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Thread: "Negotiating" with Cancer

  1. #11
    Lori, I didn't think for a moment that you were being judgemental, I was just worried that you thought I was, which is most definately not what I intended. The written word is sometimes easily misinterpeted and I'm not always very good at getting my message accross in the way I mean it. Just cause it makes sense in my head doesn't mean I manage to explain it to others. I'm sorry to hear you are still carrying so much anger, I can feel it in your posts, I hope you can find peace someday.

    The world would really be a boring place if we all thought and acted and felt the same about everything.
    Wishing you peace,
    Nat.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  2. #12
    Quote Originally Posted by Ababb View Post
    NatalieC, my thoughts and emotions are right where yours are. This disease can be fought but can't be beat...not yet anyway. Fighting takes a lot of energy and I wanted to see my mom spend the energy on living life not fighting death. Death is imminent. We will all face it one day. Life is limited and meant to be lived. I guess for some the question is: Is fighting living? For some, it may be.

    Thanks for giving me something to think about ladies. Much love to all of you. Each one of you is inspiring! Anj.
    Thanks Anj,

    I wish I could put it as succinctly and eloquently as you have - thank you!. That is exactly how I feel about it at the moment. It is great to get such varied perspectives here.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  3. #13
    Take our words. We don't mind. It's not like we had an original thought. Use what we already know. So what is your mom going to do? At this point. Have you talked to her about it? Jody
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

  4. #14
    Quote Originally Posted by april51 View Post
    I'll write more later. It is late. Cancer, don't come at me punching because, I too, will pick those boxing gloves back up and start swinging. There are not enough words in the language we have. I can and will 'fight'. But it is not a good word right now. Live and enjoy is what I am trying to do. Jody
    Once again it is late here. I have been on and off all day and couldn't come up with the words I want to say. I really do want to say something about the topic as I think it is one of the most important ones on the the forum. Back later. Jody
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

  5. #15
    Administrator Top User ChemoMan's Avatar
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    Hi All

    This is a fantastic thread, humbling to read and thought provoking.

    I Like it so much I am going to make it a sticky....for a while at least.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #16
    Quote Originally Posted by april51 View Post
    Take our words. We don't mind. It's not like we had an original thought. Use what we already know. So what is your mom going to do? At this point. Have you talked to her about it? Jody
    Hi Jody, at the moment it's a no brainer. The benefits of chemo have far outweighed the negatives at the moment - it is a clear nett gain. It's pretty Black and White at the moment.

    The "grey" times are still a little further in the future for us yet, how much further I don't know as she has only had 1 cycle of chemo and RT is yet to start, so we won't know for a while if it has been successful. The only side effect was a coulple of episodes of diarrhoea on the third day. Small price to pay at this stage for the chance of months of improved quality of life. I think when the time comes in the "negotiation" where benefits are clearly outweighed by the treatment, then mum will be at peace with a decision to discontinue treatment. It will be my Dad that will struggle with that concept.

    My mum has always has very strong feelings about quality of life and many years ago organised living wills for her and dad, in case end of life decisions needed to be made, as she did not want to be kept "artificially"alive.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  7. #17
    Senior User
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    When did "anger" become a bad thing?

    I am not sorry to be angry. Yes, it takes energy that could be deployed in other ways, and yes, it can, if you let it, be crippling. However, it can also motivate, invigorate, and call attention to those unforgivable transgressions that count on peaceful surrender to the inevitable, and the human need to find an equilibrium of spirit that will serve their everyday lives.

    It has always astounded me that some people find a need to "forgive" those who have completely destroyed their lives. Yes, I can forgive those who have trespassed against me, as I expect their forgiveness, but I will be hanged if I will forgive someone who has deliberately or recklessly hurt me or mine. A killer does not merit any part of my understanding.

    I have, and will always support a person's right to choose how they live and how they die, but I am not a real fan of "go(ing) quietly in to that dark night". I "rage at the dying of the light". I admire the hell out of Jody, and others, who can find a place of peace and acceptance, but I question if it "real" or if it is, at it's most basic, another weapon in the fight.

    If a person will cut off his own arm with a pocket knife to survive, how is it possible to thwart the will to live? Is it really possible to "give" and be okay with it? I can, in no way, have a real grasp of that until and unless I am wearing those shoes, but I can't help but wonder if you ever truly come to terms with death.

    I completely don't mean to say that someone should not attempt to find that place of content, I just don't want the others here, who feel differently, to feel somehow "lesser" because they can't.

    Natalie, I understand that you believe you have found a comfortable place, and I love that you wish the same for me. However, please don't be afraid to be angry. It's okay. You won't break, you just bend a bit. It is not a weakness.

    Refusing to fight a battle you can't win has no special value, it is just a decision that is made based on feelings, not net gain or loss. There is no shame in losing if you believe that you have given your best. I think, at a certain point, one can say that dying would be preferable to suffering, I just don't know that anyone can anticipate when that might happen in any given situation. I also can't imagine that it wouldn't change daily. My mom had always said she wouldn't want chemo but, once the radiation "worked" , and she felt a little better, she changed her mind, and was going to give it a shot.

    This place where you are right now is a self-protective construct, and it is good, for now. I am just not sure it is any healthier or reasonable than my "anger". Feelings are never wrong, they just are. Don't be afraid of them.

