Chapter 2
Living with a Stent

Chapter 3
Living with Palliative Care

1)
Introduction
Background
Endoscopy
2)
Initial Diagnosis
3)
Telling the family
4)
First Appointment
Taking the tests
5)
Second appointment after tests
6)
Treatment -Chemotherapy and Radiation
7)
Remission
8)
Coping at Night
Coping with Fear
9)
Relationship with Doctors
Keeping Track of Medications
10)
Deciding on a Stent
Conclusion

Last Revised, 05-Nov-2002
Copyright © 2002

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First Appointment with Kingston Regional Cancer Clinic (KRCC)

        Before your visit to the cancer clinic, make sure you write down all the questions that you want to ask or they will be forgotten the moment you arrive at the clinic. I found arriving at the Cancer Clinic for the first time to be very trying because it brought home to me in a very real way that I did in fact have cancer! I was fortunate to be sent to KRCC, as it is recognized as one of the top cancer clinics available and for EC probably the best in Canada. From the very first, both my wife and I were treated as individual people, not just cases, by all the staff we had contact with. The way we were treated did much to relieve the stress and fear. My visit with Drs. at the clinic was February, 9 and other appointments through the rest of the month.

        I found that having my wife with me on all Dr. visits, and later through the treatment visits was an absolute necessity for both my mental health and hers. This way my wife had the same information I did and was able to ask questions on things I had not thought of. We both found knowing the true situation much better than worrying about the unknown. I found the support of having my wife with me of immense value.

        I was horrified by one patient in the waiting room explaining to me how he has managed to hide the fact he has cancer from his wife and family and was worrying about how to continue hiding it! I feel trying to hide things from your family makes it harder not only on them but on yourself and can result in a loss of trust.

        The first visit we were told what tests would have to be done and what courses of action could be taken depending on what was found during the tests. Take note of what is said and give some thought as to what courses of action may be open to you. Do not be afraid to ask about what the tests entail and anything else that may be frightening you! Be prepared to discuss them with your spouse.

        After the tests are in, and the options available to your are known, you and your spouse must  be prepared to make decisions. The Drs. may give advice but the final decision rests with you and your spouse. As a course of treatment is started you must take an active part in your treatment. At this time my wife and I spent a lot of time looking up all the information we could find on EC and cancer treatments. Having a computer background, I made extensive use of the Internet where I found some very good information for patients. But be aware that the information on the Internet can be absolute nonsense and even harmful!

        There are cancer support groups and mailing lists on the net, some devoted to EC specifically. The support groups on EC mainly consist of people trying to outdo each other with the worst horror stories or flogging the latest quack cures or drugs. Stay away from the Internet support groups unless you really want to depress yourself and your family! I found nothing of any value on the support news groups or support mailing lists.

Taking the tests

        I was slated for an upper gastrointestinal series (upper GI), a CAT scan and bone scan (Jan 13 1999). Again I looked up all I could about each test and my wife came with me for moral support, although none of these tests caused any discomfort. (I still hate the taste of the barium and dread the cold tables they have you lay on!) I asked questions about the tests of both Drs. and technicians.
 
 

Contact
livingwithec@yahoo.com

Note: This email address is only occasionally checked, and due to volume, I am unable to respond to all messages. Nevertheless, feel free to send your thoughts, experiences, or comments.