December 10, 2011

Stopping Treatment - Revisited

My choice to stop treatment is at the core of this blog and fundamental to my state of mind as I undertake this final journey and try to make the most of my days. So I feel compelled to periodically revisit this decision, particularly when I run into others who are either wrestling with the decision or have already made up their mind. Normally, these are very emotional discussions and, often, many of the individuals come across as conflicted and certainly stressed. It's an incredibly important area for all of us to understand, especially those whose life circumstances place them in the horrible position where they have to make such a decision.

When I first made my decision, I didn't feel it was that difficult for me. I think that was because I had been living with cancer for a long time, had researched the hell out of it and basically felt that I knew all I needed to know. And most importantly, I knew that it was my choice. I never once thought it was the doctor's choice and hadn't really thought about that possibility until I started reading articles about "never say die" doctors who will continue to present "choices" that are really not choices at all. Now, this doesn't apply to everyone. At many stages of a disease there are real choices of treatment to make with varying degrees of risk and potential benefit. But when you are at the stage where your disease is incurable, the only real choice you have is to continue treatment or to stop. Doctors will present treatments in very good faith that may have some benefit but that benefit may be very small. When presented as an option, many patients see the choice - to continue treatment or not - as a choice between continuing to fight or giving up. I don't, but I think many do.

I have spoken to a number of others in my situation lately and have found many who plan to continue trying anything that comes along with the hope - or maybe the belief - that it "might" help or even that it "will" help. There are even a few who refuse to admit that they are dying, perhaps because they find the thought terrifying. When I speak of my decision, I wonder if the others feel that I am giving up. We all say that it is up to the individual and bear witness to our right to make that choice, but is there an unspoken judgement there? Or do I feel some sense of guilt or indecision deep, deep, deep in my own troubled mind? Who knows? I don't pretend to, and I'm open-minded enough to consider that maybe I'm the one who has a problem with it.

Regardless, It is a very important decision and a real one. And clearly, it's not a decision you make and then move on. Whether it's through discussions in support groups, with your doctor, your own family or friends who have heard about something they think you should try, it can keep popping up from time to time and you have to deal with it. It's important for your caregiver, your palliative or hospice team and your doctors to know where you stand on this so they can interact with you accordingly. I've made up my mind to forgo further treatment and, while I may choose to revisit that decision from time to time, I am at peace with it and I don't need to be pushed into second-guessing myself. I'm thankful for their concern, but it's my choice and it's the right one for me. Please honour that as you would anyone else's choice to "keep on fighting".

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Bob said...

Dear Doug,

Well, you certainly sound a lot more confident in the "revisited" posting than in the previous couple!  I'm glad to hear you are at peace with you decision and I fully agree that accepting death is a very important step.  We're all going to die sooner or later.  My father died at the age of 93.  I'll feel lucky if I make it to 60.  There is only so much one can do to postpone the inevitable.  Some people even hasten the inevitable along and I don't criticize them either:  it is their choice, not mine.

Three years ago I found out I have melanoma.  It doesn't seem to be spreading very quickly but there are still very few effective treatments.  Very early on I realized that the biggest battle I would have to fight was with my own mind.  As a result I have invested a lot of time and effort in psychiatrist visits, in seminars on dealing with anxiety and in meditation.  This is now starting to pay off.  My state of mind is better now than at almost any time in the last twenty years.  The most significant thing I learned is to "let go" of as much as possible.  Not just physical things but also the past, cherished hopes dreams and goals, many beliefs, and of course the thoughts that bring on anxiety and misery.  In a couple of your recent postings you have listed all sorts of things you miss and things that worry you.  Were I in your position (which I am not, and please excuse this presumption) I would really work on those attachments.  There is nothing you can do about most of them so letting them bug you is really pointless - as if you didn't have other concerns!  I'm guessing that your family and friends would also encourage you to do this in the interests of overall tranquility.  I really cannot recommend this course of action too highly.  I have found psychologists, psychiatrists, mental health workers and (notably) Buddhists have helped me enormously in this respect.

If you would like to post any or all of this email as a comment please feel free:  I hope it is helpful.  I offer you my best wishes and all the comfort possible going forward.

Bob Bramwell

Doug said...

Bob.  Thanks for the comment.

One of the things I always wrestle with in writing posts is how they will be interpreted.  When I talk about things I will miss, things I have lost, they are very real to me.  It doesn't mean that I spend all my time in sadness and darkness.  In fact I think that I have done reasonably well in coming to grips with them.  However, I do think of them from time to time and they do contribute to my periodic bouts of depression.  I think this is normal.  I don't think it's possible or even healthy to go through something like I am without being depressed some of the time.

I have, however, studied much about the mind and spirituality and have used the services of psychologists, psychiatrists and spiritual advisors over the years (I have been on this journey for 9 years) and have benefitted greatly from this.  I am very glad that you have found help in this way and wish you the very best on your journey.

Doug Gosling

Dianne Gosling said...

Hi Bob. I am Doug's wife Dianne. Our family thanks you for the effort and time to you gave to write your view's on Doug's posts. I can't tell you how much it means to him to get responses to his posts.

I wish you well on your own journey with cancer. My beloved sister Judy passed away from melanoma 14 years ago at the age of 52. She was my best friend (2nd to Doug :)), confidant and surrogate Mom. I was one of her main caregivers. Judy found out about her cancer "after" it had already spread. I will keep you in my prayers.

Doug and I have been married for 34 years and I struggle every day with the thought of loosing him before we spend at least another 34 years together.

We both try to "make the best memories" we can every day. Some days, as you well know, are more difficult than others.

We talk about everything and I am always behind his decisions 100%, even when my heart feels lets just try "this or that" so I can have him with me longer. I want him to feel he can do whatever it is he needs to do to make "his" decisions...after all, it is his body that must suffer the affects of the different treatments he decides to take.

Doug never complains, which amazes me...with all the pain he suffers even with the meds he takes that are suppose to help with the pain. My sister was also like that. I feel guilty when I complain about my aches and pains, lol. I don't think my sister ever really accepted the fact that she was going to die. Right up to the end she continued to say she would be back teaching (she was an amazing teacher) soon. Maybe she did, in her own quiet way, I don't know. She was a JK teacher, very beloved by so many. When her school was rebuilt (after her death) they named the JK playground garden after her...what an honour.

Our daughter is getting married next Aug. and I pray Doug will be here to walk her down the aisle...I think that duty alone will keep him with us. :)

I find it hard to read these posts of his but do when I am alone.

Again, I thank you for your comment and know that you will be in my prayers.

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