What if death wasn’t something to be feared, or fought? What if we could talk about death and dying as naturally as birth and living. What if there was a liberty in accepting the limitations of our human existence on this earth and freedom if embracing what it means to live and to die well?
These are the ideas that I have been exploring since my own sudden stage 4 cancer diagnosis just over 2 years ago. I have become fascinated with the language and narrative around terminal diagnosis generally and cancer specifically. The further along this journey I go, the more I am convinced that there is more to life than simple survival; staying alive at all costs is not the life that I want to choose.
With the advancement of modern medical interventions there seems to have developed a myth that all sickness should be curable, and that we can all live for ever. That death is always a lost fight or a medical failure. We seem to have lost the sense of the precious and fragile nature of life.
My own palliative care plan has so far included 3 major surgeries and 4 seasons of chemotherapy. But as time goes on, I am finding that I am less inclined to easily consent to the next treatment option that’s offered. Not because I don’t want to live, but because I want to weigh carefully the cost and the benefit. Living longer is not enough for me, I want to live well.
I have learned the hard way how long it can take to recover from significant surgery, how exhausting and stressful it can be for my young family, and how long it is before you recover a sense of yourself. A surgery that is going to take me three months to recover from needs to offer me way more than 3 extra months of life for me to consider it worth the effort!
So, my retirement project has become Dying Well. I am personally testing out an evidence-based approach to finding happiness and wellbeing, even as my body crumbles. Doing everything I can to feel well, be happy, and continue to live as myself. To take control of the decisions around treatment, to weigh quality of life as more important that quantity of life and to challenge some of the taboos around death and dying as I go.
Some say that I’m being defeatist or negative, but I have found complete liberty and joy in resisting the fight narrative of cancer. For too long our society has hidden away the reality of death and refused to confront it. We rush people to hospital and expect them to always come back ‘better’. When people die often there is a search for who to blame, or a questioning about what more should have been done. We campaign to eradicate every disease and sickness, yet we will all die of something one day. Our fragility and humanity seems to be denied as we seek medically enabled immortality. It breaks my heart to see the number of people spending their last days chasing after miracle cures rather than enjoying the miracle of the life they still have.
I don’t fear death, but I do fear losing my identity to the sickness that the ‘treatment’ seems to bring to so many. I’m not giving in or giving up, I’m just not wasting energy on fighting that could be so much better used gardening, laughing, walking, reading or simply being.
There is peace in this acceptance that allows us to have open and honest conversations about how, when and where I will die. I feel grateful that as I live my last days in the best way possible, my family have talked honestly about the reality of my death. I think we are as prepared as we can be. The end won’t be a surprise, or perceived as a failure. We know that my death will be sad and significant, but it feels important to find a way for me to die well and without trauma. This should be something that is possible for all of us.
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Your words hold so very much truth and wisdom, dear Clair! You have chosen the path that will lead you to freedom either way – a win-win solution perhaps! I am sending you much sunshine inside and out and bouts of happiness and meaning! ♡ Katja
Thank you for this, currently in remission from cancer but I dislike the terminology… ‘Ooh you’re so brave, Oh you can totally beat this, you’re such a fighter’. I didn’t ‘fight’ anything. An amazing team of medics gave me treatment. I didn’t have a choice but to go with it if my cancer was curable (which thankfully it was). I hate the thought that my friends that have died from cancer are somehow not ‘brave’ or didn’t fight hard enough..? I read a really wonderful book by Jenny Worth (wrote Call the midwife) called ‘In the midst of life’ which described her work as a nurse with palliative care patients and how now we have elderly people on life support or undergoing surgery to prolong life which has removed that gentle home death..we’re so far removed from the realities of death that we’re terrified of it. Anyway, great article and thank you. Sending you lots of strength/love/positive vibes.
Thank you for this. I have been looking for other voices like mine.
I’m stage 4 cancer – and I’m having lots of conversations about dying with my family and we have chosen no more aggressive treatment and now have the luxury of planning and loving and living with hope. Not cure but healing.
Beautiful. Thank you for sharing these insights.
Your courage amazes me to a subject which is very close to me and my family. I know I don’t know you that well, but I do know that Claire would be very inspired by you, as I am x
Clair your courage amazes me….it shouldn’t do but it still does. You are an inspiration to so many. I pray that God will continue to bless you in your journey of life and death!
