Hello all. I hope this update doesn't break any rules, as I suppose I do not have any questions. Mods, let me know. I did not want to just disappear from reddit. I know a number of you have been thinking about me.
I said I would post an update before I passed away and, well, here I am. I know it is fast. But things have been happening fast. I don't mean to flood this sub with my misery. I'm on some heavy duty medications. I hope this doesn't come off as rambling.
This will be my final post. The Cancer is all through both sides of my chest and above my collarbone. It's over.
I was diagnosed with Extensive Stage small cell lung cancer and given four months to live on the 6th. Well, it seems "two weeks" was a more accurate approximation of my time. I am not long for this world.
As for what happened-- I wasn't slated to meet my hospice team till yesterday, Friday. I went to the ER on Thursday with chest pain. They took a lot of fluid out of my chest. The ER physician described my imaging as "grotesque" and immediately asked if I had considered palliation. I said I didn't see hospice till tomorrow. He said if I wanted any chance of dying at home, I needed to see them NOW, otherwise he'd have to admit me. He won't be getting any awards for bedside manner any time soon, but I greatly appreciated his candor. Several urgent phone calls later I had a palliative Nurse Practitioner in my room who went through the screening process and admitted me to their home hospice program. I went home Friday morning with a hospice kit. Met the palliative physician that evening, shortly after I posted my list of questions here.
I will not see Christmas, or Thanksgiving, or even next weekend. Every breath is work. Each one more work than the last. My team estimates that, at this rate, I will die Tuesday at the absolute latest. Probably sooner. Maybe tomorrow. Maybe tonight.
My oncologist called to personally apologize for misjudging my remaining time, but I hold him no ill will. Determining the time of death is not an exact science. I know that. I'm arranging to donate my body to science. I want them to do an autopsy and see how it got me so quickly, to help other cancer patients. The oncologist thinks the cancer may have gotten to my heart or the major central blood vessels. I didn't think small cell could move THIS fast but my oncologist says we caught it late.
My hospice team has been wonderful. I have crossed tapered from bupenorphine-- which I discontinued Wednesday-- to methadone, with little difficulty. I have a lot of morphine and the option of hydromorphone is on the table as well if needed. I am comfortable and resting at home.
The next stop on the train is continuous sedation, and I am very tired, so I probably will not be able to respond to anyone like I did last time. My physician says we can start a midazolam drip as soon as tonight. I will probably take him up on the offer tomorrow, if I'm still alive.
I suppose this is a good place to share where my fears around palliation come from. I used to be an aid in a nursing home, many years ago. I saw a number of unpleasant deaths due to insufficient palliation. We had a wonderful man who was prescribed a self administration pump for morphine. Problem was, he was too sick to press it, and his physician did not seem to grasp the severity of his condition. Every half hour, one of us would sneak in and press the button on his pump, which, in hindsight, was probably illegal, but what else could we do? He was very uncomfortable at the end. I tried to do basic mouth care just before he passed and he recoiled in pain. "Have a heart", he whispered. It broke my heart to hear this admonition from such a wonderful man.
My greatest fear was Terminal Restlessness. I saw a few patients scratch their faces and tear their fingernails out as they died, even on high doses of opioids and benzodiazepines. My palliative physician has assured me that he won't let that happen and that there is no limit to what they can give me. I feel much reassured.
I have tried to write letters to the people I've wronged. I suddenly find that I want to make amends. So many letters. I was a functioning addict for a long time. My family cut me off, rightfully so. So I have been writing a lot of letters. But I am losing strength. I will not be able to write many more letters. My CNA has transcribed one letter template for everyone. I hope it is enough.
I also had many kind offers to transcribe letters from Redditors here on the sub. What love that you would do that for a stranger. If I was strong enough to talk on the phone, I would have taken you all up on it, but I can barely talk. Perhaps, had I not been so stunned by my diagnosis, I could have arranged this sooner. But that is in the past now.
Dad, if you somehow see this post, I know how much I hurt you and and I am sorry. I wish I could call you. I do not even know where you live and I'm not strong enough to find you. I do not ask for your love, for that is beyond my power to ask. Just your forgiveness is enough. Please Dad, forgive me. I do not want die without your forgiveness. But I will, won't I?
I beseech you all to make amends with those you begrudge. Do not go to bed angry or hold hate in your heart. You will be glad that you forgave. I wish I had done so sooner, before I ran out of time. You will run out of time, too, some day in the future. Don't leave any business unfinished, any grudge unmended.
