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CancerLynx - we prowl the net
May 15, 2000

Nancy's Rules
Ernie MacGillivray and Elizabeth Hamilton
In memorium, Nancy Hamilton
born 20 May 58 - died 13 May 99

Nancy lived with Inflammatory Breast Cancer for two years. Rules evolved as we went along and her sister, Elizabeth Hamilton, wrote them down for your pleasure.

To the rules I would add that the three essential ingredients for our success were:
a. Empowerment (the patient)
b. Advocacy (caregivers can do this, but see rule 4 and 5)
c. Humour (the gods have a sense of humour, so should we)
Nancy's Rules
- Information first, decisions later.
Corollary: If you need an answer now, the answer is no. This is a rule to prevent doctors and others from trying to get a decision without providing full information. It helps retain control of decision-making when things got tough.

- Five minute plan; expect change
We reserve the right to change our minds up to five minutes prior to any event.
Corollary: We do not have to plan more than five minutes ahead.
This came out of

    - (a) chemo brain and the inability to do long-term planning; - (b) the constantly shifting terrain which rendered any planning on our part useless; and - (c) surgical protocols.

We figured that the decision to go with surgery could be changed up to the point where the surgeon started applying the bristle brush to fingernails and hands -- about five minutes prior to surgery. It seemed like a real shame to waste that level of scrubbing, so agreed that if fingernails had been scrubbed, we would not turn back.

- Rules: we make them up as we go!
There is so much that is outside your control; the disease itself, the reaction of other people, and the effects of drugs and treatments. This rule makes it possible to adjust as you go and retain control where you can.

- Attendance and participation are dependent on good behaviour [esp. for Elizabeth Hamilton and Ernie MacGillivray]
We were the team, not the star player.

- Nancy rules! All decisions are as with royalty, but without the jewelery

- Nancy remains in control at all times (and gets to drive). Anything she wants - She gets. No one else had the side-effects, no one else had to endure testing again and again. Nancy set it all up for us, gave us all a role, and reminded us how sucky it all was.

It was also the rule that gave us humour in the waiting room; she banished gloom from the surface of life and concentrated on truly living in the moment, creating irreplaceable memories as she went about the business of life.

- It's about today
Corollary: the Mack truck may be just around the corner.

This was what kept us going, and helped to ensure every day had something good in it. This rule came into use when I mentioned my distress over Nancy's illness to a colleague in Halifax. Having had a close brush with serious illness, Marie said:

"At least Nancy didn't get hit by a Mack truck. You still have time to live, and enjoy the best of each day."

About this time Nancy's family physician, a tri-athlete, was run over by a motor cycle while cycling. He died in the ambulance, leaving behind a wife and three young girls. No one would have bet after-tax dollars that Nancy would outlive her Dr. C'est la vie.

That is when we decided that Marie had a point; there is no guarantee in life that any of us would make it on the long haul. It *has* to be about today, not about tomorrow, or the next day--the Mack truck may be just around the corner for any one of us.

Of course, there were days when Nancy *looked* for a Mack truck and would not always check both ways before crossing the street, but those moments were few and far between.

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