How we coped with cancer
Mom's favorite birds
"Your Mother has Cancer"
The doctor said the words and my heart seemed to skip a beat. My sister, sitting beside me, was pale. Probably as pale as I was. What’s more, my mother had the most aggressive form of cancer-Sarcoma, which meant despite surgery and treatments she would eventually die from this cancer because it can metastasis so quickly. The doctor said they could prolong the inevitable with treatment, but at what price. Chemo would make her so sick that living would be atrocious at best and radiation would cause sores on her skin and also make her somewhat sick.
While we tried to make sense of it and begin to accept it, the doctor then told us that immediate surgery was the first step. Not a small incision but radical surgery with several days of painful recovery time. Already the horror had begun.
Of course no one wants to believe that they or a family member has cancer. A second opinion is usually desired. That announcement, however, was our third opinion, and they had all been the same. Strangely, my mother took the news quite calmly. She didn't get over dramatic (which is her usual way to deal with even the smallest thing). She didn't cry. She didn't even ask what was the next step. What did my mother say when she was told? "NO CHEMO!"
We told her that perhaps she would want to discuss the options with the doctor. Possible treatments other than chemo and radiation. We suggested that she should listen to what the doctor could tell her. She repeated "NO CHEMO!" Then sat back on the chair and crossed her arms meaning "Don't try to tell me anything! I know what I am talking about. End of discussion. This was just like her.
What we wanted VS what she wanted
At first we (her children, grand-children etc.) insisted that my mother get all the treatments that were available to her. Chemo, Radiation, the works. I mean we didn't want her to just fade away like we heard others had done.
My mother, stubborn to the last, felt she wanted to have at least a little dignity before she died. She agreed to the surgery, and the radiation, if for a short time. But she absolutely refused chemo and all the tests that accompany cancer to follow its progress. We were angry with her and frustrated that she would not agree to the tests and treatments. How could she be so selfish? Then we talked among ourselves and realized that she wasn’t being selfish, we were. It was her life, her body, and her quality of life that we were trying to control. We finally listened to her and gave her as much support as we could without trying to force our choices on to her.
We had a few tricks up our sleeves, or so we thought.
We managed to get my mother to do 'most' of the tests. After all, she could be stubborn sometimes and we were trying to be understanding. But for over a year the news was good. They said she was in remission. So, we did our best to be sure she spent her time doing things she loved. We made the holidays huge for her and took her out as often as we could.
Towards the end of the first year, however, she began to groan about how she was going to die so what did it matter. She began refusing to go with us and cancelled many of her doctor’s appointments claiming to be too sick or in acute pain. She refused to even see her PCP claiming that she was dying and he didn’t need to tell her that. We were baffled about what to do. If we tried to force her to go, she might become even more stubborn about it, but if we ignored it and waited until she was ready, it might be too late.
We held another family meeting with her present and discussed the issues and what we were worried about. We told her we loved her and wanted her to be happy, but that we couldn’t help her if she wouldn’t help herself. She agreed to a CT scan but nothing more. The CT scan showed nothing developing and we gained hope once more. My mother, on the other hand, lost all hope and fell into a deeper depression, telling everyone that she was dying and wouldn’t be around much longer.
A year had gone by and all the tests were negative, so we didn't understand her reasoning. It was, however, her being her instead of just sitting back calm, cool, and collected. We didn't want to force her to do things, but we did need to get her out to enjoy life now while she had the chance. But she wouldn’t listen. She fell deeper and deeper into the depression trap and finally refused to even move out of her room. We had social workers talk to her. Counselors and priests did their best, but she was adamant that she was dying and what did it matter. She even began giving her things away, the ones that had meant so much to her that they were displayed in her room.
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Nearly two years later,on one of her better days, we convinced my mother to go see her oncologist and discuss the situation with her. We knew it would be only a matter of time before her cancer came back. Her oncologist found her lymph nodes around her neck were swollen and the biopsy told the whole nightmare. Mom’s cancer was back. We were, to say the least, angry, frustrated, feeling helpless and afraid. All that time with no sign and now it was back. This time the doctor said no surgery, Mom had a few more months at best.
She could start treatment again, the doctor said, but it would only prolong her life a bit more. There was no way to stop it. Not this time. This time, being in her lymph nodes, it meant it was pretty much everywhere. Why hadn't she gone to her appointments? Why hadn't she gone for the usual tests? Why, why, why--but this was her life, not ours! It was hard to remember that.
We feared the worst and with good reason. Soon my mother was in the hospital hospice room. The doctors gave her only a few days more. During the week that we waited, feeling like ghouls instead of her family, we gathered in a tight family group. Not only her children, but spouses, grand-children, nieces, nephews, cousins, aunts and uncles. We took turns speaking to my mother about how we felt. We talked of good times and bad. We talked of our favorite memories and holidays that we had shared. We talked of others from our family who had already died and would be waiting for my mother. And we cried. It was hard to watch her waste away like that. She looked like she was sleeping, but we knew better. Our emotions were running in repeated circles, anger, fear, joy (no more suffering for her), hope every time she took another breath. As a family, we stuck together and helped each other through it. After all, it was her life, not ours. But it was so sad to see her fading away
I wrote a poem that I read at my mother’s funeral. Perhaps it could help you, or a loved one, cope as we did.
They tell us all that grief is hard but time will make it part.
They tell us remembering the good times will keep loved ones in our heart.
They tell us death is only change and that they have a better life.
They tell us now they’re free of cares with no worries, woes or strife.
What they don’t say is that grief can bring a whirlwind of feelings
that make us cry or smile or pout as our emotions send us reeling.
I’d like to think they go to meet all those who left before them.
But my mind keeps running back to see the times that I spent with them.
The grief, you see, is not that they’ve gone, but that we were left behind
to remember, and cry, and hurt, and scream “Why did it have to be mine?”
As I close this hub, I wish to send everyone a heart-felt wish. May you never have to go through what we went through. But if you do, may you be blessed with your family at your side.
© 2011 Cheryl Simonds
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