Take a deep breath ...

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Daisy13
Daisy13 Member Posts: 43 Member
in Colorectal Cancer #1
A spam message I read today brought forth an old message thread from 2012.  There were many messages in the thread ... but I am sharing this one from former board member Devotion10 that many old timers will remember.  I have cut and pasted her message below because it is relevent to the journey of many here and I think it may be helpful. Peace ~ Daisy

 


Please do not waste any of your emotions looking backward or trying to cast blame on what might have been a missed diagnosis. You are here now and it will simply just eat at your heart. You need your strength and energy here in the present. 

Regarding what the second oncologist said about former doctors missing your husband's initial diagnosis ... it really is just impossible to know this. I am not sure it is helpful for a doctor to diagnose in retrospect without ever treating your husband at that time. The fact is, cancer is often not easily diagnosed unless there is a mass that can be detected in a CT/PET scan, an elevated CEA blood test, or is visually confirmed by a colonoscopy biopsy.

You are both understandably very sensitive and your concern and fears will make you try to identify an enemy ... in my opinion, it is not the former doctors and it is not chemotherapy, it is the cancer. You will need both your strength and courage to move forward now, not look backward in blame.

Regarding doing chemotherapy at this point ... you have the same two choices everyone does. 

Your husband can be treated with the suggested chemotherapy as an added assurance that if the cancer cells that cannot possibly be detected at this point, but may be already within his system, are destroyed. There can be side effects that are unpleasant both during treatment and after. It may save his life and it may not.

or

Your husband can refuse the chemotherapy and take the chance that there are no cancer cells circulating in his system now even though clear margins were obtained in surgery. He could live cancer-free for the rest of his life and never have the unpleasant treatments. He could use the opportunity instead to strengthen his body and his immune system and change his life style to a focus on health. He could make this decision and he may be one of the lucky ones.

It is such a personal decision and there is no right or wrong decision, but one must be sure enough of whatever decision you choose to live with the potential consequences. 

My husband was diagnosed stage one and was scheduled for colon resection in 2009. I sent his pathology slides all over the country seeking a colorectal surgeon that would say maybe a less invasive surgery could be tried. We finally found one and travelled across country so that instead of a colon resection, a transanal excision could be done. Clear margins were obtained and no cancer found in the immediate lymph nodes during this surgery. Afterward, we again bucked the advice we were given for follow-up radiation/chemo and chose instead to have him under surveillance with CEA testing and CT scans.

One year later, his CEA rose suddenly and a PET scan revealed that his cancer had returned to the original site and had also simultaneously spread to his liver and lungs -- he had gone from Stage One to Stage Four in twelve months. At this point, my husband's cancers are inoperable. He has made the decision to treat his cancers with chemotherapy and hold the beast at bay for as long as possible.

Each choice we made freely. We gambled and it did not work in our favor. We have not looked back with regret. It would be too easy to thrash about with what if we had done this or that ... the point is, we made our decisions and we felt in control because we made our personal choices. This is ultimately what you will do. Your heart will tell you and if you make your choice with free will and conviction you will be able to live with whatever your decision brings in the future.

Chemotherapy is not easy, but I can tell you that my husband worked consistently during his treatments since January 2010 and has only retired a month ago. These treatments can and do wreck havoc on the body and they also can prolong life. Each individual must determine the quantity versus quality life issues at each step of treatment.

I wish you both the very best. I read your pain and fear in your posts. Try to not delve in the past, forget about blaming previous doctors or second-guessing past diagnoses. You are here now and you have some choices to make together. Ultimately, your husband will know in his heart what he wants to do. You can read or be told all the statistics and percentages in the world but, each individual is different.

Take a deep breath. You are both alive and it is quite likely that you can love each other for many, many years to come.

Best to you,

Cynthia

Comments

  • NewHere
    NewHere Member Posts: 1,427 Member
    #2
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    Thank You

    For (re)posting that.  Really wondeful post and I am sitting here having read it more than once.

