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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On our own 
 
        At this stage, all that could be done was to try to keep the pain under control and eat carefully so as not to cause an obstruction. When the pain started to get out of control, a dosage adjustment had to wait until my Dr. could be contacted. One incident brought us to the realization that we could very well be left on our own.  One day for no known reason, I found that I could not even get water or any liquid down. After a few hours it cleared and I was able to take my medications. If the blockage had occurred during the weekend and had not cleared, I would have had to go to emergency to try to find a doctor who could give me morphine to kill the pain and to rehydrate me. Many hours would have passed before I obtained relief. My wife and I at this time really felt left on our own with no readily available support or medical help. 

        My morale began to drop as the days passed. No referral to Palliative care seemed to be forthcoming. We decided to act on our own and phoned Home Care. Within 3 hours a case manager came to asses our need. Within a few hours, help with paying for the drugs, and arrangements for support from VON Palliative care were set up and this gave my wife Greta or myself someone we could call in an emergency 24 hours a day for advice or medical help. At this time our Family Dr. had sent in a referral for me to a Palliative Care Doctor. Within two days all our main concerns had been addressed and the feeling of relief for both of us was immense. When you have been diagnosed with EC, take all support offered you and do not say, as we did, “I am not sick enough to warrant outside help yet” We missed out not only on financial aid but the security of having 24 hour a day support.

        The first visit with the Palliative Dr. resulted in an assessment of what stage I was at now. I was more than a little shocked at the degree the cancer had spread and that my options were really limited. I was aware to some extent of progress of the cancer but this discussion brought it out into the bright light of the real world. I could no longer hide in my fantasy world that the cancer was of no immediate threat yet. On the other hand it was a great relief to know that we had help near at hand. My medications were changed to stop the pain that had rapidly increased and interfered with my sleep and daily activity. Medications also were changed which appeared to allow me to eat some solid foods. As a result of the changes of medication, I was able to enjoy a family get together with no pain and even eat most of the “goodies”.
 
 

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