August 19, 2002
You Ain't Dead
Alexandra Andrews and Barbara Jo Johnson
- 1. The diagnosis horror will pass.
2. Don't be afraid to ask for help. Be specific and not shy. Remember the satisfaction that you get from helping a needy friend. You can give others the same privilege. People are usually eager to give you rides, accompany you to doctors and take notes, care for children or buy groceries. Give them the opportunity.
3. Thoughts on oncologists:
- A. Find the oncologist that is right for you as a metastatic patient. Some oncologists are better at dealing with the treatment and psychological issues unique to metastatic disease than others.
B. A relationship with an oncologist is long term, and needs nurturing from both parties; just as any other relationship. Don't be afraid to tell vour Doctor what you need. This is the person you are going to be with for the rest of your life. Hopefully many years but remember this is the person who will help you die.
C. Trust your instincts. Find a Doctor that you like and trust. Things may be rough at first as you do not know each other. Remember that the early discussions are grave and difficult for the doctor too. They may not be perfect in them.
D. Have an understanding with your doctor about such things as returning phone calls promptly and having personal attention from them. What about appointment times? Will the doctor be prompt or keep you waiting for hours. These are important when you are physically ill or in great pain.This is a two way street. The Doctor must be attentive and respectful to the Patient. and the Patient must show respect for the Doctor's time and feelings.
E. Check out the Doctor's support staff and facilities. Will you be comfortable where chemotherapy is administered? Meet the oncological nurses that will be involved in your treatment.
F. Do you know what to do in an, emergency and who to call?
G. Where will you have your tests, and how will you get the results?
H. When you have key meetings with oncologists, you should be prepared with questions and any relevant medical information that the oncologist does not have. Keeping a written history that can be presented to all doctors is very helpful.
I. Remember! Your doctor is not your internet researcher. Many cancer centers offer help on internet research. Use your support team to look up information for you on the web.
J. Do you and your doctor agree about clinical trials?
K. Be prepared. If you need forms filled out by your doctor you fill them out as much as possible ahead of time. This will help expedite matters.
- 4. Prior to any tests, you should get a description of the tests, how long it will take, special requirements (not eating, drinking, preparations, clothing, transportation, etc., and any recovery or side effect issues.
5. Medical people will do a lot of things - good and bad. Don't be afraid to assert yourself if you are not getting the attention or care that you feel you need. Guilt has no place in this determination. You are not a bad person because you ask for more or for something different.
6. If you feel something is wrong call your Doctor. Don't be afraid to bother them.
7. You will probably he deluged with treatment suggestions from friends' relatives etc. (i.e. Put blue rocks under your bed - don't put the purple ones. They will kill you for sure.) These people really want to help. However we recommend that you think through what adjustments, if any, to your lifestyle. that you would like to make. Then don't second guess yourself: Nobody knows the answers. Find where you feel the best.
8. Regarding statistics - no matter what they are there's always one in so many that survives There is no reason it can't be you.
9. Perhaps you will want to explore complementary and integrative therapies.
10. Consider recording key meetings with doctors.
11. Don't forget to continue with regular checkups. Even cancer patients can get colds.
12. Regarding teams
- A. Who is on your team (pharmacist, surgeon, oncologist, radiation oncologist, internist, gynecologist, urologist, nurse, medical social worker)
B. Who is the team leader.
C. How well and how often do the members comrnunicate?
E. How does your Doctor respond when you seek; second opinions
F. Do you maintain records to ensure each team member is properly informed and updated?
G. Keep track of all your medications. Who will you ask about drug interactions?
- 13. Keep copies of the films of scans/ biopies etc. Taking them to subsequent tests may speed the results (This is true even if the prior tests were in the same hospital.)
14. Find the support you need. This may be personal or on-line support groups such as available from http://www.acor.org/ or It may be friends' relatives, partner etc. It may be many people; it may be one person. Just know you necd support: and actively seek it out.
15. Get retested using your new tumor. Cancer cells change and become resistant to various chemotherapies There is a good chance that your metastatic cancer has changed characteristics. Also some earlier tests may have been defective or not read correctly.
16. Learn about the various drugs you will be given. What are the side effects? Will your doctor listen to you, offer constructive suggestions or pooh pooh and dismiss your physical reactions.
17. Realize some doctors will feel the need to give you the "By the way did you know you are dead lecture" It is a great mystery as why they think this is helpful. What is the point?
18. When those around you or treating you talk to you as if you are a ghost. Remember this and say it, "I Am Not Dead Yet!" Some of your friends and family may disappear because they are afraid or can not bear feeling helpless.
19. Take the time to think about your decisions. You do not need to rush into treatment. The survival rate between starting treatment early or later in metastatic cancer is a few weeks. Perhaps you will choose to have no treatment.
20. Above all! Live the best you can. Selfishness can be good; caring for yourself is your first priority. You will be surprised at how open this can make you to others and some special experiences.