  • LindaK.
    LindaK. Member Posts: 506 Member
    #3
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    Thanks

    This has helped me too.  My husband was diagnosed in December 2012 as stage II.  He had the choice to do chemo or not.  My daughter and I encouraged him to do whatever he could to be "cured".  He did everything every doctor recommended, 12 rounds of Folfox and then 4 months after chemo ended, it was back in a different spot.  More surgery, more chemo and then spread to his lymph nodes.  New drugs added but other physical problems made more chemo impossible.  He passed away 23 months after diagnosis.  He probably only had 2 good months in that 23 months.  Looking back, I don't know what was best or what we could have done differently or if it would have mattered in the end.  I do know he gave it his all and so did I.  I have to be at peace with that, otherwise, I would drive myself insane.  Thanks for sharing this

    Linda

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #4
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    LindaK. said:

    Thanks

    This has helped me too.  My husband was diagnosed in December 2012 as stage II.  He had the choice to do chemo or not.  My daughter and I encouraged him to do whatever he could to be "cured".  He did everything every doctor recommended, 12 rounds of Folfox and then 4 months after chemo ended, it was back in a different spot.  More surgery, more chemo and then spread to his lymph nodes.  New drugs added but other physical problems made more chemo impossible.  He passed away 23 months after diagnosis.  He probably only had 2 good months in that 23 months.  Looking back, I don't know what was best or what we could have done differently or if it would have mattered in the end.  I do know he gave it his all and so did I.  I have to be at peace with that, otherwise, I would drive myself insane.  Thanks for sharing this

    Linda

    Loving you!

    I think of you often, Linda, and thought of you when I read this thread. There isn't a quick fix when you lose someone you love, and for you, the pain is still too close. Don't rush yourself, but, a little thing like a post can help you on the road to heal.

     

  • LindaK.
    LindaK. Member Posts: 506 Member
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    Trubrit said:

    Loving you!

    I think of you often, Linda, and thought of you when I read this thread. There isn't a quick fix when you lose someone you love, and for you, the pain is still too close. Don't rush yourself, but, a little thing like a post can help you on the road to heal.

     

    Thanks

    Awww, so sweet of you Sue!  I am healing, it's tough, but I have to go through it.  No avoiding all the hard times, but I am still sad often.  So sad to hear of any suffering from cancer.  It sure seems like there should be better treatments, cures, etc. with all the time and money spent on cancer.  I did not hear one word from any of his oncologists' staff (2 different places, 2 different hospitals) after he passed.  He's just another number to them, on the losing side I guess.  We had such hope at first and put all our trust in them.  I think they need a lesson in grief and bereavement.

    Linda

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #6
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    LindaK. said:

    Thanks

    Awww, so sweet of you Sue!  I am healing, it's tough, but I have to go through it.  No avoiding all the hard times, but I am still sad often.  So sad to hear of any suffering from cancer.  It sure seems like there should be better treatments, cures, etc. with all the time and money spent on cancer.  I did not hear one word from any of his oncologists' staff (2 different places, 2 different hospitals) after he passed.  He's just another number to them, on the losing side I guess.  We had such hope at first and put all our trust in them.  I think they need a lesson in grief and bereavement.

    Linda

    Compassion

    I asked my Rad Onc how he handled the emotions with losing patients so often. He said he just sees it as part of the cycle of life. I guess he doesn't get invested in any of his patients, and maybe thats a good thing. Can you imagine working in a job where 3/4 of your patients die? I think maybe they distance themselves for their own mental well being. 

    Keep heading up the road, you will find a place where your memories live and you can enjoy all that your life offers. 

    Sue - Trubrit

  • jen2012
    jen2012 Member Posts: 1,607 Member
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    LindaK. said:

    Thanks

    Awww, so sweet of you Sue!  I am healing, it's tough, but I have to go through it.  No avoiding all the hard times, but I am still sad often.  So sad to hear of any suffering from cancer.  It sure seems like there should be better treatments, cures, etc. with all the time and money spent on cancer.  I did not hear one word from any of his oncologists' staff (2 different places, 2 different hospitals) after he passed.  He's just another number to them, on the losing side I guess.  We had such hope at first and put all our trust in them.  I think they need a lesson in grief and bereavement.

    Linda

    I felt let down from not

    I felt let down from not hearing from my moms surgeon when she passed as we had spent several hours talking by phone and email and he seemed to really care and want to help her.  I felt like he was invested and wanted her to survive.  not a word....I guess it would be difficult to do their job if they got too close.  I know I wouldn't be able to do the job, it would destroy me.

  • LindaK.
    LindaK. Member Posts: 506 Member
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    jen2012 said:

    I felt let down from not

    I felt let down from not hearing from my moms surgeon when she passed as we had spent several hours talking by phone and email and he seemed to really care and want to help her.  I felt like he was invested and wanted her to survive.  not a word....I guess it would be difficult to do their job if they got too close.  I know I wouldn't be able to do the job, it would destroy me.

