Chapter 2
Living with a Stent

Chapter 3
Living with Palliative Care

Sections

1)
Introduction
2)
On our own
3)
J Tube
4)
A set back
5)
Conclusion
 

Last Revised, 05-Nov-2002
Copyright © 2002

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A set back

        The day after family get together, I noticed that pain had increased and that it appeared that I had got a chest infection causing chills, pain etc. that in the past had turned out to be pneumonia on two other occasions.  I was able to contact the Dr. and get started on treatment within a few hours. Unfortunately the combination of all the stress, infection and possibly the antibiotics resulted in the worst pain that I had suffered up to this time. The medication supplied by the Dr. allowed me to get it under control. The change from a very good get together with my family to infection and pain caused me to become depressed. I saw the Dr. and he arranged for medications that I could bring with us on our trip that would help the eating, keep the pain away and he assured us we could still contact him or other member of the palliative team while we were away. At this point it became very apparent that having good medical support was invaluable. Without this support I would not have gone on the trip. The medications he prescribed allowed me to fully take part in the meals and social part of the visit. As it was both Greta and I had a good visit with my family out east and also to have long talks with my son on the way and gave me a chance to get reacquainted with him. The trip was important to me but not unexpectedly brought problems of its own. It was saying goodbye and realizing that I was getting much weaker and that it was now a matter of trying to keep a reasonable quality of life for the limited time we have left. For a few days, having realized that the medical fight with the cancer was over, I had an overwhelming sense of sadness that I would be leaving my loved ones so soon and feeling that I had been cheated out of 20 years with them. By that time, having good medical support at hand had alleviated the old fear of dying in the hospital on a machine in pain or slowly suffocating. This alone was a great help and left me with
trying to handle the growing physical weakness and hopefully get the moral strength to face life with my wife for what time we had left and not waste energy fighting fear of dying slowly on a hospital machine.

        Our quality of life now is in my opinion, reasonable and I can enjoy each day. There are good days and those that are rather unpleasant, but the big difference I have found since being on Palliative care is the Dr. attends to ailments right away, that although not serious in themselves are very uncomfortable. Because  I am aware that our time might be limited, everyday that is a “good day” is treasured and knowing
that those ailments that spoil it are looked after immediately gives us a great boost to moral and to the trust that I will be continued to be looked after.

        I will try to add to this paper for as long as I can, or as long as it might serve some purpose either to myself or my loved ones. I have not addressed religious matters as my own position is not clear to me. My wife’s faith is strong, and always has been and as a result it has been of great help to her. It is starting to “spill over” to me. That would be
very welcome, as I can do with all the help I can and having faith that we would be together again would ease my main concern, which is losing my relationship with my family.

        I have had my 63rd birthday and am having some trouble with pain control. It was decided to change to hydromorphone for better pain control. Although I was warned that the change would require a difficult search for the proper dosage, I found it harder than I expected and have been in more or less constant pain for the last few days. For the first
time I have become discouraged with my quality of life. In conjunction with the pain, I have found that I am considerably weaker and having more mobility problems. Any stairs are now a major obstacle and I now require more help from Greta in getting dressed etc. I am beginning to wonder why I am changing medications at this time. Maybe I should
have gone straight to a morphine type patch. It appears that the pain is now under control and I will see how I make out with my ability to write and function mentally.

        Well I now find I no longer can climb any stairs or get up from any low chair or the ground. We ordered a pneumatic seat lift that we hope will solve getting up from chairs. My neighbor has started to build a wheel chair ramp straight off the balcony from the front door over the garden to the front lawn. Hopefully I will be able to walk it or use
a wheel chair if necessary. I find it amazing that the neighbours jumped right in with help right away. I hope I can let them know how their help is appreciated.

        When we get these things done and tested and I will wait until this pain settles down before continuing the journal.
 
 

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