› Forums › General Melanoma Community › Provocative question for all
- This topic has 39 replies, 8 voices, and was last updated 8 years, 9 months ago by
Polymath.
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- February 28, 2016 at 10:12 pm
Greetings fellow warriors,
Recent heartbreaking post by pookerpb, and others along with the lingering thoughts of inspirational fighter Artie, I can't get this question out of my mind. When is enough, enough? When do you finally say I am tired of being cut, pricked, biopsied, infused, drugged, radiated, and having your entire life revolve around Dr. appointments? Don't get me wrong. I'm not giving up anytime soon, but the frustration of going through treatment after treatment only to continue to get worse, does not give a person a lot of hope. My geographic isolation costs my family tens of thousands of dollars a year in travel expenses to see a specialist. When do you say the family financial considerations outweigh adding another few months, or maybe years to life? Compared to some on this board, I'm lucky, but that ever-present doubt, knowing its just a matter of time. Yes, perhaps the next treatment or clinical discovery will be the magic bullet, and that's what keeps you going, and at the same time you are always thinking, maybe not. Then there's the love of family, my goal since diagnosis was to just see my daughter graduate high school. These things keep you fighting. Still, I remain curious as to how others are facing up to these most difficult questions? I suppose pain management and overall quality of life probably drive much of the equation, and it is deeply personal. I know others must feel like I do, and I'm curious as to what you think.
Aloha, Gary
- Replies
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- February 28, 2016 at 10:55 pm
Gary, as you note–a personal question. And, there are no "real time" mentors to look to for advice. That said, occasionally, you can find insight in reading the personal accounts of others who have walked a similar path. To that end, I'd recommend the recently published When Breath Becomes Air by Dr. Paul Kalanithi. Available on Amazon or Audible.
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- February 28, 2016 at 11:45 pm
I absolutely adored this book! It is an incredibly well written and inspirational account by a neurosurgeon with lung cancer. He put into words so much of what we all think along this journey. I was bawling by the end. It’s absolutely worth the read! -
- March 1, 2016 at 6:06 pm
Thanks for responding and suggesting some of the reading materials where others have had to face,the same decisions, and document the experience. I hoped this provocative question would also stimulate a conversation within ourselves and loved ones, as we make our way through this journey.
Aloha, Gary
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- March 1, 2016 at 6:06 pm
Thanks for responding and suggesting some of the reading materials where others have had to face,the same decisions, and document the experience. I hoped this provocative question would also stimulate a conversation within ourselves and loved ones, as we make our way through this journey.
Aloha, Gary
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- March 1, 2016 at 6:06 pm
Thanks for responding and suggesting some of the reading materials where others have had to face,the same decisions, and document the experience. I hoped this provocative question would also stimulate a conversation within ourselves and loved ones, as we make our way through this journey.
Aloha, Gary
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- February 28, 2016 at 11:45 pm
I absolutely adored this book! It is an incredibly well written and inspirational account by a neurosurgeon with lung cancer. He put into words so much of what we all think along this journey. I was bawling by the end. It’s absolutely worth the read! -
- February 28, 2016 at 11:45 pm
I absolutely adored this book! It is an incredibly well written and inspirational account by a neurosurgeon with lung cancer. He put into words so much of what we all think along this journey. I was bawling by the end. It’s absolutely worth the read!
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- February 28, 2016 at 10:55 pm
Gary, as you note–a personal question. And, there are no "real time" mentors to look to for advice. That said, occasionally, you can find insight in reading the personal accounts of others who have walked a similar path. To that end, I'd recommend the recently published When Breath Becomes Air by Dr. Paul Kalanithi. Available on Amazon or Audible.
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- February 28, 2016 at 10:55 pm
Gary, as you note–a personal question. And, there are no "real time" mentors to look to for advice. That said, occasionally, you can find insight in reading the personal accounts of others who have walked a similar path. To that end, I'd recommend the recently published When Breath Becomes Air by Dr. Paul Kalanithi. Available on Amazon or Audible.
