Accepting Terminal Illness

How do you truly accept that you are going to die?

When I was first given the diagnosis, in what feels like the start of a second life, I found it almost impossible to concentrate on anything other than cancer and death. It felt like I was having an existential crisis. I was getting by minute by minute, hour by hour, and my mind felt like it was melting as I tried to contemplate the unfathomable. The bleak statistics were constantly going around my head. Less than 10% of people in my position live more than 5 years. The most (and only really proven) effective treatment has about a 30% chance of being effective at keeping the disease stable. Even with it, median life span is about 18 months. With everything else going on - a constant stream of hospital appointments, telling people what was happening, and dealing with the fallout in other parts of my life - it was a lot to get my head around. But I was treating it like a death sentence, and started reading what I could about terminal illness and how to deal with it. Trying to tackle the meaning of life and death within a two week period by reading book after book on philosophy probably wasn’t the best approach, and I think I scared quite a few people around me with my morbid rants as I prepared for the worst. But when treatment started, and things started to go far better than expected, it was easy to forget the grim reality of the situation. I parked the idea of dying at the back of my mind, and it only reared its ugly head every now and then. It was something to address when the time came. 

It’s almost two years later and I’m still finding it hard to reconcile the fact that at some point soon I am almost certainly going to die. I understand it logically, but emotionally it just doesn’t make sense. How can I feel so healthy yet be so unwell? I feel better now than when I was diagnosed and if I don’t overthink the occasional cough, I have no symptoms at all. This does not line up with my idea of dying. When I’m shown the images from a PET scan - a huge tumour where my right kidney used to be as well as my lungs lit up like fireworks -  and add to that the high rate of progression of the disease and fact I’m not getting treatment, I can’t deny what is going on in my body. But that doesn’t make it easier to truly accept, which means it is also quite easy to ignore. 

Having read a fair amount about what might constitute a so-called ‘good death’, as well as being not-so-gently pushed by some of my friends, I think it’s important that I (and most people) think about what this idea means now rather than in the final days when you haven't got the energy or physical ability to do or say what you want. Luckily, covid is giving me plenty of time to reflect on this and think about how to address this. I hope this post acts as the first step, and will lead to more conversations about it. . 

What even is a good death? Is there a correct way to approach it? The main way I’m trying to force myself to is to ask myself ‘if I knew that I’m going to die tomorrow, what will I want and what will I regret?’ This actually has a simple answer - any long term aspirations, family plans, career goals, travel ideas become irrelevant. All I really, deeply want is for the people that I love and care about to know how much they mean to me, and the impact they have had on my life. For me, a good death is one where I am surrounded by people I love, where the atmosphere isn’t depression. Everything important that I want to say to people has been said, and vice versa, which allows us just to enjoy each other's company and be in the moment. I don’t think that is too unrealistic. Extending that out, due to the likelihood that I won’t die tomorrow, it would be great if the next weeks and months are in similar circumstances. No giant elephant in the room (or blocking the camera during video calls). Just a pure enjoyment of living and everything it entails. 

Whilst not unrealistic, it will take a huge amount of emotional effort on my part. I have had plenty of opportunity to speak to the people close to me over the last two years and I’m clearly not very good at it. Although I have been so appreciative of the huge number of people who have offered to chat/listen, I haven’t really taken anyone up on the offer. This is partially due to the mañana attitude that is easy to have when something doesn’t seem imminent, and the fact that the majority of the time I am pretty happy and want to stay happy rather than focusing on the more negative thoughts that are going around my head. When I do talk I focus on the more pragmatic (how is treatment going, what choices do I have etc) or the physical side (how am I feeling, what would help) of what is happening. Perhaps others are just following my lead but I think most people are doing the same. I guess it is risky to ruin a perfectly good conversation by bringing up my impending deterioration into nothingness. 

It is also because of my natural habit of thinking I can deal with things myself and not wanting to burden people. Seeing as what I’m currently going through is up there with the hardest things anyone has to deal with, I need to allow myself to be vulnerable and accept people’s help on this, if they are truly willing. The emotional side is clearly so much harder, definitely for me and I think for most people. Death, and dying, is a taboo and unwanted subject. I definitely won’t want to talk about it in every conversation I have, but I think ideally over time it will just become part of normal conversation, rather than it having to be a separate one that makes people anxious. I’m going to force myself out of my comfort zone for that, and hope that whoever I talk to is prepared to do the same. 

