My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Sunday, January 11, 2009

My words of wisdom to a newly diagnosed cancer patient.

I learned tonight that a family member I am close to, who supported me through my own cancer journey and who is my age, in her 40s and with a daughter still in high school, has just been diagnosed with cancer. Her mother died of cancer when she was a young child. She lost her father to cancer before he was able to meet his first grandchild. She more recently lost her step-mother to cancer. Then I was diagnosed with cancer. Cancer has traumatized her life already. Now cancer is back to terrorize her, this time on a personal and very intimate level. So far she is not accepting phone calls...but as soon as she is, I need to talk to her, to be there to support her as she supported me.

I'm trying to think of what exactly I want to tell her....so far I've thought of these things. They apply to all of us with a new cancer diagnosis, so maybe they will help someone else here:

*I know you feel like the bottom has fallen out of your life, that the future as you had planned it now seems insignificant, lost. Your normal, everyday life as it was before you received your cancer diagnosis was taken away from you the moment you became a cancer patient. You want your normal life back, even with it's trials and troubles...the life you at least felt you had some control over.

*I know you are terrified and angry and fearing the worst...thinking of all you stand to lose, thinking of all of the people who will be hurt by your diagnosis, thinking of the fear and pain this will cause your husband and children. I know you are terrified of abandoning your husband and children.

*I know your thoughts are not positive, and that you fear that the fact that your thoughts are not positive will condemn you (they won't).

*I know that the word cancer, to you, means a likely death sentence, as it was for your own parents. You fear causing in your own children the sense of loss you felt when your parents succumbed to this disease.

But I think of these things I have learned through my own journey that I need to also tell her:

*Your mother and father were diagnosed with cancer decades ago...so much has changed since then. In some cases cancer can be cured now, in others it can be a chronic disease for decades and not a death sentence. We live in an era where there are new and amazing advances being made against this disease every day. My own involvement in the Scientist-Survivor Program has given me a new hope for those of us fighting this disease.

*Many people, like myself, who were once considered beyond hope and help, survive many years cancer free. There is no one cancer that has killed ALL of it's victims. There are survivors of every type and stage of cancer. There's no reason why you can't be one of the survivors

And then the more practical things....

*Become educated and knowledgeable about your cancer, bring a written list of questions to your appointments, expect answers to your questions. If you don't feel your questions or intelligence are respected, get a new doctor who will work with you as part of your team and value your concerns.

*Chemo isn't as bad as it's reputation...nowadays they medicate and premedicate you to prevent many of the side effects that used to give chemo such a bad reputation (I was on chemo for 7 months and was nauseated only once, never threw up, GAINED weight and enjoyed eating (and athletic training)while on chemo. My Tuesday "Chemo Group" was fun, we laughed a lot and had a kind of "gallows humor" only cancer patients can enjoy. I drove myself to and from chemo and went grocery shopping on the way home from chemo. My life on chemo was pretty normal.

*Not everyone loses their hair to chemo, but if you are expected to lose your hair to chemo, make sure to get a prescription for a "hair prosthesis" (so your insurance will pay for a wig if you need one). See a stylist to help you find a wig that matches you current hair color, texture and style BEFORE you lose your hair..which will likely be after the first few treatments. And when your real hair grows back it may be different..a different color, a different texture, and maybe even naturally curly (or straight if it used to be naturally curly). Also, if you lose your hair, you lose ALL of your hair, not just the hair on your head.

*Don't suffer any chemo side effects you may have as "expected"...most of them can be treated so that you can live a pretty normal life while on chemo. Don't assume nausea and vomiting and feeling terrible are normal chemo side effects. I communicate with a woman who has advanced cancer that is surgically untreatable and who is on chemo who is still running marathons and working full time.

*Being in the cancer community can be a blessing...you meet very "real" people who share a lot with you and your new cancer values and perspectives and who inspire you. It's a great growth opportunity. You get the great feeling of belonging to an almost sacred society.

*If you can't sleep after chemo, maybe steroids are causing you insomnia, see if they can tweak the steroids or give you a sleeping pill for chemo days

*Seek peace of mind and emotional well-being through whatever and all channels work for you...support groups, counseling, antidepressants, a cancer survivor buddy, art, music, poetry...do whatever you need to do to keep your sanity and protect your mental health..your mental health is every bit as traumatized by a cancer diagnosis as your body and deserves equal treatment. We are our mind and our body and our soul and our spirit...to only treat your body and to disregard all of the other parts of our being is wrong.

*Find a way and allow yourself to express the anger that you are justified in feeling. Watch the movie Griffin & Phoenix if you need examples of justified anger and the need to release it.

*Be careful with over-the-counter healthful supplements...some can interfere with the effectiveness of chemo...everything "herbal" and "natural" may not be not good for you.

*Set limits if you are overwhelmed with too many well-meaning people...sometimes well meaning people can say and do the really wrong things...just let that roll off your back and avoid them next time if you can

*Nurture your spiritual side in whatever way is most helpful...writing, singing, praying, making music, yoga, Tai Chi, meditating, hanging out with people who inspire you

*Treat yourself to something special...a weekend or week away all by yourself or with a friend to help you regroup.

*Let yourself feel whatever you need to feel while going through the process. There are no wrong feelings, only honest feelings

*Don't expect your life to eventually get back to your "old normal" life...it won't, and that's okay...sometimes the "new" after cancer normal is richer and more meaningful...and less full of insignificant things you find don't matter after all

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