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- February 29, 2016 at 2:08 pm
Gary,
That really is a tough question. I’ve kind of set in my mind that I am going to fight until my last breath. Not for my own selfish preservation reasons but because I’m fighting for my kids not to lose their father. Having said that, no one really knows how they’ll react after weeks or even months of pain. You touched on it but pain management can be crucial to your will to fight. I think you have to have a mindset that you are going to give it the best you can and when you decide that’s enough you don’t view it as giving up or losing you view it as another decision that is in your’s and your family’s best interest. In a way I’ve viewed this battle with melanoma as what could be one of the last lessons I teach my kids. Life isn’t always fair but you keep moving on and whether you win or lose you do it with honor and dignity.
Brian
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- February 29, 2016 at 2:08 pm
Gary,
That really is a tough question. I’ve kind of set in my mind that I am going to fight until my last breath. Not for my own selfish preservation reasons but because I’m fighting for my kids not to lose their father. Having said that, no one really knows how they’ll react after weeks or even months of pain. You touched on it but pain management can be crucial to your will to fight. I think you have to have a mindset that you are going to give it the best you can and when you decide that’s enough you don’t view it as giving up or losing you view it as another decision that is in your’s and your family’s best interest. In a way I’ve viewed this battle with melanoma as what could be one of the last lessons I teach my kids. Life isn’t always fair but you keep moving on and whether you win or lose you do it with honor and dignity.
Brian
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- March 1, 2016 at 6:13 pm
Thanks Brian for your thoughtful reply. Those who reach a stage of debilitating pain, and whereby only powerful drug treatment is the only coping mechanism certainly have reason to consider the question that enough is enough. I'll keep fighting tooth and nail just like you, and for many of the same reasons. But when quality of life diminishes, I don't think I want my teenage daughter to see me wither away in a bed, drugged almost unconscious. I've done everything I can to "be normal" throughout my journey with mel. At times it was not easy. But my clinging to life, is not justified if it diminishes the lives of the ones I love.
Aloha, Gary
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- March 1, 2016 at 6:13 pm
Thanks Brian for your thoughtful reply. Those who reach a stage of debilitating pain, and whereby only powerful drug treatment is the only coping mechanism certainly have reason to consider the question that enough is enough. I'll keep fighting tooth and nail just like you, and for many of the same reasons. But when quality of life diminishes, I don't think I want my teenage daughter to see me wither away in a bed, drugged almost unconscious. I've done everything I can to "be normal" throughout my journey with mel. At times it was not easy. But my clinging to life, is not justified if it diminishes the lives of the ones I love.
Aloha, Gary
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- March 1, 2016 at 6:13 pm
Thanks Brian for your thoughtful reply. Those who reach a stage of debilitating pain, and whereby only powerful drug treatment is the only coping mechanism certainly have reason to consider the question that enough is enough. I'll keep fighting tooth and nail just like you, and for many of the same reasons. But when quality of life diminishes, I don't think I want my teenage daughter to see me wither away in a bed, drugged almost unconscious. I've done everything I can to "be normal" throughout my journey with mel. At times it was not easy. But my clinging to life, is not justified if it diminishes the lives of the ones I love.
Aloha, Gary
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- February 29, 2016 at 2:08 pm
Gary,
That really is a tough question. I’ve kind of set in my mind that I am going to fight until my last breath. Not for my own selfish preservation reasons but because I’m fighting for my kids not to lose their father. Having said that, no one really knows how they’ll react after weeks or even months of pain. You touched on it but pain management can be crucial to your will to fight. I think you have to have a mindset that you are going to give it the best you can and when you decide that’s enough you don’t view it as giving up or losing you view it as another decision that is in your’s and your family’s best interest. In a way I’ve viewed this battle with melanoma as what could be one of the last lessons I teach my kids. Life isn’t always fair but you keep moving on and whether you win or lose you do it with honor and dignity.
Brian
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- February 29, 2016 at 5:29 pm
An important, and, yes, deeply personal question that many have, and will, face. I can relate some of my experience – not as a guideline – but merely another “story” to add to the collective provided by this forum.
