August 18, 2020
Pat C
Patient age
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Bladder Cancer

1st thing I wish I had known

If someone asks you to promise you will keep them in their home think long and hard about the implications. Particularly with something slow like bladder cancer. I promised this and in hindsight wish we had discussed the logistics while she was in better health. After going through the end stages I wish we had access to better pain control. Also, we should have thought more about the effects on everyone involved including the care giving team.

2nd thing I wish I had known

Discuss what she wants as the end approaches. Music, light, temperature, and who she wants to see when. My mother-in-law knew she was dying, I wish we had spent more time thinking about the environment and atmosphere she preferred. This extends to people, it is important to discuss who they want around and who the don't. Once they get to the later stages they won't be able to tell you and you might not have time/energy to be able to make complicated wished happen.

3rd thing I wish I had known (plus any bonus thoughts)

Journal! When you go through this and are sleep deprived you don't end up remembering the finer points of the experience. I would have cherished being able to share clear memories of exactly how things transpired. This goes for the good, the bad and the ugly. I just wish I had a record of the details before they blurred.

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