Comments

  1. You have been such a strong person and I am glad I have met you and you are now a wonderful friend. I feel guilt I am not at the hospital due to maternity leave. I miss you coming in for check ups or just a quick chat. I close my eyes and I see you coming on front door with your smile because may be you were bit late.... but was never a problem. I enjoyed your presence and feel blessed I had the opportunity to cover Adelina's work and know you better.
    If I could change things I would.... but because I can't I pray for you and for our friendship and never forget I am here whenever you need. You are never gonna be an intruder. You will be a pleasure to talk to. Cant wait for this coronavirus crisis to settle so we can meet up. Love you lots my greatest fighter xxxx

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  2. Replies
    1. This is for Elliot Dallen, please check out the german doctor Johanna Budwigs diet. She has pulled people out of stage 4 cancer, The US allegedly tried to market this but for obvious reasons, she would not sell it. She has passed but her diet lives on. It is worth a try. Die fighting.

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  3. Hey Elliot,

    Its Matt Harris back from the mid teenage years of endless summers in Thornhill.

    I just came across your article for the Guardian while idly scrolling on the main page trying to avoid doing my work. I don't exactly know what I want to say - and very much doubt it really even matters in the grand scheme of things - but I think the frankness and openness you're able to talk about what you've been going through is really commendable and touching.

    I really can't begin to imagine how the last few years have been for you, but I'm really happy to hear that you seem to have made peace with it and ultimately accept it. Again, I can't imagine how hard that must be.

    I started the morning wanting to distract myself from the usual grind - unexpectedly found myself with tears in my eyes reading your writing

    x

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  4. just read about you and your story in the guardian, which brought me to this blog. I just want to say thank you for your deep thoughts and insights which I like very very much. they are enlightening and accurate!
    e.g. "It would be a period that maybe only tends to come in times of tragedy, where vulnerability and urgency create connections at a higher level. Where the bittersweet feelings of love and loss exist simultaneously and we are at our most human."
    so true for me!
    I can only strengthen your approach to continue thinking about (your) death and talking to others about it. as a way of helping to clear thoughts and emotions. yours, that of your friends and loved ones and that of strangers like me.
    from my very heart I wish you all the best for your remaining time in this world. may love give you the best possible days and moments. and a death that will be as "good" as you want him to be.
    a big and heartful virtual hug from austria!
    you are a brave and fascinating person!

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  5. Your words so wise, so thruthful and so helpful. No, it’s difficult to accept the fear but you are encompassing it. You are here. Ahora. Hoy. Ahora. Physically detached but we are ONE. And your are giving so much to that ONE. Gracias.

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  6. Elliott life is too mysterious to explain. For what it’s worth it is my deep and heartfelt sense that you some form of you will continue after your time here on earth. And that you will not be lonely. Elliott a person could open their heart, ground them selves deeply to the earth, breathe as deep as you can be as available as you can to the mystery feel as much love as you can it does get transmitted across stone walls and miles. Someone is with you, feel that if you can. Don’t force yourself if you can’t. Life is mystery beyond words Elliott. That, I feel in my bones.

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  7. Elliot, you are one strong, brave and loving man! Having connected to you today after reading your beautiful but also devastating article about your fight with terminal cancer made me truly realize that we all have different struggles and how grateful I am to have met you this way. Keep on hoping and living, loving and laughing.

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  8. Hello, Elliot. Thank you for sharing with us in the article I read this morning. I just wanted to let you know your writing touched me deeply. I came back from two years out in Colombia last year and I know that your experience there will have been a life-changing one. As life continues to change beyond our control, this stranger sends you gratitude and love.

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  9. Dear Elliot. I've just read your article published in the Guardian and felt moved to seek you out and write. I cant and I wont offer any " feel good" platitudes. I'll only say that your story touched me deeply. Wishing you peace x

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  10. I too have just read your piece in the Guardian, and like the previous commenter am compelled to reach out to you to say that your words connected me with you, so many thousands of miles away in Asia. Thank you for sharing all that you have, and I too wish you much peace.

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  11. Like many of the other people commenting, I found my way from the Guardian.

    I'd just like to say that you have a beautiful writing style, Elliot. You really do.

    It must be so difficult to not feel abandoned by society or the NHS at this point in time, I'm sure you've been through these thoughts way more deeply than I could in my five minutes since reading your article,. My views on death have always been that ultimately, we all face it alone. It's the most personal experience we will ever have in our lifetime - it's an experience that can't be compared or shared. Like waiting at the top of a roller-coaster when you know the dip is about to come.

    At some point, no matter how you lived your life, you will be forgotten. I will be forgotten. All of us will be. Our country, indeed our planet, one day in the future, will be forgotten. This thought used to scare me, but now I find it to be incredibly empowering. Time is the great equaliser.

    From one person to another, I'm sending massive amounts of positivity and love at you. I plan on continuing to read about your beautiful life for as long as you keep posting.

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  12. Hi Elliot,

    Like you I don’t consider myself someone who tries to hide my emotions - they just never seem to make an appearance. But not today…your writing has moved me deeply and I feel compelled to leave this comment.

    Your attitude is remarkable and there’s a lot people can take from it.