When I was at my physical, mental and emotional nadir due to the aggressiveness of my advanced Stage 4 disease, my wife hugged me and said “I don’t want you to leave.” Her choice of the word “leave” rather than “die” had a huge impact on my rumination and meditation on death which, naturally, was obsessing me at the time. Everything had been put in order and I had a referral for hospice, so all that was left was to accept the fact that no one gets out of life alive and, at some point, I, too, was going to walk out the door and “leave” the party. My horizons were closing in and I was gradually surrendering the concept of “future.” As uncomfortable as this was, it was also very liberating. The concept, and my perspective, of time took on a whole new dimension. Important things became unimportant, and some unimportant things blossomed into all-encompassing, rewarding experiences. If fate had guided me out the door at that time, I would have been ready to “leave,” without a fight, without an argument.
At that point, a different door opened, and I entered the nivo/ipi trial. I happened to be a “complete responder,” and within four months my tumors were undetectable (my wife calls me the luckiest unlucky person she has ever met). That was two years ago, and I remain NED.
Everyone approaches the reality of impermanence differently. There is no right way and no wrong way. And rarely, is there a comfortable way…
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- February 29, 2016 at 5:29 pm
An important, and, yes, deeply personal question that many have, and will, face. I can relate some of my experience – not as a guideline – but merely another “story” to add to the collective provided by this forum.
When I was at my physical, mental and emotional nadir due to the aggressiveness of my advanced Stage 4 disease, my wife hugged me and said “I don’t want you to leave.” Her choice of the word “leave” rather than “die” had a huge impact on my rumination and meditation on death which, naturally, was obsessing me at the time. Everything had been put in order and I had a referral for hospice, so all that was left was to accept the fact that no one gets out of life alive and, at some point, I, too, was going to walk out the door and “leave” the party. My horizons were closing in and I was gradually surrendering the concept of “future.” As uncomfortable as this was, it was also very liberating. The concept, and my perspective, of time took on a whole new dimension. Important things became unimportant, and some unimportant things blossomed into all-encompassing, rewarding experiences. If fate had guided me out the door at that time, I would have been ready to “leave,” without a fight, without an argument.
At that point, a different door opened, and I entered the nivo/ipi trial. I happened to be a “complete responder,” and within four months my tumors were undetectable (my wife calls me the luckiest unlucky person she has ever met). That was two years ago, and I remain NED.
Everyone approaches the reality of impermanence differently. There is no right way and no wrong way. And rarely, is there a comfortable way…
-
- March 1, 2016 at 6:24 pm
Greetings DVD, your message struck a nerve…hard. I have had to fight off tears reading your story, and simultaneously cheered at your amazing comeback. Thank you so much for writing, and perhaps you found it as therapeutic writing a response, as I had writing the question. My wife uses the same terminology as we sometimes discuss the "what if" and I too have sewed up the loose ends, and most thankfully had the foresight as a young, healthy man to secure and maintain life insurance. At least I'm sure my family will not be cast into financial despair while also losing a husband and father. I have had to face the reality of being a non-responder, to everything and I have had top-notch care and followed every step you are supposed to take in treatment. Your story offers tremendous inspiration to me, that the next treatment regime, whatever it is, will be the one that turns the ship around. Thanks again for inspiring me, and I'm sure others.
Aloha, Gary
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- March 1, 2016 at 6:24 pm
Greetings DVD, your message struck a nerve…hard. I have had to fight off tears reading your story, and simultaneously cheered at your amazing comeback. Thank you so much for writing, and perhaps you found it as therapeutic writing a response, as I had writing the question. My wife uses the same terminology as we sometimes discuss the "what if" and I too have sewed up the loose ends, and most thankfully had the foresight as a young, healthy man to secure and maintain life insurance. At least I'm sure my family will not be cast into financial despair while also losing a husband and father. I have had to face the reality of being a non-responder, to everything and I have had top-notch care and followed every step you are supposed to take in treatment. Your story offers tremendous inspiration to me, that the next treatment regime, whatever it is, will be the one that turns the ship around. Thanks again for inspiring me, and I'm sure others.
Aloha, Gary
-
- March 1, 2016 at 6:24 pm
Greetings DVD, your message struck a nerve…hard. I have had to fight off tears reading your story, and simultaneously cheered at your amazing comeback. Thank you so much for writing, and perhaps you found it as therapeutic writing a response, as I had writing the question. My wife uses the same terminology as we sometimes discuss the "what if" and I too have sewed up the loose ends, and most thankfully had the foresight as a young, healthy man to secure and maintain life insurance. At least I'm sure my family will not be cast into financial despair while also losing a husband and father. I have had to face the reality of being a non-responder, to everything and I have had top-notch care and followed every step you are supposed to take in treatment. Your story offers tremendous inspiration to me, that the next treatment regime, whatever it is, will be the one that turns the ship around. Thanks again for inspiring me, and I'm sure others.
