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Online Grief Support, Help for Coping with Loss | Beyond Indigo Forums
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    • ModKonnie

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      Hi all,  I'm sure you've noticed some changes in the forums. We've again had to do some updates, so that's why things may look a little different. Nothing major should have changed.  Also, we are going to start adding advertisements sensitive to our community on the boards. This is something we are experimenting with, and we will certainly make sure they are in the best interests of everyone. We want to make sure our forums continue to stay accessible and cost free to all of our members, and this is a way to ensure this.  If you have any questions or comments, please feel free to privately message me or email me at Konnie@beyondindigo.com.  As always, we will be here with you, ModKonnie
Alligator carrie

Stage 4 esophageal cancer/ healthcare system failure

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The healthcare system has failed my mom. In 2013 she was found to have a lymphnode in her neck that had metastasized from an unknown site. Her pathology was sent all over the US where they eventually labeled her as having lymphoma.  This was a misdiagnosis. They treated her with surgery, chemo, and radaiation. A year and a half later she was diagnosed with breast cancer. She underwent a lumpectomy and radiation. She has trouble swallowing and went to several doctors who told her it was from the first radiation causing scar tissue. She also noticed one of her nostrils was closing up and she had difficulty breathing through it, again this was dismissed. She went to ER due to a severe headache and vomiting where she was found to have a brain tumor. She underwent a craniotomy where the pathology was the same as the first cancer, a metastasis of an unknown origin. Further work up revealed esophageal cancer, no wonder she couldn't swallow. It had spread to her colon, lungs, liver, spleen, bones, and nose (the reason she was having difficulty breathing)She has undergone radiation to the nose, esophagus, and brain and currently going through chemo where her cancer is continuing to grow. During this time the insurance continually denied her treatments and follow up appointments, doctors were waiting far too long between scans and visits, and no one has told her how bad her prognosis is/life expectancy.  She was in good health and lived a healthy life style, only 64, Active, vegan, exercised, applied sun screen daily, didn't smoke, didn't drink.  I estimate she only has a couple months left and I'm having a hard time coping. How will I get through this? She will never see me get married or have children. I don't have religion to fall back on. Seeing my dad so upset over this is also termultuous. He has seen her everyday for the last 48 years. He is clearly not in good health either and I think he will pass shortly after she does. I will have no parents. I feel useless. I feel like the healthcare system failed us. How do people get through this? I'm so upset my heart literally hurts. How did this happen. 

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For now, you get through each day by spending as much time with your mom as possible. You help her, you listen to her stories, you give her comfort. You spend time with your father. You help him. Tell your parents you love them. Tell them often. 

You also take good care of yourself. You eat right. You get rest. And find a support group. Look for a hospice center to help you: 

http://www.nhpco.org/about/hospice-care

It is tough, but you just concentrate on a little at a time. Each day, just a little at a time.

When she passes, you get through a little at a time just breathing. You cry, you rant, you vent, you talk, but you will get through. 

We will be here with you,

ModKonnie

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There are many ways to cope up with the issues associated with cancer treatment. Why don't you connect with some professional support or a therapist? I recently came across an article- http://www.cbtassociates.com/blog/coping-with-cancer/coping-with-cancer/  which explains the treatment approaches for coping with cancer. They can guide you in the right way. I believe it will be helpful in your case. May we all have doctors who can help us with the issues that we are facing as well as prescribe the required treatments.

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