The journey has ended

Our beautiful, wise and very brave daughter left this world at 1:15 this morning. It was not an easy exit. But it is a beautiful summer solstice morning - a good day to start a new journey. We hope she finds peace and light and we can only be grateful for an end to pain.

I'll write more later -

Eileen's Mum


I am writing this for Eileen as she is no longer able to communicate. She is in hospice now - has been for the last three weeks. She has not been able to post again and the last one was difficult for her - obviously the loss of privacy and dignity is uppermost in her mind right now. However, she is no longer able to use the lift so is confined completely to her bed. She is sleeping much of the time and eats very little. This is a terrible process and her insurance company dragged it's feet in providing the necessary equipment until she was beyond any benefit it could have provided. However, her care givers here are unfailingly kind and try their best to keep her as comfortable as possible.

The hospice Eileen is in is lovely and she has big sunny room with views of the gardens and birds feeding their chicks in a birdhouse outside her window. She has had many visitors coming to give her hugs and to tell her how much she has meant in their lives. She says to send her love and gratitude to all of you who have given so much of your support over these past years - it has done so much to make her last journey bearable. If you leave comments I will try to bring them to her.

 And thank you so much from me too for being there for her.

Eileen's Mum

Cancer and Dignity

This part is difficult to talk about, but I did promise honesty.  If you want to leave yourself with a more dignified or romantic idea of me in your mind, you probably don't want to read this bit.


 I have come very suddenly to a condition that is not only painful, but excruciatingly humiliating - of the two, the humiliating lack of dignity and privacy is much more difficult for me to deal with than the pain.  The people here are lovely and kind, but that gives me no relief, no privacy, no dignity.  To know that things are only going to get worse instead of better is horrible.  

They don't talk about this sort of thing in movies.  They don't warn you about this sort of thing in the doctors' offices, either.  You expect pain, you sort of know that you are going to end up wearing adult diapers - you know you are  going to end up being wiped up a bit on occasion, that you might end up wetting your bed.  I cried the first time I stood in the middle of the kitchen, unable to stop the little flood of fluid that poured and spread across the floor.  

Cancer does not care about your dignity.  

When you have cancer, you end up having to take all sorts of medications, many of which are constipating.  So you have to take laxatives and/or stimulants to make sure that you have at least one bowel movement a day, or things get very uncomfortable very quickly.  Keeping track of that sort of thing is a pain, but it's better than the alternative...

When you have the kind of cancer that causes paralyzation and numbness, things get worse.  You can't feel what is happening, and you don't have the muscle power to get what is down there out on your own.  You have to take medicines that soften things as much as possible - both oral meds and the sort that require other people to physically interfere.  And then when you sit on the commode, people have to physically interfere again.

There are all sorts of concerns in this situation.  First of all, of course this is a very intimate and humiliating sort of process.  And you don't get a choice about who performs this service for you - you take who you can get, which for a woman means that sometimes this involves strange men. It is difficult to be brought to a state of infantile dependence on other people for such an intimate process.

Cancer does not care about your privacy.

In order to use the commode, especially if you are paralyzed and cannot get to it on your own, you have to be hoisted by a lift, which has to be managed by at least two people.  The process is physically painful, as they end up having to use slings and straps to lift you up and set you down, which presses your limbs all together tightly as you are hoisted through the air, and your clothes get bunched up under you and have to be pulled out from around you in order to get them out of the way when you are on the pot.  This pulling about is painful and humiliating in and of itself, but not as bad as the next part, which requires these relative strangers to physically assist in either insertion or abstraction of material - and yes, finally I have reached the point of Too Much Information and I will pull a merciful curtain on that particular issue, relying on your imagination to fill in the details.  

But the fact is that at that point you often end up having to wait for minutes or many hours for meds to do their job.  There's no nice schedule to let you know when urgency is going to hit.  So first of all, you are dependent on your helpers to show up with a lift, which then takes time and a lot of fussing around to get you up and on to the commode, and it might be too late to prevent a mess by that time.  And then the process itself, and the cleaning up, might take a great deal of time, might need to be repeated a short time later, etc.  Which means that all visitors need to be shoo'd out of the room, and of course they know what is going on, and it's very inconvenient for them and for you.  Not to mention humiliating and painful.  

Cancer does not care about your pain.

Pain and Kindness

I found this one -

My adventures in hospital have been a mixed bag, in that I've had quite a bit of pain in my leg and hip and sitzbone - and unexplained swelling, which has been difficult to resolve - and we had that trouble with the Nurse of Doom.

On the other hand, the support staff - the social workers, nurses and nurses' aides, palliative care people, physical therapist and occupational therapists, the people from the hospice program - have been absolutely fantastic.  During a time that has been chaotic, rushed, confusing, full of unknowns and unknowables, full of demands for attention and fears of loss... we've been surrounded by people who obviously have a real Calling.  They have been incredibly gentle and kind, consistently helpful in the face of our confusion and dismay and fear, and unfailingly patient with our anger and sadness.

To top things off, they did their best to mitigate the damage done by the Nurse of Doom; instead of leaving us at the brink of a holiday weekend with nowhere to go, they went out of their way to help us with making arrangements for the next stage of this journey; it's such a comfort to know that when I leave this hospital, I will actually have a place to go.

If you have the need to go to a hospital in the Twin Cities, and you have a serious illness, Abbott Northwestern is definitely a good and caring place to be.  I am told by my nurses that it is also a good place to work.