Helping me prepare to die

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Today I had my first visit from Pierre, one of Burnaby's home care nurses. They haven't needed to visit my house since way back in the summer of 2007, when I was just home from my major cancer surgery and still largely stuck in bed. I'm not like that now. Rather, today was more of a planning meeting.

Few people my age (41) need to plan how we'd prefer to die. Many, whatever their age, would prefer not to think about it at all. However, for me, since I know it's happening pretty soon, I'd rather try to minimize both the burden on my family and whatever suffering I'll have to undergo. That takes some preparation, such as evaluating hospice care in Burnaby or Vancouver, considering when to implement a Do Not Resuscitate order in the future, and so on.

Complaints about Canada's health care system are routine, but I have to reinforce that my experience throughout my cancer treatment, and now after it, has been remarkably good. Because ours is a public system, and I have had excellent support from my extended health plan through work too, my family and I have faced absolutely minimal out-of-pocket expenses. We paid nothing for today's home-care visit, during which the nurse and I talked for well over an hour, for instance.

In recent decades, British Columbia's Ministry of Health has begun to approach death as an integral part of its mandate. I appreciate that, because it gives me a context in which to organize my next year or so. My life today is no longer so directly about trying to manage and beat my cancer, but to take some control over the process of dying that the disease has forced me into. Today was a calm and reassuring part of that process, one that need not be as terrifying as we might assume.

17 Comments

i'm just always so reassured about the health care benefits you guys have. really amazing and thank god you are availing yourselves of them. a good hospice nurse is worth his weight.

Derek, your strength is amazing. Stunning reads. I'm usually left not really knowing what to say, even though I wish there was something I could say or do. I realize that there's probably nothing anyone can really say to provide any level of assistance or comfort for you and your family, with the exception of words from someone who's going (or has gone) through it. I wish a Merry Christmas for you and your family; you're in the thoughts and prayers of many.

I continue to be honored to be your friend, and to be grateful for your willingness to share your journey. Give my love to Airdre, and both of you have a Merry Christmas and a Happy New Year.

Hi Derek,
I don't even know you, except for what I've read on your blog and on twitter. But when I read posts like this one, it makes me feel so... I don't know, angry. You're a good guy and you have a cool wife and really sweet children who need you. Why must this happen to you? Why must this happen to anyone? My fiance died a few years ago, and though I do not want to die any time soon, I take so much comfort knowing that when I do pass away, I'll be with him again. Its just about the only thing that gets me through the times when I miss him so badly I can't stand it. But, I know from reading your blogs, that you don't share the belief in an after life, or Heaven. Everyone has different beliefs about what happens after they die, and the truth is, none of us truly, truly know. Do you believe you'll see your loved ones agian? If not, what is your thought process facing all this? How do you look at it? Hearing your opinion helps me understand a bigger picture and broadens my perception. Its so scary, Derek. Your attitude and the way you're facing it all head on is really amazing. It would be so easy to completely freak out and run away. Thank you so much for writing about this.

Derek,
Your posts on facebook really stand out from all the usual, for obvious reasons. I promise to keep reading as long as you keep writing. Will always be wishing the best for you and your family as things progress. I'm sorry my words are so trite compared to what is happening, one day I will probably know better what you are sharing now. You are courageous and a light...

Dear CT.
Your comment resonated with me b/c I lost my fiancée in April really suddenly. I totally relate to ur thought of seeing them again. Derek you should make a pact with your family now that if there is something after you'll give them a sign. I wish i'd had the chance to have that conversation.

I'm not sure which is easier or harder. Suddenly or what you Derek are going through. You are very courageous to share your journey. Thank you for doing that. What's especially cool in reading these posts is that none of us are alone. This is all part of the human experience. Here's what I read the other day that gave me some peace. Hope it does for you too:

This is love
To fly towards a secret sky
To cause a hundred veils
To fall each moment
First to let go of life
Finally
To take a step forward without feet

Rumi

I think some kind of death planning is good for everyone regardless of age or health. I had a close friend suddenly die last year and they had no will or anything so their ashes ended up on the shelf of a person they hated in a house trailer they deplored... I'm young and healthy (thank evolution), but it gives me so much piece of mind to know that when I die my ashes won't be on some horrible relative's trashy shelf sandwiched between a Barbara Cartland novel and a bag of remotes. This is why God invented bylaws and municipal ordinances...

