This is a very important yet very difficult topic for me to write about. I've been putting this off until the right time came around. I am writing about this because I'll always be an educator at heart and my blog is about keeping my loved ones updated on my life and to help anyone that wanders to this blog. This one is about taking care of the co-survivor or caregiver.
A co-survivor can be anyone that is close to you and goes through the cancer experience with you. A caregiver is a lot like the co-survivor. The caregiver is pretty self explanatory; they take care of the cancer patient through treatment, etc. I'll use these term interchangeably though I like the word co-survivor better.
Looking back at my cancer experience, I think I was pretty self sufficient. At times, I think I may have been too self sufficient. I've always been independent. After college, I moved to Tucson, AZ without knowing anyone. I've always believed that I needed to get a degree and not be dependent on a man to take care of me financially. I should have been more specific about what I wanted and needed.
RJ was my co-survivor. This was not a position he needed to take on but he said he would. He did the best he knew how throughout the diagnosis, surgery and chemo. Somewhere along the way we failed to take care of the co-survivor. He did not feel as if he could speak with his friends because they either would not understand or were insensitive. Because of this, he did not vent his fear, anger, concern and issues with many people. With everything I was going through I did not check in on him often enough. I also needed to validate him more. (I've learned a great deal from Dan Shapiro PhD and his session on Couple's Communication. Both Dan and his wife were diagnosed with cancer and at different times. Sadly to say it was after the fact but it helps me help others.) RJ was a ticking time bomb ready to explode...and he did, beyond repair to our relationship of almost six years.
With respect to RJ, I will not delve into great details. I will, however, share what I've learned:
1. www.youngcancerspouses.org is a great online forum for young cancer spouses. It gives helpful tips to deal with the emotional rollar coaster, appointments, loved ones and most importantly the cancer spouses. I met Matt, the founder, at an MD Anderson conference this summer. He lost his young wife to cancer and is now researching cures for cancer at the Texas Medical Center. The online forum is amazing because men typically have a harder time expressing themselves with others. The online forum allows men to have access to other men around the US to post questions and fears.
2. Men really do want to talk. They just need an appropriate forum for it. Through the Pink Ribbon Cowgirls we hosted a caregiver appreciation event and events that were opened to our co-survivor. They may feel "forced" to attend at first but we always got positive feedback at the end of each event. Men need activities or things to do rather than feel as if they were expected to sit around in a circle and pour their hearts out. RJ was always hesitant to attend these events but I had to drag him from away at the end of the night.
3. Don't hesitate to see a therapist or counselor, preferably one that has experience with cancer, couples, and/or major illness. See one before it's too late. Most insurance companies will cover this.
4. Do nice things for yourself as a couple. Take a vacation. Go to the spa together. Try to keep normalcy but remember that life is short so live it up!
5. Communicate, communicate, communicate with each other! Talk about things that are beyond regular day to day things. Have the hard talk about life, death, sexuality, friendship, anger and fear. Validate each other. Establish new roles during treatment. Check in on each other at least once a week. Hold a "business" meeting and schedule one official date night a week. No business allowed during the date night.
6. Communicate with others going through similar experience. Refer back to number 1 and realize that there are other young people going through this too! As for the survivors, there are many, many online forums. The Pink Ribbon Cowgirls are a great one for those in central Texas. Planet Cancer and Young Survivor Coalition are two great forums that are nationwide.
7. Be aware of alcohol or substance abuse. Other problem behaviors may occur too like food, rage, spending, gambling, working too much and affair.
I took a great deal of notes while I was listening to Dan Shapiro.
Relationships are already difficult. Throwing in a cancer diagnosis does not make it any easier. Couples have even more things to deal with. Realize that couples and the co-survivor does not have to go through this alone.