Aloha, Gary
-
- February 29, 2016 at 5:29 pm
An important, and, yes, deeply personal question that many have, and will, face. I can relate some of my experience – not as a guideline – but merely another “story” to add to the collective provided by this forum.
When I was at my physical, mental and emotional nadir due to the aggressiveness of my advanced Stage 4 disease, my wife hugged me and said “I don’t want you to leave.” Her choice of the word “leave” rather than “die” had a huge impact on my rumination and meditation on death which, naturally, was obsessing me at the time. Everything had been put in order and I had a referral for hospice, so all that was left was to accept the fact that no one gets out of life alive and, at some point, I, too, was going to walk out the door and “leave” the party. My horizons were closing in and I was gradually surrendering the concept of “future.” As uncomfortable as this was, it was also very liberating. The concept, and my perspective, of time took on a whole new dimension. Important things became unimportant, and some unimportant things blossomed into all-encompassing, rewarding experiences. If fate had guided me out the door at that time, I would have been ready to “leave,” without a fight, without an argument.
At that point, a different door opened, and I entered the nivo/ipi trial. I happened to be a “complete responder,” and within four months my tumors were undetectable (my wife calls me the luckiest unlucky person she has ever met). That was two years ago, and I remain NED.
Everyone approaches the reality of impermanence differently. There is no right way and no wrong way. And rarely, is there a comfortable way…
-
- February 29, 2016 at 6:26 pm
My initial diagnosis was stage 4 and I have what has been diagnosed as a 'morbid' phobia of doctors and hospitals. (By the way I am officially 'sane'. I have the documentation to prove it.)
I was fine with dying. For me, constant hospital appointments would make my life not worth living. I would stop being me. I was resolved to die on my terms rather than someone else's.
My wonderful husband understood. We sorted our wills. I llookied into taking my pension early so that I could enjoy it. I made my bucket list and started working through it. I started to look up how I could die at home rather than in a hospital or hospice.
Most of the doctors I met couldn't cope with my attitude. My GP (I think what you would call a family doctor in the USA) really struggled at first. I don't think it helped when he realised that I had been on his books for twenty-two years and I had only seen him once.
We've all been on a jounrey since then.
I met my melanoma specialist. She persuaded me to try Ipi. I could be treated with Ipi without being admitted to hospital. I would have to spend two hours sitting in an armchair in a clinic every three weeks for four treatments. I wouldn't have to go near a doctor – all the staff at the treatment clinic are nurses. My husband and I looked on it as a waypoint. It only had a 15% chance of working. It would be Ipi, then Vemurafenib and that would be it.
First shock was the result of the PET scan. The lump on my abdonmen wall in the small lump in my lung weren't melanoma. I wasn't stage 4, I was stage 3c. No Ipi – you have to be stage 4 to get Ipi.
No surgery – there was no way I was agreeing to surgery. When it spread enough I would try Ipi if Ipi was still available. If turning down the surgey meant no Ipi in the future, that was fine. There was only a 15% chance it would do any good. We would go back to the original plan.
Then to my surprise they let me have the Ipi. The phobia made the melanoma inoperable so I qualified.
Even bigger surprise, I turned out to be a responder.
Now it is really weird because I have to think about the possibility of living (and having to visit doctors regularly) rather than the certainty of dying.
I still struggle with having to interact with doctors. I agreed to have psychotherapy to try to mitigate the phobia because that melanoma specialist, the one who got me the Ipi, asked me to. Luckily I am not phobic of psychotherapists. I have tried CAT (Cognitive Analytic Therapy) and EMDT (Eye Movement Desensitization Therapy).
I can visit my GP on my own now. With any other doctor I have to have my husband with me. I managed to allow my GP to take blood last month. A doctor touched me and I didn't have a panic attack! Do I trust 'doctors'? No. Do I trust my GP and my melanoma specialist? Maybe.