    We were invested in them

    I assumed they were invested in us (him the patient).  I was at every appointment, treatment, hospitilization, etc. with him.  I talked to them more than he did.   Of course they know people die from cancer, but it seems they could have sent a card or made 1 phone call.  Another thing that irritated me was his "Mychart" accound was shut down the day he died but for weeks and months after I was getting phone calls reminding him of appointments, etc.  One call was to remind him in December for his annual colonoscopy.  Seriously, he died from colon cancer you idiots!  When I called his GI doctor's office a few months ago to speak to someone about his biopsies for his daughter's GI doctor, they said "Well, XXXXX (my husband's name) will have to call us to release that information' so I said "Well, he's dead'  We had already called them once after the colonoscopy reminder to let them know he had passed away.  Are all these computer systems that dumb?  I mean they are still in the business of helping people aren't they?  The only doctor I ever heard from personally was the palliative care doctor from the hospital, a truly kind and gentle man. 

    It's hard enough to get through this grief without every step being made more difficult with nonsense from these doctor's offices.  Never heard from his home hospice nurse either, no great loss since we didn't really care for her.  My husband used to ask for a different nurse to come since he connected much better with one in particular.  I admire anyone who works in this field, I know I couldn't do it either.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
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    LindaK. said:

    We were invested in them

    I assumed they were invested in us (him the patient).  I was at every appointment, treatment, hospitilization, etc. with him.  I talked to them more than he did.   Of course they know people die from cancer, but it seems they could have sent a card or made 1 phone call.  Another thing that irritated me was his "Mychart" accound was shut down the day he died but for weeks and months after I was getting phone calls reminding him of appointments, etc.  One call was to remind him in December for his annual colonoscopy.  Seriously, he died from colon cancer you idiots!  When I called his GI doctor's office a few months ago to speak to someone about his biopsies for his daughter's GI doctor, they said "Well, XXXXX (my husband's name) will have to call us to release that information' so I said "Well, he's dead'  We had already called them once after the colonoscopy reminder to let them know he had passed away.  Are all these computer systems that dumb?  I mean they are still in the business of helping people aren't they?  The only doctor I ever heard from personally was the palliative care doctor from the hospital, a truly kind and gentle man. 

    It's hard enough to get through this grief without every step being made more difficult with nonsense from these doctor's offices.  Never heard from his home hospice nurse either, no great loss since we didn't really care for her.  My husband used to ask for a different nurse to come since he connected much better with one in particular.  I admire anyone who works in this field, I know I couldn't do it either.

    *Deep sigh*

    Ugly stories, Linda. These things SHOULD NOT HAPPEN.  If you still wern't in a deep state of mourning, I would suggest some sharp sarcastic reply, and in time you may indeed have to resort to that; but a nice blunt 'He is dead' with a significant emphasis on the dead, should at least shock them, though I fear it will do nothing to solve the problem of their poor record keeping. 

    I am so very, very sorry for all of this. I wish you could just mourn the loss of your hubby, without having to deal with any crap.

    I do agree with you that a card, even if sent from the office manager, would not be a hard thing to do. I work for a podiatrist, we have allot of diabetic or elderly patients that pass (though nothing on the scale of an Oncologist), and a card and flowers are always sent, so I know it can be done. 

    You are in my thoughts and prayers.

    Sue - Trubrit

  • LindaK.
    LindaK. Member Posts: 506 Member
    #10
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    Trubrit said:

    *Deep sigh*

    Ugly stories, Linda. These things SHOULD NOT HAPPEN.  If you still wern't in a deep state of mourning, I would suggest some sharp sarcastic reply, and in time you may indeed have to resort to that; but a nice blunt 'He is dead' with a significant emphasis on the dead, should at least shock them, though I fear it will do nothing to solve the problem of their poor record keeping. 

    I am so very, very sorry for all of this. I wish you could just mourn the loss of your hubby, without having to deal with any crap.

    I do agree with you that a card, even if sent from the office manager, would not be a hard thing to do. I work for a podiatrist, we have allot of diabetic or elderly patients that pass (though nothing on the scale of an Oncologist), and a card and flowers are always sent, so I know it can be done. 

    You are in my thoughts and prayers.

    Sue - Trubrit

    Thanks!

    for understanding Smile

  • Joy1216
    Joy1216 Member Posts: 290 Member
    #11
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    Some docs do care

    I was really impressed with my allergist. She called me after I got of the hospital to see how my colon resection went. 

    Joy

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