Thank you for sharing your beautiful spirit. I don’t think I can totally relate to it but my 16 year old son had the same spirit. He battled cancer for 2 and half years and died at the end but was full of life and spirit all the way through his fight..
Claire’s story has brought me comfort, inspiration and a better outlook on how to live the life I have left. More importantly, how to prepare myself and my family for my death. I was diagnosed with ALS (Lou Gehrig’s Disease) on 12/14/17.
What a perspective about death and life! This is deeply spiritual. If the medical industry and the medical people have similar views, the whole medical care would have changed for better. It is sad medicine has become predominantly about prolonging life and missed the most important aspect of life. Ultimately, we all die of something which medicine could barely help. We all want to live longer but not sure what we are going to do with it and not sure how well we used the lives we had.
May you have all the peace and joy of life. My prayers with you
Dying well, I agree with everything you have written Clair, I think we could all become so much richer in our lives if we were able to be comfortable, open and even embracing of our morality…..I’m curious to learn more about how to do this with those we love?
I think it might be about being much more intentional in how we go about having these difficult conversations and, of course, that doesn’t happen without allowing ourselves to become vulnerable or worrying about causing extreme distress to our loved ones……..pretty tough emotionally!
Thanks for starting this conversation and sharing you thoughts on the inevitability of life…death!
I look forward to learning more and becoming more intentional in my own inevitable death, none of us know when this will be for certain so weaving conversations into our way of living seems imperative.
Dear Clair, You have written about ideas I have held for many years. As a Palliative Care Nurse Specialist I became involved with Hospice work as I felt that the first world had lost its way with dying. The war like langauge and the increase of some very good treatments as meant that death is indeed treateed like a failure. I believe that we are missing the language and the ability to have the much needed conversations with the patients and family. Your insight for you and your family are much needed for others. Thank you my thoughts and prayers are with you.
Thank you everyone for your lovely comments & encouragement. I’m so glad that this article resonates with so many of you, thank you for sharing your own stories & experiences.
Your profound wisdom is heart warming. So many need to read these words.
I am so grateful for your post. I have been privileged to journey with both family and friends as they live and have ultimately died with a terminal illness. I have been amazed at the different experience those individuals have shared. Some have gone to their death seeking the ultimate cure or answer whereas others have lived life to the fullest to their last days and deciding against extraordinary treatment. What I found the saddest part for some beautiful people is the fact that many friends disappear. Though I understand some people are not comfortable being around those who are ill or worse terminally ill one of the cruelest behaviours is to just disappear and not be around for their friends or family members. As an elderly person I am comfortable with the fact I too will die some day but sometimes I am bothered by the suffering that may be part of the dying process which I have seen happen to some. My husband and I have prepared our power of attorney for our care and our doctor has a copy in our file. We do not want any extraordinary measures taken. I am so grateful we have a hospice being built in our community because that is where I would prefer to spend my dying days not just for myself but to relieve the burden on my family and having them be near in a home like setting with caring staff and volunteers.
I knew from the beginning almost that i wanted to die well. The closer I get the more scared I am . Whatvibwasnt prepared for was the loneliness. No one wants to talk about it. They want me to scrape for every second of life I can get. I picture stress worry fear pain stress fear running clawing begging I dont want that. Noo[ooooo[oo[soooooo. Uh if I talk about dying I hear “oh dont talk like that miracles happen all the time , you’re not going anywhere…..” basically go back to your dark box and keep quiet, dont upset us with your dying talk we want to hear happy thoughts. No dont care what you want or needwe need something else.
A chaplain came by and I made a joke about dying, she looked at me like I should be ashamed of myself and also pity was there. In a nice voice if it’s possible I told her if she was going to look at me like that….”like what?” She said. And I reflected the pity shame look then said you will have to leave. I’m sorry I just can’t have people look at me like that . It’s ok if you can’t stop but you can’t do it here. She looked offended but she stayed and visited and it was a fun visit. She never came back I still feel guilty over that.
Today I’m scared. I do my best to be friendly cause I feel friendly, I like to hang on to that. It feels good to feel good.