That doctor, my GP, turned out to be exceptional. He contacted a palliative care consultant and talked to her. After that he could cope.
So my contribution is that it is different for each person. It is very different for me.
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- February 29, 2016 at 6:26 pm
My initial diagnosis was stage 4 and I have what has been diagnosed as a 'morbid' phobia of doctors and hospitals. (By the way I am officially 'sane'. I have the documentation to prove it.)
I was fine with dying. For me, constant hospital appointments would make my life not worth living. I would stop being me. I was resolved to die on my terms rather than someone else's.
My wonderful husband understood. We sorted our wills. I llookied into taking my pension early so that I could enjoy it. I made my bucket list and started working through it. I started to look up how I could die at home rather than in a hospital or hospice.
Most of the doctors I met couldn't cope with my attitude. My GP (I think what you would call a family doctor in the USA) really struggled at first. I don't think it helped when he realised that I had been on his books for twenty-two years and I had only seen him once.
We've all been on a jounrey since then.
I met my melanoma specialist. She persuaded me to try Ipi. I could be treated with Ipi without being admitted to hospital. I would have to spend two hours sitting in an armchair in a clinic every three weeks for four treatments. I wouldn't have to go near a doctor – all the staff at the treatment clinic are nurses. My husband and I looked on it as a waypoint. It only had a 15% chance of working. It would be Ipi, then Vemurafenib and that would be it.
First shock was the result of the PET scan. The lump on my abdonmen wall in the small lump in my lung weren't melanoma. I wasn't stage 4, I was stage 3c. No Ipi – you have to be stage 4 to get Ipi.
No surgery – there was no way I was agreeing to surgery. When it spread enough I would try Ipi if Ipi was still available. If turning down the surgey meant no Ipi in the future, that was fine. There was only a 15% chance it would do any good. We would go back to the original plan.
Then to my surprise they let me have the Ipi. The phobia made the melanoma inoperable so I qualified.
Even bigger surprise, I turned out to be a responder.
Now it is really weird because I have to think about the possibility of living (and having to visit doctors regularly) rather than the certainty of dying.
I still struggle with having to interact with doctors. I agreed to have psychotherapy to try to mitigate the phobia because that melanoma specialist, the one who got me the Ipi, asked me to. Luckily I am not phobic of psychotherapists. I have tried CAT (Cognitive Analytic Therapy) and EMDT (Eye Movement Desensitization Therapy).
I can visit my GP on my own now. With any other doctor I have to have my husband with me. I managed to allow my GP to take blood last month. A doctor touched me and I didn't have a panic attack! Do I trust 'doctors'? No. Do I trust my GP and my melanoma specialist? Maybe.
That doctor, my GP, turned out to be exceptional. He contacted a palliative care consultant and talked to her. After that he could cope.
So my contribution is that it is different for each person. It is very different for me.
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- February 29, 2016 at 7:45 pm
Just to give some maybe helpful insight to Gary's question above, I thought I would give a brief acount of what led my husband to his decision. Actually to put in in better words, his body's decision. From the very beginnning he and I were fighting this all tooth and nail to the bitter end. We too, had to travel for top notch doc and tirials. We had two teen daughers he was determined to see through college. He was in great shape, never smoked, drank, ran a his own construction business and was in superior health and strong.
He fought many battles over the last two years and everytime I would find a new trial available we wanted to know everything about it and head full steam in which we did.
It wasnt until this past winter that all of sudden things changed. After years of deailiing with side effects and too many trips in the car to the doc office, too many hours away, finally something was out of our control. Up until the last couple months, we were in control. We decided which trials, which surgeries, which side effects to treat next.
Then, no matter what your heart and mind our telling you, you body wont listen and takes conrols. It was the pain. It happened it seemed overnight, and although its been several week, we still thought we had months to get his strength back and back into another trial. In fact, he had his first T-vec vaccnine just two days before we had to call hospice in.
His pain just over took him, he was enough pain meds the doc said to down a ranch or horses, he he wanted to continue. It wasnt until he saw himself in the mirror one night and saw how much weight he had lost, and how tired he looked. He and I knew that his body would not recover from this. Then in just two days after hospice came in, he was on enough pain medicine thank God that he can now rest an sleep and he doesnt have to suffer. He looks peaceful for the first time in a long time, but he does not look like the man I married 27 years ago, and the pain meds have taken the last bit of traces of his witty humor, and loving word I will so miss.