    Thank you for sharing your experience, thoughts, insecurities and strength with us.

    Best wishes and love from Scotland!

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  13. Hi Elliot. Big love from Cumbria. xx Ben & family.

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  14. I was looking for your social media after reading your article and found this blog. Sending you love and happiness Elliot. I really can't imagine how you feel. I hope you get to see your family and loved ones again.

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  15. Hi Elliot. I am also someone who read your very fine Guardian article and felt I wanted to get in touch to say how much it meant. Facing up to mortality is all our fate but it seems so unfair that your particular circumstances are forcing you to face it seemingly alone. All I can do is wish you peace of mind and hope that you find a way through. I hope and think that the truth is you are a very loved person.

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  17. Elliot, thanks for embracing that fear and accepting it. Thanks for sharing your thoughts with us too. You are a truly beautiful man. I wish you a peaceful transition and a wonderful journey afterwards. Greetings and pure love from Galicia, Spain.

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  18. Hi,
    I just read your piece in The Guardian, and was moved.

    To keep on the positive side, here are good things of your situation: you seem to be very strong and balanced person, you've got to travel to Colombia, you have incredible view (from the photo you posted), you feel well at the moment, and you look good even without hair.

    I was surprised to read that your therapist had the impression that you are not ready to die. Should anybody be?

    I wish you a miraculously long life!
    Love from Slovenia

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  19. Hello Elliot,

    I read your article in the Guardian and wanted to commend you on the bravery with which you are facing this incredibly difficult situation. Makes everything else seem unimportant for the moment. Thank you for your courage and I hope that you do recover from this.

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  20. Hi,

    I came across your article for the Guardian which I found simultaneously depressing and uplifting. I am at a loss at what to say, but because I was so moved I felt compelled to say something, if only that reading your article has had such an incredibly powerful impact on me. I feel extremely humbled and lucky. If it is any comfort, your article has inspired me to be happy and positive and grateful all of the time. Thank you for that.

    I wish you comfort in whatever the future holds for you.

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  21. You are so inspiring! And a great writer. I hope you beat the odds with your positive attitude and get to enjoy past lockdown time with your friends and family.

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  22. Elliott, I could try to offer words of encouragement, but I doubt that is what you want to hear. I keep thinking of Robert Kennedy quoting a poem by Aeschylus:

    “And even in our sleep,
 pain which cannot forget
falls drop by drop upon the heart,
 until in our own despair, 
against our will,
 comes wisdom through the awful grace of God.”

    Be brave my friend. You inspire us.

    Jerry

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  23. Hi Elliot. Thank you, it's the most inspiring article. It gives me strength. I have cancer but not terminal. But nothing's certain. You write beautifully. It's a joy to re-read it. Death is the tricky area. I'll happily talk to you about it. I'm old and have had plenty of time to think about it. You being young, I understand there may be a kind of fear of something unknown. I wish these last weeks give you some joy, and may you somehow get to see the loved ones again.

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  24. Hello Elliot,
    I just stumbled upon your article in the Guardian and I am so glad I stopped scrolling through my horribly dull feed with the ever-same news and read About your remarkable story and your point of view regarding the current situation.
    I am trying to find the right words for this little text, mainly because I'm not a native Speaker and the only experience I have answering to blog articles was in those horribly unnecessary (as I thought back then, silly me) tasks where we had to articulate a blog comment for a number of generic topics nobody really cares about enough to actually leave a comment (jk but you get the idea haha).
    But with you and your article, I feel quite different and I really want to say Thanks on behalf of all those who have been focussed on all kinds of other things over the course of the last few days. Thank you for reminding me to call my Grandma more often, and thank you for your honesty and humour. The moustache comment was top-notch, thanks for making me smile a genuine smile at the end of the day :)

    I hope you beat the odds and recover, I would love to read more from you.


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  25. Isn't it thought provoking how at a point when we are all physically isolated from each other, that such deeply beautiful and moving words have brought people from across the world to this blog? My mother died two years ago after 5 years of battling an unusual form of cancer and I have rediscovered both her strength and vulnerability in your words. Whilst your separation from friends and family is heartbreaking, know that you have had a profound impact on numerous strangers. Thank you.

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  26. Dear Elliot,

    Like so many other comments here, I came to your blog after reading your piece in the Guardian.

    I am a complete stranger and I would like to thank you for your grace and dignity, your courage to find and live life despite the certainty of death.

    Despite all these, I permit myself to believe that life is so mysterious and grand beyond our understanding, and that miracles can and do happen

    I wish you well.

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  27. Please write more if you can/wish. Your article was saw real and real..you're refreshing and I hope I see your name alongside a book title. Much Love! Thank you for being so strong..when so many aren't and hide away from our fears and worries

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  28. Hello Elliot:

    Like many others here, stumbled upon your article on Guardian, and just would like to share my appreciation in your blog.

