Looking for help facing end stage cancer

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lprof
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Looking for help facing end stage cancer

Post by lprof »

A friend is hoping for some suggestions from your personal or medical experience in facing the end stages of brain cancer, specifically Grade 3 Aniplastic Astrocytoma.
The patient is 34 with two girls in their early teens. She has had multiple rounds of chemo, radiation, and surgery and is losing some ability as well as becoming very depressed.
How can family and friends help her and her immediate family? What may be expected to be happening over the next weeks and hopefully months?

I am willing to pass on any advice or comments via messages. Thanks for any help.
Last edited by lprof on Wed May 21, 2014 11:43 am, edited 1 time in total.
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Sunflower
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Re: Looking for help facing end stage cancer

Post by Sunflower »

Dear Iprof - I am not a medical professional, but would first like to offer my sympathy to you and your friend. How sad for such a young person to face this diagnosis.

Has she gotten a second opinion? I worked at Duke University Medical Center for 27 years, and can tell you that the Preston Robert Tisch Brain Tumor Center there is absolutely unparralled in treatment of brain cancer - specifically, Dr. Henry Friedman and his team. If at all possible, I would suggest she try and see Dr. Friedman. http://www.cancer.duke.edu/btc

Another suggestion from my personal experience is to engage Hospice Care as soon as possible. I lost my twin sister just over a year ago to metastatic lung cancer. Once she decided to stop treatment, hospice was absolutely wonderful. I was her caregiver for 7 months, and hospice was there for us every day - nurse visits daily, medications delivered to the door, daily help with her personal hygiene, and tremendous support in every way.

I hope my suggestions may offer some support...
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lprof
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Re: Looking for help facing end stage cancer

Post by lprof »

Sunflower, thank you so much for offering your ideas. All the treatments have been at Duke and she is at the point where her doctors have said there is nothing else they can do. I am hoping that she can begin Hospice Care soon.

I am sorry for the loss of your sister. I feel sure that your care made her difficult days better and easier. I recently lost a good friend who battled Multiple Myeloma with treatments at Duke and then the Levine Cancer Center in Charlotte. Too many wonderful souls are lost to cancer.

Thank you again for your time and sharing your thoughts.
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equineannie
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Re: Looking for help facing end stage cancer

Post by equineannie »

So sorry and God bless the family. Hospice is the best place to go, they have seen it all and can share their expertise.
PA Girl
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Re: Looking for help facing end stage cancer

Post by PA Girl »

Hospice care will also include a social worker to help with family issues as it relates to supporting the children and preparing them as well as the patient.
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mahojim
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Re: Looking for help facing end stage cancer

Post by mahojim »

I started my own self-absorbed thread about quitting smoking before I read yours, and I'm so sorry to hear about the challenges that will be faced in you and yours immediate future.
I wish I had the right words.
Stay positive for all involved. You may seem last on that list, but the backbone you can supply just might emotionally support more than you think.
My heart is with you.
Jimmy
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Florida Girl
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Re: Looking for help facing end stage cancer

Post by Florida Girl »

I lost a very good friend at the end of February due to lymphoma that was mainly in her brain. She seemed to be responding very well to treatment, then suddenly went downhill. Seeing as she was not close to me geographically, I don't know all that her family went through, but she went into hospice and was very well cared for in her last few days. Sending prayers to your friend and her family, 34 is too young for her to go. I lost another friend to cancer at that age, and before she passed, she framed a bunch of family pictures and hung them in her house so her 3 children wouldn't forget what she looked like as they grew up. Maybe that's something your friend can do also.
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Sunflower
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Re: Looking for help facing end stage cancer

Post by Sunflower »

Lprof - I sent you a pm this morning. Sunflower
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lprof
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Re: Looking for help facing end stage cancer

Post by lprof »

Sunflower wrote:Lprof - I sent you a pm this morning. Sunflower
Thank you! Response soon come!
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lprof
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Re: Looking for help facing end stage cancer

Post by lprof »

Thank you all for taking the time to offer suggestions, well wishes, and relating your experiences. Hospice was on my friend's mind and your comments confirm that she is on the right track.
Certainly documenting a history of time spent with her children is important for their well being now and in the future; for the family to have support in preparing the girls will be invaluable.
I appreciate your help!
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chicagoans
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Re: Looking for help facing end stage cancer

Post by chicagoans »

lprof I realize that I'm a month late on my reply and it may no longer be helpful. My heart goes out to your friend and her family and friends, especially her children.

From my own experience, I hope that they can 'seize the day' as much as possible. We were told that DH had 2-3 months when he started hospice. And we thought it would be longer because he had been such a warrior throughout 3 years of treatment. But it was only 2 weeks, and the last 3-4 days he wasn't thinking clearly so in many ways we had already lost him. We had talked about doing videos for the kids, but had put it off. We had talked about him selling his business, but thought he had more time. The morning he died my kids were at school and I was still trying to give him medicine. Yes I was in denial.

On the plus side, he was at home and in the last few days of his life many, many friends from all phases of life came to visit him. Several were here with me when he passed away.

So if it's not too late, have people visit. Talk to her, even if you think she can't hear. Have the kids talk to her and tell them stories about her and them when they were little. And keep talking about her for the rest of the kids' lives. We talk about DH all the time. I want my kids to know it's good to talk about him.

I can't remember if I posted this in another thread, but I had quilts made from his old tee shirts for the kids and gave them to the kids for Christmas. The shirts have great memories because many were from events that we all did together or teams of theirs that he coached. Very special and I'm sure my kids will keep them always.

Here's a pic from Christmas morning. (DS is giving me the stink eye because he's not a fan of having his picture taken.)

Peace and love to you and your friends.
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Tracy in WI
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Re: Looking for help facing end stage cancer

Post by Tracy in WI »

Chicagoans,

Your response was beautiful and heartfelt. I lost my Mom suddenly ay age 13 and I wish I had an amazing quilt like the ones you had made for your children along with someone to share stories with me about my mom and my own childhood. What wonderful gifts.

Wishing you all the best.
Tracy, Seaside Properties at Grande Bay
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lprof
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Re: Looking for help facing end stage cancer

Post by lprof »

Chicagoans, I apologize for not responding to your candid and encouraging post; somehow I missed it (slipping I must be!).
I have not had a recent update on this young woman; I hope that she is doing better than expected. Another friend lost her husband 24 hours after moving him to Hospice; she was totally unprepared for the time there to be so short. My heart aches for all who go through the cancer experience.
The idea of a quilt for the twins is wonderful; I know that your children treasure theirs.
Thank you so much for adding your thoughts; we can all benefit from your sharing.

Are you coming to 8 Tuff this year? If so... I hope to meet you there! Peace and love.
... no longer a stranger to paradise
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