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News about our Djinnie

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hello dear friends,

I have been communicating with Djinnie since she "signed off". Unfortunately, she is going downhill very fast. My heart is breaking for all that she has endured. She is in a lot of pain, the morphine isn't doing much at all. I am hoping they advocated for different meds for her. She has asked me to let you know....the following is a quote from Djinnie:

"Sadly I have taken several turns for the worst, in fact I am struggling to write. I am very likely to end up in hospital because the pain is excruciating, I find it difficult,  I can't eat any more and bodily functions are shutting down. I would appreciate you telling the others as I don't have the energy.  I will try and stay in touch with you,you are a good friend."

I know that everyone here has a special place in their heart for that special lady. Our thoughts and prayers will all be going out to her and her family. I hope she doesn't have to endure much more pain. This is a horrific disease.

If I hear any more, I will definitely let you know.

Much love and hugs,

Jojo

 

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

I'm at loss of words...

thank you for letting us know

APny's picture
APny
Posts: 1987
Joined: Mar 2014

My heart is breaking as well. This is just awful. She's a very special lady and I can't stand the thought of her suffering like this. I hate this %$#@ disease!

RMolinaro414's picture
RMolinaro414
Posts: 43
Joined: Sep 2014

This is heartbreaking. I haven't been heavily involved with her story, but I read a ton of her post. I am praying they can find some relief for her pain. My heart goes out to her

Srashedb
Posts: 482
Joined: Dec 2013

JoJo:

thank you for posting this; I too had been communicating privately with her but had not for a couple of weeks and was concerned about bothering her.

She is a very special lady and it hurts to learn that she is having so much pain.

if you hear anything more, please let her know that she is in my thoughts.

i dread signing on and seeing a post with her name just as much as I had been delighted to hear from her before this latest turn.

Thank you, JoJo 

Sarah

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

OH dear, how sweet of HER to think of US! Thank you so much, JoJo, for relaying her message to us.

I wonder if she is truly in hospice care. Hospice RNs are trained in knowing how to administer pain meds, in levels most MDs RNs cannot for home and hospital care. Hospice even knows how to read a patient's level of comfort when they can no longer tell you. Even I learned how to tell our RNs a patient was in distress when the Hospital medical team thought they were "fine."

A good hospice  eventually provides IV Pain med PUMP that computerizes the amount used and times patient or family pushes the boulus (button) for extra relief. That way you get continuous pan adminitstered and doses/amounts adjusted continually when needed. Morhine helps also to keep the airways open at that latter stage of dying. Weird because opiates suppress respiration when not dying.

Some  hospices do not provide this IV pump inside the home, but the one I worked for did. So, if you are in more pain, inspite of the pump, the Hospice RNs would come out to re-calulate on a DAILY basis,  if not hourly, so you'd never have to suffer. Of course if you are lucky enough to get into a residential hospice, they staff is right there.

Again, you need an MD to order Hospice care for a patient, even if in a hospital or residential setting.

The Hospice I worked for required daily RN home visits, once a IV pump was placed. The RNs were available 24/7 even during the night just to make sure the patient is not suffering. They also offer emotional support for the family with help and instructions and assisitance.

This is why we need to advocate for Death with Dignity laws here in USA (DJinnie is in France). That way she could decide when she feels enough is enough, and wishes to go peacefully without suffering. Again, this would be HER decision.

My heart is so heavy, no one should suffer like she has..is..

I continue to send my spirit of love, forgiveness,

and hope that she will have the peace she so well deserves..

Soon.. DJinnie soon..

Even though many miles separate us..

we are connected..

Heart to heart...

Spirit.. to spirit..

Love with lovely love...

May you know how much I love you!!

Thanks again, JoJo..

Hugs to us all!!!

Jan

 

a_oaklee
Posts: 523
Joined: Nov 2013

Thankyou jojo.  Please tell djinnie we are with her in spirit.  My heart aches.

Annie

angelsnls
Posts: 67
Joined: Nov 2014

So sad reading this she is a very special lady, please send her all my love, this is a horrible desease,

Sending prayers, love, hugs and kisses.

Angela xx

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

So, so sad but thank you or for keeping us posted. I hope she doesn't have to endure much more. Sometimes life is just not SO good- BDS

 

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Sad news...Hope they can keep her painfree, at least...

DSFrey
Posts: 69
Joined: Jan 2014

Thank you JoJo. Wish I could return the comforting words and advice she shared with me when I needed it. Thank you Djinnie!!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

We are all thinking of you and wishing you the best in our own ways. Should you look in know that we hold you in our hearts. 

Thank you Jojo, for keeping us informed

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Thanks Jojo. DJ, I am pulling real hard for you. We will see you again.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Djinnie, I am hoping for the best for you.  Keep fighting, and don't give up. 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Thankyou Jojo. It is good to know how she is doing even though it is not good news. She is a dear, sweet lady and I will be praying for her and her family.

