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CancerLynx - we prowl the net
August 7, 2000

Ernest MacGillivray

The Permission To Be Less Than Perfect
(In answer to a question, "How do I make my husband understand?".

Sorry, it's not that simple.
Going back to first principles might be helpful. How does your relationship work? What is the traditional division of responsibility in the relationship? What do you need from your husband and how do you facilitate the necessary support.

What a lot of folks in relationships end up doing in a crisis is to ignore each other. Each is struggling alone, perhaps not wanting to burden the other, or not wanting the burden of the other's emotional baggage. Stress plus poor communication can kill a relationship.

- You have to talk. Keep the channels open. - You have to give each other permission to be less than perfect. - You should make it clear what you need. The patient's needs come first. - If the husband does not get this, there is going to be trouble.

If there are things you cannot effectively manage on your own, consider assigning these to your husband. He may not be the best choice for a task, so talk it out. Find a way, but perhaps give him the option to perform things that you need done.

Don't forget, we are co-respondents in all of this. Even if we do not understand or seemingly cannot feel your pain, we have plenty of fear and pain of our own to contend with. We may just not want to burden you with it.

- Give us something to do. We need to help. - Remind us to take care of ourselves so that we will be better able to cope and take care of you. - Remind us that no matter what happens to you, we have a life to live.

The Permission To Die
Dangerous thoughts below.

A few weeks after Nancy was diagnosed she took her sister and I aside, separately, and told us we had to give her permission to die. Right then. On the spot. She said, "You have to get the death thing out of the way, so we can get on with living. We can't be worried about dying all the time. In fact, we should not waste valuable time on dying at all."

Works for us. I will grieve after she is gone. Not before.

Permission to Go Now!
(In answer to a question about denial)

I have been thinking about your question. As someone wrote, more information would be helpful. That said, hold on to your self because this is going to hurt like hell.

Here goes. Your friend may or may not be in denial. My wife Nancy used to laugh and say, de nile, is not just a river in Egypt. Either way, it may not matter. What does matter is how we choose to live our lives in the interim. The week she was diagnosed, Nancy took me and her sister aside (individually) and asked for permission to die. Right then. Before treatment even started. We understood her request and agreed. Many other folks did not; they recoiled from the notion that she could die from the disease. Fine. They prayed a lot and it helped them.

Nancy and Elizabeth and I had a pact. Nancy could quit and she could die when she felt like it. Until then, we had a great life together, without regret.

What Permission Gives You
Our hope was always to be able to enjoy life every day, regardless of the medical circumstances. In the end, Nancy decided to forego treatment that might have extended her life, in favor of just living her life to the fullest every day. She was able to do that and lived life on her terms for all but the last few days. We did not get the result we truly wanted, which was a long life together, however our most important hope was fulfilled in that she lived her life fully and deliberately every day.

Time from diagnosis of recurrence to her saying, "I want to go", was 6 months. We suspected she had a recurrence from symptoms discovered two months earlier. Most folks get a better result than that, but in the two years since Nancy's original diagnosis, she spent more than half of her time out of treatment. For us, the glass has always been more than half full.

As a consequence, we are not overwhelmed with feelings of failure or loss. We just cherish the memory of an extraordinary woman who did extraordinary things. We are Ernie (45), Stu (14), Duncan (11) and Nate (8), and we are fine. Nancy remains the source of all our smiles.

There are lots of new chemos and other treatments which can hold things at bay, without destroying quality of life. There are also high dose options in their various flavors. There are minimum interventions and alternative therapy approaches. Our formula was to never give up hope; to consider the options, advantages and disadvantages, make choices that made sense to us; and most importantly, to live deliberately.

Ernest MacGillivray
August, 7, 2000

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