Topic: Newest Member

Hello wonderful people of cc.org

I have been following this site for almost a year and a half since my grandmother, Nana, was diagnosed.  My mom is summergirl and I know she has found this site very helpful.  For all of you who have offered her information and support I thank you.

I find myself turning to this site as I live in Los Angeles, Nana is in Baton Rouge, and I just need someone to talk to who knows about this monster.  I have traveled back home once month every month since October.  Twice in the last three weeks.  I am struggling with the guilt of not being there full time and the exhaustion of flying, crying, screaming, pacing, and all that jazz.  We are a very small family and I am the only one missing.  I fear that I won't be there when she passes and I fear that she'll keep holding on until I'm there again. 

My Nana has been up and down and sideways and this nightmare just keeps spiraling.  One day we think it's the last and then the next day she wakes up, eats and drinks.  Everyday is the same and every day is different.  Friday she thought she had died, Saturday she was practically comatose with no eating or drinking and then yesterday she woke up and wanted King cake and Dr. Pepper.  This uncertainty is unsettling for us all.

Anyway.  Thoughts on how all this goes?  I mean in three weeks she has practically died twice, thought she had been cremated, realized she wasn't, eaten and not eaten, could suck through a straw and not suck through a straw, etc. etc. etc.

Thanks for reading.  I'm so sorry for the fact that you understand.

Re: Newest Member

Welcome daughter of summergirl and Grandaughter of a wonderful Nana. Everything you feel is sadly normal for what you are all going through. You are doing the best you can and Nana knows this! Never feel guilty for things beyond your control. It sounds like Nana is having a lot of agitation and this can be controlled through proper meds. I am curious if she is in Hospice or not. Hospice would do so much to see to it that she is more peaceful and comfortable. IF the Doctors and family feel she is nearing the end of her journey it would be the kindest thing for all to make this part, as I said, more peaceful. I believe that she knows what is happening and will pick her own time. In the meantime it is very important to let her know it's all OK and that she is loved and that you will all be fine. I believe we reach a point where we have to give permission and this also helps to release us as well. If you are not really at this point, best wishes but if you are here I hope this helps. Prayers floating your way!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Newest Member

Hi Lainy,

I've probably read every post you've ever done so I'm very glad to hear from you, and welcome back. 

Yes Nana has Hospice.  She also has aides/sitters 24 hours a day.  She has been on and off Oxycodone, Oxycontin and oxygen.  She is on Lorazapan three times a day to help her agitation and ever worrying mind.  All seven of us, eight being Nana, have told her how much we love her, that we'll take care of each other, that she doesn't have to worry, that we will miss her but we will all be ok.  She has been the matriarch of our little family and a bit of a control freak at times.  The hardest part for her in all of this is that she "can't do what she use to."  In fact even bedridden she has told people that she's being lazy.  Really, nowadays, she can hardly speak so she doesn't say that so much anymore.  Lainy I don't even think she's dying of cancer at this point.  She's not showing any signs of jaundice, no bloating and no real pain besides her back (she has severe scoliosis and osteoporosis).  I don't know.  Thanks again for writing back.  You'll probably have to get use to my ramblings.

Re: Newest Member

Ramble away! I feel so much better now about Nana. Like I said she will pick her own time and in the meantime the key words are comfort and family. I know it is hard to take but she is still in control and I am sure she is very happy about that. Teddy called Hospice our Honemoon time. And it was. It is comforting to look back and know I would not have changed a thing. You are so lucky to have an honest to goodness Nana! By the time I was 3 I had lost all Grandparents. I totally relish my part now as a Grandma....nothing like it in the world. Ramble all you want, that is what we are here for!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Newest Member

Zanderini....As far as I recall, your Nana underwent Sir-Sphere not too long ago therefore, some of her extreme weakness may also be related to that particular treatment and the additional potent drugs may very well add to your Nana's confused state of mind.  Either way, I would discuss this with the Hospice physician. Possibly some medication could be reduced.  Just a thought.
Hugs are heading your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

6 (edited by jathy1125 Tue, 12 Feb 2013 12:17:45)

Re: Newest Member

Zanderini-What an amazing grandaughter Nana has, it just shows what an amazing women she is. I was also  the long distant child, I took many costly last minute flights, driving in the middle of night..., the last few years of my moms life. I was very lucky I was there when she passed away unexpectly. My daughter was in school and always struggled with not knowing when she should come, but the one thing we did is when my mom slipped into a coma, we let her talk to her and say her goodbyes by cell phone. We did this with all her cousins and Cates (my daughter) was the last to talk to her and she passed with in moments of finishing her conversation to her.
Don't worry about your physical presence, your heart is always with her and you won't remember  her last moments but all her other moments in your life.
Lots of prayers-Cathy

Re: Newest Member

Hi Zanderini,

I wanted to welcome you and tell you that you are such a special granddaughter. Your Nana knows you love her even when you can't be there. Don't beat yourself up about that. Does anyone have a computer or laptop you could Skype with your Nana on? Just a thought. My thoughts are with you.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Newest Member

Hi Zanderini,

I just wanted to say that don't feel bad because you can't be there all the time. You are a good granddaughter and your grandmother will know that.  I live 300 miles from my family as much as I want to be with my sister nursing her and supporting my parents, I have to be realistic.   You do what you can, when you can and utilise all the support you have.

I travelled back yesterday after 4 days with my family and it was very hard leaving them but as someone told me yesterday, if I fall, I can't pick them up.  You have to look after yourself too which is easier said than done.  Please keep coming back to the forum as there is so much support.

Clare

In the stars now . . . .

Re: Newest Member

Hi Zanderini,

Just wanted to say hello and welcome you to the site.

It is so hard to be far away from those we love when they are sick.  But you sound like you are such a wonderful granddaughter and do what you can.  Try not to beat yourself up too much.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newest Member

Hi everyone,

I'm sorry I took off for a minute but things got hectic.  My Nana, summergirl's mom, passed away on Valentine's Day.  Oh my, I thought I could write more but I think I'll come back another day.  I just wanted to let everyone know and thank you all again for all the support my mom and I got.

From the bottom of my heart,

Amber
(Nana's "Angel girl baby")

Re: Newest Member

Dearest Amber, I am so, so sorry to read about Nana. How beautiful though that  your heart of hearts found Peace on the most loving day of the year! What a wonderful family and legacy she brought to this world.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Newest Member

Dear Amber,

I am sorry for the loss of your dear Nana. May she rest in eternal peace. I'm sure she was and still is so proud to have such a wonderful, caring granddaughter. Please tell your Mom that I am sorry as well.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Newest Member

Dear Amber,

I am so very sorry indeed to hear of the passing of your dear Nana. Please accept my sincere condolences. I can so understand you not feeling like writing more just now. Please know that should you feel like coming back at some point then we will all be here for you. We know how you feel right now and my thoughts are with you and your mum.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Newest Member

Dearest Amber,

I was so very sorry to hear about your Nana.  She must have been so proud of you.  May your memories of her sustain you and your mother.

Come back and see us when you are ready.  We are always here for you.

Thinking of you.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.