Please keep fighting and fighting and there are those than can beat this. We tried it all, so we beleive, and it is just time.
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- February 29, 2016 at 7:45 pm
Just to give some maybe helpful insight to Gary's question above, I thought I would give a brief acount of what led my husband to his decision. Actually to put in in better words, his body's decision. From the very beginnning he and I were fighting this all tooth and nail to the bitter end. We too, had to travel for top notch doc and tirials. We had two teen daughers he was determined to see through college. He was in great shape, never smoked, drank, ran a his own construction business and was in superior health and strong.
He fought many battles over the last two years and everytime I would find a new trial available we wanted to know everything about it and head full steam in which we did.
It wasnt until this past winter that all of sudden things changed. After years of deailiing with side effects and too many trips in the car to the doc office, too many hours away, finally something was out of our control. Up until the last couple months, we were in control. We decided which trials, which surgeries, which side effects to treat next.
Then, no matter what your heart and mind our telling you, you body wont listen and takes conrols. It was the pain. It happened it seemed overnight, and although its been several week, we still thought we had months to get his strength back and back into another trial. In fact, he had his first T-vec vaccnine just two days before we had to call hospice in.
His pain just over took him, he was enough pain meds the doc said to down a ranch or horses, he he wanted to continue. It wasnt until he saw himself in the mirror one night and saw how much weight he had lost, and how tired he looked. He and I knew that his body would not recover from this. Then in just two days after hospice came in, he was on enough pain medicine thank God that he can now rest an sleep and he doesnt have to suffer. He looks peaceful for the first time in a long time, but he does not look like the man I married 27 years ago, and the pain meds have taken the last bit of traces of his witty humor, and loving word I will so miss.
Please keep fighting and fighting and there are those than can beat this. We tried it all, so we beleive, and it is just time.
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- March 1, 2016 at 6:36 pm
Pookerpb,
Your original post was in part what triggered my original question. While many of us on this board, may avoid reading, and facing up to our own mortality, your story should also help guide those who once reaching this most difficult place, know when enough is enough. I personally related, very strongly with the analogy of withering away. Various treatments have taken different tolls on my body and at times, I honestly did not recognize myself in the mirror. In my case at least, those failures also lead to less damaging treatments and I have fought my way back several times to the point I look almost like my old self as my wife likes to say. Many people on this board have offered their thoughts and prayers to you and your family at this most difficult time. Thank you for writing, and sharing a story so deeply difficult and personal. Add my prayers to the many who wish your family strength and courage.
Aloha, Gary
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- March 1, 2016 at 6:36 pm
Pookerpb,
Your original post was in part what triggered my original question. While many of us on this board, may avoid reading, and facing up to our own mortality, your story should also help guide those who once reaching this most difficult place, know when enough is enough. I personally related, very strongly with the analogy of withering away. Various treatments have taken different tolls on my body and at times, I honestly did not recognize myself in the mirror. In my case at least, those failures also lead to less damaging treatments and I have fought my way back several times to the point I look almost like my old self as my wife likes to say. Many people on this board have offered their thoughts and prayers to you and your family at this most difficult time. Thank you for writing, and sharing a story so deeply difficult and personal. Add my prayers to the many who wish your family strength and courage.
Aloha, Gary
-
- March 1, 2016 at 6:36 pm
Pookerpb,
Your original post was in part what triggered my original question. While many of us on this board, may avoid reading, and facing up to our own mortality, your story should also help guide those who once reaching this most difficult place, know when enough is enough. I personally related, very strongly with the analogy of withering away. Various treatments have taken different tolls on my body and at times, I honestly did not recognize myself in the mirror. In my case at least, those failures also lead to less damaging treatments and I have fought my way back several times to the point I look almost like my old self as my wife likes to say. Many people on this board have offered their thoughts and prayers to you and your family at this most difficult time. Thank you for writing, and sharing a story so deeply difficult and personal. Add my prayers to the many who wish your family strength and courage.