Hugs to you too! Melissa xox

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Djinnie,

You are so very loved and appreciated for how you give of yourself, always.

I'm sending prayers, hugs and wishes for peace of mind, body and soul to you.

Arleen

Jojo - You're a pretty special lady too!

myoung790
Posts: 75
Joined: Sep 2014

Thank you for the update.  I too hope she can find some comfort.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Appreciate your post. I'm really sad to hear she's struggling with so much pain. I hope they can get it under control.

Djinnie, we're pulling for you.

Wishing you the best.

Hugs,

Todd

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

I, too, have been in contact with Djinnie and last heard from her a few days ago. It appears her health has certainly regressed since her last message to me. As always she was wishing me the best and being the wonderful person she is. It is at times like this I find it very difficult to know what to say. 

Sue

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Sue!

 

We haven't seen you much around here these days. How are you doing?

ConnieSW
Posts: 1497
Joined: Jun 2012

Thank you for updating us.  I know you will make her aware of how much everyone cares.  I am so angry they aren't managing her pain.

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

I know it's been a while since I posted. I have been going through my own issues and to be honest I didn't feel up to contibuting anything. I have several new things happening - new brain and bone mets. Latest brain MRI showed no growth in the one lesion in 2 months which is good and radiation oncologist is not in a hurry to radiate but he will be meeting with his team on Monday to discuss. He wonders whether Sutent may be having an effect although is fully aware of the blood/brain barrier. I have been on Sutent since early January and have had few side effects for which I am thankful. I haven't reached full dosage of 50mg, presently 37.5mg 2 weeks on, 1 off. I feel that this drug might actually be doing something postive. The one tumour that is obvious has has had a significant reduction in size. I will also be seeing medical oncologist on Monday for review. I assume it is almost time for a CT. Happily, I still feel pretty well and outwardly show no signs of the dreaded disease

i have been reading posts and note you and several others are due for CTs soon. Good wishes to all.

Sue

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Sue, I don't know you very well, nor you know me, but wanted to extend my empathy for your recent struggles. What a battle! Just wanted you to know I care and hope you receive continued improvements ..reaching wellness. Glad you have few to no side effects too..whew~

I can imagine if she could, DJinnie would reach out to YOU with her care and support~

Be well,

Warmly, Jan

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Just wanted to say hi Sue. And glad to have your post and your update.

Wishing you the best.

Todd

Yeric
Posts: 65
Joined: May 2015

What are we going to do today Brain?  Same thing we do everyday Sutent!  Take over the world!

Sorry about that.  I seem to have developed a dark side to my humor.

One of my issues with RCC was a tumor on my pituitary gland.  After radiation and the appropriate waiting period.  The original tumor was declared gone. 

However there was just a glimmer on the pituitary stalk itself.  And that was declared not important.  I went on Sutent shortly after that.

Remained on sutent for three and a half years.  The glimmer remained so the whole time. 

Except for the side effects I loved Sutent for the controll it had over the RCC in other places.  However I was moved to votrient.

Along with a new Doctor closer to home.  Long story. I was without treatment for nine months.  I needed the rest to be frank.  Most everybody was on their best behavior. 

Then the glimmer went from just that to 3.5 cm. 

So yes.  Sutent can and does get by the blood brain barrier.   I used to have a printed copy of an ASCO abstract that studied that in a positive way.

Wandered off somewhere.  I will probaby find it next to my youth and good looks. 

I hope I have helped in some way.

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

No one deserves to go through this cancer is a horrible disease i just hope  Djinnie is able to be comfortable.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I had been keeping up with her also but Ihave not heard anything for a few days and was wondering about her.  Bless her heart, hope they can control her pain.  Sure do love her.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Thanks for the update, JoJo.  DJ is one of a kind! So warm and loving and thoughtful! Even while going through her own issues, she writes to ask how my mom is. I am praying that things turn around for her.  It is too quiet around here without her posts! Praying for you DJ...Sending you love and big hugs! Know that we are all pulling for you!  Sue, it has been so long since I have seen you around, wondering how you are.  Thanks for the update, I am glad to see that you are doing great with Sutent. Wishing you the best and sending hugs all the way around to everyone!  XXOO

FLOSSER
Posts: 17
Joined: Jul 2012

Thank you for letting us know about Djinnie. I am still checking in on everyone. May the angels surround her and take away her pain. SUZ

 

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I have been so busy and unable to post, however, I do read the board daily.  My prayers go out to Djinnie and my hope for her is resolution for pain and peace.  Thank you for always updating us, Jojo.

 

Debbie

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Debbie, Jojo has a new thread updating us with good news. Read that especially her post from the 24th in that thread.

http://csn.cancer.org/node/293854

 

 

Bonzy's picture
Bonzy
Posts: 17
Joined: Mar 2015

Iam new to this site and don't know any of you ,but I read a lot of the post . I'm so sorry to be reading about Djinnie . My thoughts and prayers go out to her and her family

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