Comments on: Why the Treatment for Brain Tumor is Difficult for both the Patients and Their Families?

By: Lee Hayes

Lee Hayes — Mon, 05 Oct 2009 18:14:14 +0000

Amanda, I’m sorry to hear about your younger sister and it seems like it always hits the wrong people. What I would have done differently would have been more patient with my wife. I would have questioned the regiment of Dr’s treating her more and did research to understand tumors and how to support her more. During the last year of my wifes life, she was admitted to the hospital on nine different occassions. One OR nurse was kind enough to tell me that if I would call 911 the ambulance would pick her up and bring her right into the hospital. What a God-send that nurse was to me because at that time my wife was wheelchair bound and as sick as she could be.Thank God for Hospice. They were angels in disguise. Since I was all alone with my wife, they went out of their way to help me. The volunteer that came to my home to help me was just great.I don’t think I could have got through those last months without their help. There also are support groups out there and Hospice was gracious enough to send volunteers to stay with my wife while I attended a few meetings. If I can be of any assistance to you, please don’t hesitate to drop me a line.

By: Nicole

Nicole — Sun, 04 Oct 2009 21:39:45 +0000

My 9 year old daughter passed away 2 weeks ago. She had been batteling a malignant AT/RT brain tumor. These tumors are very aggressive. The location was above the pituitary and connected to the hypothalamus. They couldn’t remove all of it. 6 weeks chemo.radiation shrunk it, but then it slowly grew back and spread. She fought so hard for 9 more months, but once the tumor grew and spread all we could do is be there by her side. It was so sad to watch my daughter deteiorate in front of my eyes. These tumors are awful and all we can do is raise more awareness. If your child has a headache, make sure to keep track of them and never hesitate toget a cat scan done. My daughter woke up the morning af September 22nd 2008 and had a pounding headache, light sensitivity, and vomitting…….five hours later we find out she has a mass in her brain. She never had any other symptoms before this day. No parent wants to ever hear those words.

By: amanda

amanda — Sun, 04 Oct 2009 16:14:25 +0000

Lee:

I don’t want to be insensitive or invade your privacy. But my younger sister was diagnosed last December with a malignant brain tumor. Would you share with me what you would have done differently and why? I feel the same guilt as you: Why am I not reading more, learning more, taking a more assertive position in her treatment? Because there isn’t enough time, energy, money, etc. If there are lessons and insights you can share, I’d be so grateful!

By: Wendy

Wendy — Sun, 04 Oct 2009 15:04:59 +0000

*recovery

By: Wendy

Wendy — Sun, 04 Oct 2009 15:04:28 +0000

I had brain surgery through my nose. Transphenoidal. It was great. No marks and easy reovery.

By: Wendy

Wendy — Sun, 04 Oct 2009 15:02:12 +0000

I had a brain tumor and had brain surgery in 1995. Please, I would like to point out to all the relatives and caregivers, you did your best. I was so ill for so long and the surgery was the only thing to help me. The Parlodel mad me so ill that I coulkdn’t go on taking it to keep the tumor small. I would have rather died than suffer that medication. I actually stopped taking it for a year, knowing the risks.
My own mother didn’t help me deal with the suffering or the loss of my job or the expenses or even let me rest at her home when I visited. It was an awful time for me.
Your loved ones were blessed to have you. My husband walked out on me, my job fired me “Due to your brain tumor”. Of course, when I sued the company and won, everyone wanted to be my friend!

I now have a wonderful life. Please, if anyone needs help finding a doctor, my brain surgeon was the BEST! Dr.Hae Dong Jho. He now has his own brain center.
God bless all of you.

Wendy

By: Gretchen

Gretchen — Sun, 04 Oct 2009 14:32:43 +0000

My husband of 24 years had a pituitary tumor remove December 6, 2008. Since then, his attitude, and character has changed, and for the worse. We are trying to deal with it but we are constantly having discussion about divorce. I am so tired of putting up with his abusive (verbal & emotional)attitude. I honestly just want out. So, when they say that you need to give time for these kinds of things, some people have NEVER had to really deal with it! I do love the man I married, but who I was left with, is not him.

By: jeanne weaver

jeanne weaver — Sun, 04 Oct 2009 13:27:58 +0000

It gets better than that Lauren. More then 50% of people in the US are uninsured and of those that are insured, many are on some form of public assistance. I needed surgery and had a doctor tell me that he wasnt in the charity business. That comment was due to an insurance company that took too long to pay.

By: Lee Hayes

Lee Hayes — Sun, 04 Oct 2009 12:56:15 +0000

Lauren is so right. Eight years ago my wife was diagnosed with a malignant brain tumor and it was devastating for both of us. We were both so scared because we didn’t know what to expect. During this harrowing experience I tried to be her caregiver and did everything I thought was right. Six years after her death I keep questioning myself because why didn’t I know about this or that. I only wish I would have known more and maybe the last couple years of her life would have been easier for her.

By: Lauren

Lauren — Sun, 04 Oct 2009 10:12:13 +0000

An important point that is not addressed in this article: Ultimately what it all boils down to is the type of insurance you have. Tahn you really have fewer choices and less decision making power. And after the death of the brain tumor victim, the survivors have a lot more guilt and regret because there was not enough time to figure things out.