There a nicotine patch on my arm. A reminder of one of the several self destructive habits that brought me here. My smoking habit was not had enough to set things off this quickly, but it clearly did not help. For those of you who smoke, I have but one message: stop it. Please. You think you will wait till you are ready. You will never be ready. You say you will quit tomorrow, but then tomorrow becomes today, and you are never ready today, only tomorrow. Tomorrow never comes. Today is the only day in which the decision can be made. You can only quit TODAY. Do so now. Throw your cigarettes in the trash. Do it for me. What a gift it would be that my post would free you of tobacco's golden chains.
As difficult and shocking as these last few weeks have been, I regard them as positive.
Only four weeks ago, I thought that the universe was a cold and cruel place. I experienced physical and mental abuse, chronic pain, and addiction. But my situation has forced a change of perspective. I see now that all our experiences, no matter how horrid, are temporary, and that we will all find the same rest and peace in the end.
I do not mean to give the wrong impression to those struggling with depression. I have tried to kill myself before. The difference between then and now is vast. Death is an old friend waiting to greet you at the end of a long and well lived life. It can not be appreciated properly when sought in darkness. I know there is no magic fix for depression, but I urge you to get up, go out, and live the crazy, wonderful, irrational, beautiful life you want. If only I had done the same. What a gift is life!
Thank you all for your love, empathy, and reassurance. For all the people who PMed me offering to help with transcribing letters, for all the kind messages and comments. You are all beautiful people. I hope you remember that. No matter what anyone else says or thinks, or even what you yourself think, you are beautiful and can only be so, because you reached out to a stranger in his moment of pain. Your hearts will always carry that little light of goodness no matter how dark your days. Carry that little light with you and forget it not. It can brighten a stranger's day. It can even save the world.
A few PMed me asking to look into their religion. In the past I would have been irritated. Now I recognize that you were concerned for my souls well being. Thank you for your compassion. I am not well versed on religion, but I have prayed, and I trust that whatever higher power may dwell above the stars will look upon my situation with infinite love and compassion. This in my heart I know.
/u/hugegrape, you wanted to make me a plushie free of charge. Your care and empathy have touched my heart. I'm sorry to say that I will not be in a position to receive it. I did not expect to go this fast. I want you to make it anyway. I want you to keep it with you and know that you will always have a part of me. I hope this brings you some comfort. You have my everlasting love and gratitude.
Wishes are usually reserved for the future. I have no future. But I find myself still wishing.
I wish I had not worried so much about the little things. I wish I had not worried so much about the numbers in my bank account or the punch of the time clock. All that time working. I had enough money to keep a roof over my head and to invest in what few hobbies I had, yet I still kept racking up overtime. And for what? Only to find myself here. It all came to nothing in the end. I robbed myself of the most precious commodity I had, time, in exchange for green pieces of paper and little metal discs. A perverse and twisted trade. Only now do I see the truth.
I wish I had had the courage to live my life the way I wanted to. I wish I had traveled the world, fallen in love, written a novel. I wish I had had children. I have no one to whom I can pass my life lessons. No one to sit by my side, here at the end of my world. It is too late for me. But it is not too late for you. Live the life YOU want, no matter how strange it may seem to others or to society. It is your life and yours alone. Live it well.
I'm not sure where I go from here. I have been reading accounts of the afterlife from various cultures. Summerland, Elysium, Tir Na Nog. I've also taken to reading The Tibetan Book of Living and Dying, though it seems I will run out of time before I can finish. What a strange feeling. I personally do not believe consciousness survives death, but I'm open to being pleasantly surprised. And if not, well, who can complain about a siesta that can't be interrupted? Regardless of what awaits me, it is nice to dream.
And that is what I will do now. I will dream. I will rest and dream of the peace to come till I dream no more. May you all one day face death with this same wonderful dream.
I do not have any friends or family to sit here with me, so I am leaving this tab open. I will read your comments and savor your reassurances, even if I do not reply. I will keep you all here with me. I feel less alone this way. I will keep you all with me as I die. You people are all I have now. I am strong but I am scared. Stay with me till I'm gone. I do not want to be alone.
Till we meet again, my beautiful friends.
Robert S
Edit: just woke up from my nap and I'm overwhelmed by the outpouring of love. I'm touched by the people throwing away their cigarettes and finding the courage to pursue the life they want. What a blessing you all are. I am reading every message I can even if I don't respond. Tears streaming down my face. Now I know I will not die alone. What a gift this sub has given me.
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