    Thank you so much for sharing your experience, and joy and pain at this difficult time, and thank you for reminding us how each day of life should be treated like the greatest gift ever.

    Wish you all the best in each of the new day, and hopefully you get to spend as much time as possible with family and loved ones, in person or remotely.

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  29. I simply don't know what to say. Your words deeply touched me. I simply wish you a good transition, and I hope you will still be here when all of this is over. Sometimes, life simply want to carry on. I read about your story on Guardian. Simply put I have no words, just wanted to stay virtually at your side.

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  30. Elliot, what a wonderful human being you are. Your Guardian article will stay with me. Whenever this madness is all over I will sit in the warm sunshine of a beer garden and think of you. Thank you dear man x

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  31. Elliot I hope you won't be alone. Keep making plans and please let your friends support you. I will keep you in my thoughts and prayers.

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  32. Dear Elliot,
    I've been trying to write this for the last hour because you filled up my heart.
    I read The Guardian article and then went on to your latest post.
    I know that once one stops raging against death, a grace comes. We don't welcome it in, but we find a way to co-exist, peacefully - most of the time! I've seen it and I heard it in your words.
    Everyone's situation, their right and wrong, is individual so I hope it's okay if I tell you a little about what I found. Your description of your scans - your right kidney and lungs - I am the partner of another man, James, who heard those words. I've learned a lot; if words are too hard to say, they don't need to be said because we ALL know in our hearts when we love and are loved. These articles are so very full of your humanity, and more importantly, your love. Be reassured.
    Maybe don't put pressure on yourself to do some things if they feel hard. You said that you hoped that the coming weeks/months would be filled with a pure enjoyment of living and everything it entails - it could be enough for you to just do that??
    I learned that the people who offer help want to give it, you privilege them by taking it. People are far more capable of hearing our sadnesses than we think - I was amazed at the breadth of other people's shoulders.
    Your living has been phenomenal. And in a smaller way than being in Colombia and surveying all that monumental beauty, you are doing exactly the same thing in your flat. The beauty of the small things.
    I wish you well. I wish you joy and I KNOW that you will find your way through your time and you will find your 'good'. Your character shines.
    You are strong and I promise you, that in the moments when you don't feel it, others will help you. You would do it for them and they will be privileged to do it for you.
    I'd love to hug you but instead I'll send a wish into the world from Co. Kildare to London. Reach out the window and catch it ;o)
    Take care of yourself Elliot, Anna xxx

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  33. Hey Elliot, I read the Guardian article - and found my way here. I send you Love from India and I'm sure for everyone who read the article - hundreds more would not have been in a position to locate this blog to connect with you. I'm for some reason reminded of the following - Carl Sagan's description of the "Pale Blue Dot", a book I read - which left me crying "When Breath becomes Air" by Paul Kalanithi - who found himself in your shoes so as to speak - and we all are in some way or other and "The Emperor of All Maladies" by Sid Mukherji. I do hope you are able to enjoy food and drink and I'm glad you got to travel - it is more than most of humanity manages. I'm also glad you wrote that piece in The Guardian. Affy, Murali.

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    1. Hi Elliot,
      I too came to your blog via your Guardian piece. First of all I want to say that I only want to offer some comfort; you are entitled to do what you want with these words.
      Second, what a lovely name you have & it has a special origin.

      We are all living in distressing times, though few of us are facing your imminent prospect, but we are evaluating life & what it means. The horizon is darkened the world over.

      The world is a marvel, few of us want to check out of our time here. Why is that? Why can't we just let it go?

      An ancient writer had this to say, "..He has put eternity in their heart; yet mankind will never find out the work that the true God has made from start to finish."

      Why have a desire to live longer (if we can't) but we all have it for part, if not all, of our lives.

      The Bible explains that death wasn't created to be part of life, how it came to be part of life, & how it is shortly going to be erased. You will find more information at jw.org

      I hope you find peace & comfort whatever your beliefs. I personally am awaiting the resurrection of my son who died at one week of congenital issues.

      Death is hard to deal with & your death will leave a dreadful wound in the hearts of those that love you.

      Why does something natural pain us so much? Or is it actually something that shouldn't be part of life?

      Take care & I hope you resolve the things that you want to.

      Fiona.💙😘


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  34. Your Guardian article was so powerful it will stay with me forever. Wishing you many moments of calm and happiness. Whichever way you deal with this is completely the right way xx

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  35. Hey Elliot, I was thinking of you today while watching the fireworks display that disney have posted. You should watch it it's so magical!

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  36. Elliot, you are an incredible person and a wonderful writer. Your Guardian piece and this blog are so powerful and have truly changed my outlook on life. Your time in Colombia sounds just wonderful too, what a great experience to make that trip. Sending love from a New Yorker who has been very touched by your words <3

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