Saturday, March 17, 2018

From "Cure": "Give Patients Permission to Get Angry"

From "Cure" magazine...

Give Patients Permission to Get Angry

Sometimes going through cancer makes a person want to scream, and sometimes, it should be OK if they do.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.

She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
I have been battling cancer for over eight years now. Eight years of chemo with devastating side effects. Eight years of going monthly and sometimes five days a month into the cancer center, reminding me I am not well. Eight years of roller-coaster ups and downs and in and out of remission. Eight years of waiting for the results of over a dozen bone marrow biopsies.

I am tired. No, I am exhausted. I have willed myself to be positive, as my life changed and my savings dwindled. I was forced to move to a smaller apartment and give up two part-time jobs I loved. I channeled my energies into writing. Simultaneously, I know I am approaching the benchmark of how long I am supposed to survive with this insidious disease. I am increasingly suffering from other infections as my blood counts keep lowering and I feel my body getting weaker.

I do know how lucky I am. I went on Medicare, lowering my astronomical medical bills and alleviating fears of bankruptcy. I have gone on cruises, traveled, written two books, many articles and am constantly going out with friends and family. I have wonderful support groups and a church that means the world to me.

But, I am human! And sometimes I just want to go outside and scream. When I was teaching counseling in graduate school, I taught about Primal Scream Therapy, developed by Arthur Janov in the 1960s. My students didn’t believe there was such a therapy, but there are documented articles on this type of psychotherapy, and some therapists believe it works. The gist is that screaming reduces stress. I am not sure I believe all the jargon, but I do know sometimes I am tired, I am discouraged and I feel sick. Allow me to feel like screaming.

But often my friends and support groups aren’t willing to let me do this. I know it is difficult to know what to say or do when someone is grieving. I have learned to just say to other people, “I am here. What can I do? I am praying.”

The response I occasionally receive when I am the least bit down (like waiting for results of tests) is platitudes. Usually, it comes from people who don’t know me well. Some of the favorites quotes people use is: “Be positive, have faith, God is in control.” I actually find this demeaning.

Believe me, I do know that. I have written a book on devotionals and would not survive without my faith. I have a church that means the world to me. I know positive thoughts help my body to heal, and I am much healthier. I have a doctorate in counseling. But some days I just need to have people let me be upset and vent for a while.

Much to my surprise, I have had cancer survivors who don’t understand this. I have even opened up and said to them I am afraid. They are released by the doctor, cancer-free and just change the subject or walk off – people I have even supported through their ordeal! It feels like they no longer want to be around someone with this disease, because they now are well. This truly hurts and is demoralizing. My philosophy is if you have a hand up, put a hand back to help people behind you. I do understand well-meaning people don’t always know what to say, which is why I am writing this article.

Please, if you know anyone who has cancer, do not lecture or dismiss us. We are not saints – least of all me. Let us cry and scream and be angry. Usually we pick up the pieces after a couple of days, and move on if we are innately positive people.

Oh – and never say get over it – whether it is the death of a loved one, an accident or a diagnosis of a terrible disease. We do not get over it, but we gradually learn to move on. If someone you love is screaming, let them hold your hand, tell them you are there for them, give them permission to be angry and help to pick up the pieces. I have a wonderful minister who has done this for me.

I have met so many courageous cancer warriors and survivors on my journey. They have taught me we can move on, and it just takes time. But I expect them to have bad days, because everyone does. Another day comes when we feel more positive and use our faith to help us. Meanwhile, please just hold our hands.

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