridays so I had Sat/Sun to help with the effects. Then, I would miss Monday and sometimes Tuesday and then work out the remainder of the week.

    It was not the easiest thing to do, but having my employer be aware of what I was taking and the effects gave them the understanding of why I was missing that work time.

    So, talk to your employer if you decide to do this. And another thing that might help you, if you stay on the job for 30-days, and were to have to "go back out" out of the office, the clock should be reset, so that you could go back out on disability and start back from a new beginning timetable, instead of having to resume where you left off.

    STD should be 3-months, with LTD, beginning in the 4th month and beyond. So if you wait 30-days, you might just gain 3 more months of STD, so you could do your treatments and not have to work for another stretch of time.

    Work can make it easy for you, or they can make it hard. I've personally had it both ways, at the same time, but with 2 different bosses. I hope your place will be ease with it. I found that being upfront with them about my illness, along with educating them on what was happening and what to expect, gave them the expectation level of what they would be up against, so they could better plan the work schedule.

    I know you're tired - and I know you hurt. You might ask the onc how long out you could go before having to start treatment. Maybe another month before getting started, would allow you to settle into work some, and give you some more days to feel a little better.

    I wish I had the easy answer for you. You don't have to do this tomorrow, but if you were going to do it, I would not wait for too long a period - you want to strike while the iron is hot, so to speak.

    I know you and Patti were close (we were too) and I know she was looking to you so much for her hope and inspiration, because of the paths you were both walking down. I know she so much wanted to be where you are now. I just don't want to see what you have worked so hard for, be compromised...I want to see you win!

    I'm here if you ever need to talk, or have any questions, or just need a hug. All of us will be here with you and for you.

    Just words right now, but I've been down this path and it's hard, but I know that you can do it. You've come so far, with great success. Don't rush, but work it through in your mind, until you find a peace with your decision.

    (((CHRISTY)))

    -Craig
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    Christy,
    Christy,
    **** did chemo after his first surgery. They say he will do it again after this surgery. I know that after all you have been through, including losing Patti, you are drained. Looking into STD and LTD is a good thing. I am sorry you are having such a hard time but it is understandable.
    Thinking and praying for you.

    Aloha,
    Kathleen
  • vhtqm1
    vhtqm1 Member Posts: 107
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    very common;

    the goal and or reasoning of a second round of chemotherapy is to attempt to kill any systemic cancer cells. there are microscopic cancer cells still floating around in your body either due to tumor disintegration and or the original source. there is research that confirms this round of treatment is beneficial. unfortunately cancer is a disease which keeps us on our toes and we have to think proactively instead of reactively. very glad your surgery went so well and whatever decision you make were all here for you.

    ed
  • iluvmms
    iluvmms Member Posts: 134 Member
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    vhtqm1 said:

    very common;

    the goal and or reasoning of a second round of chemotherapy is to attempt to kill any systemic cancer cells. there are microscopic cancer cells still floating around in your body either due to tumor disintegration and or the original source. there is research that confirms this round of treatment is beneficial. unfortunately cancer is a disease which keeps us on our toes and we have to think proactively instead of reactively. very glad your surgery went so well and whatever decision you make were all here for you.

    ed

    ltd and std
    How do you get STD or LTD? is this through work, because I did not have that at work, or is it through SSI??

    Christy
  • geotina
    geotina Member Posts: 2,111 Member
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    iluvmms said:

    ltd and std
    How do you get STD or LTD? is this through work, because I did not have that at work, or is it through SSI??

    Christy

    LTD, etc.
    It is my understanding that long term disability and short term disability are an employee benefit through the employer. Where I am at, no such thing. If you are out sick, and have not accumulated any sick time, vacation time, then your time is your own meaning not paid.

    Tina
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    thinking of you
    Hi,

    Boy, I wish it were possible for you to not have to go back to work already- definitely look into the short and long term disability. I think it could be through your employer initially and the long term would be through social security disability. I was a teacher and so I didn't qualify for social security disability, but I am getting a disability through STRS (state teachers' retirement system), which is what I put into instead of social security.

    I know you're sore, tired, and emotional. I am saying a prayer for you now as I type this- for things to work out with what you need to do for work, disability, etc., as well as with starting up post surgery chemo.

    You take care of yourself- maybe seeing a counselor or being in a weekly local cancer support group could be of help to you. Hugs to you- keep in touch with the board here- we all care about you.

    Hugs and prayers,
    Lisa