You don't know me, but I know of you through connections to EAC. I am saddened to hear that your cancer has taken you to this point, but I am gratified to hear that the palliative and end-of-life care that you are experiencing is positive.

For almost a year I have been working on a project that involves training medical and other professionals in palliative and end-of-life care. I have learned so much about the importance of this stage and what a difference it can make to one's humanity and to those who will be bereaved.

I wish you and your family and friends all the best.

Happy Holidays and may the New Year bring unexpected joy and love and strength and knowledge.

Hello Derek,

An EAC member posted a link to your blog, and I have read several posts.

Palliative care is about dignity, comfort, and choice. My mother worked in such a program as a volunteer coordinator, and a friend died in a hospice that is known for its excellent care.

Sharing your journey will help others. Extending you peace in the journey and may you be blessed with excellent continuing care. Carolyn

Thank you for sharing this difficult time of you life. You're strength is reassuring and calming and your willingness to explain your process and approach has had a positive affect on how I approach my end. Thanks.

I am sure you help a lot of people with your posts, Derek.

This week, while I was staying in St Paul's Hospital, I happened to be in a ward with a couple of very sick guys. They were visited each day by palliative care counselors in preparation for their moves -- in one case to St Paul's own palliative care ward, and in the other to the Dr Peter Centre. I was always impressed by the compassionate realism of these workers, comforting and informative without any false hope.

We are indeed fortunate to live in this time and in this Province.

Moments ago, I learned about you through the warm and caring words of Leo Laporte and Paul Thurrott at the serene close to their yearend review. Yet, you've been part of a longstanding weekly experience where I laugh and learn so much. Funny how 1 and 0 now extend and bind community to the Human condition.


After reading your poignant post and the ensuing comments, words, ...words, ...well, words are difficult to muster above my emotions just now… I am reminded of Thales, the pre-Socratic philosopher who painted the first brushstroke in what today, with the many contributory strokes like Conservation of Energy and Theory of Relatively, is a richly textured community painting known as, The First Law of Thermodynamics.

At its heart, it states that Energy – thus, Matter (Einstein’s brushstrokes) – can neither be created nor destroyed; it can only be transformed from one state to another.


So, when it’s my ontological time to change, though with wobbly knees I take courage knowing that which I’ve learned from my predecessors, created with the help of others, and taught those that follow, remains alive in our human community borne from the Love, intimacies and experiences I’ve created along the way.


Merci pour vos cours si sincères.

Peace & light,
Peter

-- member of the TWiT Army

I heard the news on the latest IHR show. I've appreciated your positivity and attitude throughout the battle with cancer, and it's good to see that you're still in good spirits.

My prayers are with you and your family.

Derek I don't know your particulars, but do know of many that had been pronounced by their doctors as terminal and sent home to die who recovered by exploring alternative healing. I also don't know if you believe in alternative healing methods or have already researched and explored them, but I thought I would put it out there anyway.

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Derek,

Since the shock of reading "Helping me prepare to die" on your RSS feed, I've been trying, unsuccessfully, to find the right words. Some others here have done well. I remain at a loss. Please imagine me just sitting with you, there to listen and share the final months, weeks, days, which I sincerely wish I could do. Thanks for the many years of long-distance camaraderie. The many neural pathways you've made in my brain will endure, as a tribute to you, as long as I do.

All the best,
Dave

As someone who has lost a number of people close to me (my husband at 38, from cancer, being the closest), I appreciate your frankness and pragmatic approach to terminal illness and death. People who had not experienced such loss turned away from us, as if illness and death were contagious. There were people who didn't think we tried enough methods to keep him alive. I got an email recommending that he eat broccoli. When I authorized his transfer to the hospice, I was seen by some as giving up.

I believe in preparing for an end with dignity. As others have said, you're helping people by writing about these days and the steps you've taken regarding your health and well-being. Your words will outlive you, but it is a legacy to be proud of.

I wish you comfort and peace in 2011.

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