    Hugs,

    Lori

  8. #18
    Administrator Top User ChemoMan's Avatar
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    Hi

    When did "anger" become a bad thing?
    it always was a bad thing. it is a negative emotion. It holds you back from moving forward and it leads you to making poor irrational decisions out of spite. It causes you to become self centered and disregard other peoples feelings. if left unchecked it will eat at your soul and turn you into a bitter person That's why we have anger management councilors to help people get over their anger and become better people for it. I see anger every day just driving to work. Road rage is becoming commonplace on our roads these days. It seems like everybody is angry and it saddens me no end. Try and tell me that's a good thing.

    Why get angry at cancer? Its not even a disease in the normal sense. Its just normal cell biology gone awry due to a small glitch in the genetic code. It is not a sentient being its not even an entity of any sort.

    Re 'Fighting' cancer. How can you fight something that has already won the battle. We fight disease with our immune systems and this is not a conscious act but rather an automatic response. So once cancer has escaped detection by the immune system you have already lost the only battle you can fight. After that you rely and on medical means to smash it into submission, the trouble there is that as cancer is you, your cells, the treatment will also smash your body in the process. There is also no fighting on your part in that process, you do nothing other than sit there and let the medicos pour poison into you and zap you with ionizing radiation.

    I don't know where this Fight and battle terminology came from but I think its about time we got over it. I for one will try to squeeze it out of my postings here as I am as guilty as everyone else of using it. There is no fight to win anyway as we are all going to die.

    When you get cancer you spend a lot of time contemplating death. I already made a decision years ago that I would go for treatment twice and twice only. Thankfully that second round has not come up but its never far from my mind or the realms of possibility. No way I will face treatment 3 times, whats the point other than burden the health system financially in a vain attempt to hang onto a few months. I have read and heard that 80% of the monies spent on health in developed countries is spent on the last 2 years of life. That's why health systems are burdened by mounting costs and struggling to cope.

    Jody is right there comes a time when we should relax and enjoy what time is left for us. We are not here for a long time but a good time is a worthy motto to take on board when faced will the inevitability of terminal cancer. If you really want to use the 'fight' analogy then you could say that Jody is fighting for her quality of life and her happiness here on Earth. I think that is a laudable approach to her situation and it is one I will follow also.

    Cheers
    Last edited by ChemoMan; 11-11-2012 at 05:27 AM.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  9. #19
    Administrator Top User Didee's Avatar
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    My 2c. My comments are not directed at any poster on this thread but my input on how I feel after reading it..

    My mother passed away 3 years ago after her bladder cancer metastasised and the effects of radiation killed her.
    Am I pleased it did? You bet because the path she would tread for the following 18 months or so would have been horrible.
    I was too far away to be her carer but my sister was and she kept me totally in the loop.

    There was no prolonged anger from any of us. There was no point at all in being angry as we could not change the situation.
    My whole family is brought up with the adage (from mum initially) that if you can not change a situation then you have to change how you cope and deal with it. You cope in the best way for YOUR coping mechanisms whether anger, acceptance or our family's preference of black humour, acceptance and always find time to have a laugh at it. I flew up there and had 5 days with her before she passed and we had many laughs.

    Fast forward 9 months to my own diagnosis.
    No real anger either from any of us.

    When I was told by phone my next comment to the doc was OK, (big relief to finally have a label) how to we fight this. (I happen to like the word fight as it has many connotations.)
    I named it beastie..no capital letter as it was far handier to call it that and diminish it away from the word CANCER.
    The word cancer is so frightening whilst the word beastie is dismissive. My preference anyway.

    Am I still going to have some fun if I decide to stop treatment if I relapsed and one or two didn't work?
    OOOO yea.

    I also feel that when I pass that I am the winner as beastie goes down with me, not the other way around. If the host goes down then so does the parasite.
    Last edited by Didee; 11-11-2012 at 04:27 AM.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  10. #20
    Senior User
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    Exactly my point Chemo Man, anger isn't bad, it's how you manage that anger that tells the story of your life.

    If African Americans hadn't been angry at being treated like second class citizens, and having to use "black only" bathrooms, then the civil rights movement would have lost to the idea that how it is is how it should be. If women hadn't been angry at being denied the vote, or earning less than their male counterparts, the fight for equal rights would have bitten the dust of acceptance of the status quo.

    Yes, anger can be and is a good thing. Anger fuels change, it motivates the doctors and researchers who "battle" to be able to one day say "I can help you win". Choosing to fight a fight that can't be won allows clinical trials and new medicines and courses of treatment that wouldn't be available if we all bowed our heads and accepted inevitable.

    People like Dan, who constantly pushed that envelope, are the ones who might have helped my children, if they ever have to face this disease. Without those "battles", many of the members of this forum, like Emily's Mike, would not have the medicines they need to prolong quality and quantity of life,and maybe even survive.

    It was never my intention to tell anyone that they were wrong to say enough is enough. Everyone should have the benefit of finding that place of content. Acceptance is an hospitable place. But not everyone is able to get there and I wanted them to know that being angry was okay, and that choosing to fight didn't make them less noble or somehow deluded.

    Don't tell me I can't be angry at a disease. I don't care if it's reasonable or rational. It's how I feel. Don't tell me that I shouldn't fight a battle I can't win. Understand that I know that I can't win, but I choose to try anyway. Tell me that yes, every day science is discovering new ways to "fight" disease, to fool our immune systems into helping us. Tell me that the possibility of a new AIDS vaccine is a direct result of people choosing not to accept their "fate".

    Every person in this forum has their own unique journey to travel and none of us has the right to judge the decisions they make, or the paths they take. Embracing those differences is what unites us in reaching a common goal - comfort. Whatever form that takes.

    Questioning and wondering isn't disrespectful. Exploring and sharing our feelings is what this place is about. Let's not make it about right or wrong.

    Lori

 

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