Aloha, Gary
-
- February 29, 2016 at 7:45 pm
Just to give some maybe helpful insight to Gary's question above, I thought I would give a brief acount of what led my husband to his decision. Actually to put in in better words, his body's decision. From the very beginnning he and I were fighting this all tooth and nail to the bitter end. We too, had to travel for top notch doc and tirials. We had two teen daughers he was determined to see through college. He was in great shape, never smoked, drank, ran a his own construction business and was in superior health and strong.
He fought many battles over the last two years and everytime I would find a new trial available we wanted to know everything about it and head full steam in which we did.
It wasnt until this past winter that all of sudden things changed. After years of deailiing with side effects and too many trips in the car to the doc office, too many hours away, finally something was out of our control. Up until the last couple months, we were in control. We decided which trials, which surgeries, which side effects to treat next.
Then, no matter what your heart and mind our telling you, you body wont listen and takes conrols. It was the pain. It happened it seemed overnight, and although its been several week, we still thought we had months to get his strength back and back into another trial. In fact, he had his first T-vec vaccnine just two days before we had to call hospice in.
His pain just over took him, he was enough pain meds the doc said to down a ranch or horses, he he wanted to continue. It wasnt until he saw himself in the mirror one night and saw how much weight he had lost, and how tired he looked. He and I knew that his body would not recover from this. Then in just two days after hospice came in, he was on enough pain medicine thank God that he can now rest an sleep and he doesnt have to suffer. He looks peaceful for the first time in a long time, but he does not look like the man I married 27 years ago, and the pain meds have taken the last bit of traces of his witty humor, and loving word I will so miss.
Please keep fighting and fighting and there are those than can beat this. We tried it all, so we beleive, and it is just time.
-
- February 29, 2016 at 6:26 pm
My initial diagnosis was stage 4 and I have what has been diagnosed as a 'morbid' phobia of doctors and hospitals. (By the way I am officially 'sane'. I have the documentation to prove it.)
I was fine with dying. For me, constant hospital appointments would make my life not worth living. I would stop being me. I was resolved to die on my terms rather than someone else's.
My wonderful husband understood. We sorted our wills. I llookied into taking my pension early so that I could enjoy it. I made my bucket list and started working through it. I started to look up how I could die at home rather than in a hospital or hospice.
Most of the doctors I met couldn't cope with my attitude. My GP (I think what you would call a family doctor in the USA) really struggled at first. I don't think it helped when he realised that I had been on his books for twenty-two years and I had only seen him once.
We've all been on a jounrey since then.
I met my melanoma specialist. She persuaded me to try Ipi. I could be treated with Ipi without being admitted to hospital. I would have to spend two hours sitting in an armchair in a clinic every three weeks for four treatments. I wouldn't have to go near a doctor – all the staff at the treatment clinic are nurses. My husband and I looked on it as a waypoint. It only had a 15% chance of working. It would be Ipi, then Vemurafenib and that would be it.
First shock was the result of the PET scan. The lump on my abdonmen wall in the small lump in my lung weren't melanoma. I wasn't stage 4, I was stage 3c. No Ipi – you have to be stage 4 to get Ipi.
No surgery – there was no way I was agreeing to surgery. When it spread enough I would try Ipi if Ipi was still available. If turning down the surgey meant no Ipi in the future, that was fine. There was only a 15% chance it would do any good. We would go back to the original plan.
Then to my surprise they let me have the Ipi. The phobia made the melanoma inoperable so I qualified.
Even bigger surprise, I turned out to be a responder.
Now it is really weird because I have to think about the possibility of living (and having to visit doctors regularly) rather than the certainty of dying.
I still struggle with having to interact with doctors. I agreed to have psychotherapy to try to mitigate the phobia because that melanoma specialist, the one who got me the Ipi, asked me to. Luckily I am not phobic of psychotherapists. I have tried CAT (Cognitive Analytic Therapy) and EMDT (Eye Movement Desensitization Therapy).
I can visit my GP on my own now. With any other doctor I have to have my husband with me. I managed to allow my GP to take blood last month. A doctor touched me and I didn't have a panic attack! Do I trust 'doctors'? No. Do I trust my GP and my melanoma specialist? Maybe.
That doctor, my GP, turned out to be exceptional. He contacted a palliative care consultant and talked to her. After that he could cope.
So my contribution is that it is different for each person. It is very different for me.
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