ronidinkes
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Good morning,
I can relate, my mother also was very against chemotherapy. My mother was diagnosed August 2010. She did not have chemo. She did radiation for 4 weeks in March and that knocked her out.
We just got PET results, and the disease has ventured to many locations, and now the physician has told her she has approx 6 months.
Now out of no where she is first “thinking about chemo” he has offered her Gem/Cisp, now ……..she says she has nothing to loose.
She is having an urgent blood transfusion this morning, and I am a bit beside myself. I told her it is okay to change her mind, but I kinda feel in my heart it is a bit late…and that she should just enjoy whatever time she has left.
Having to respect her decisions 15 months ago, when she denied and refused it, and now having to respect her change of heart, regarding considering it, I am beyong confused.
I am the only strong one in the family at this time. This roller Coaster is just the worst. I just want her to move into my house, move from NY to Maryland and spend whatever time she has left in my home and with my children.
To now start chemo……..she is 85 pounds and obviously her blood counts are totally off, hence the blood transfusion today. oh what to do, what is best, why, why, why, angry today, just tired of it all. Sometimes it gets to be too much, I think the chemo will destroy anytime she has left. Why now? I do not get it.
Stay in touch, sending love and hugs,
roni dinkes
ronidinkes@yahoo.com
or you can find me on facebookThank you Adam,
Please feel free to call me 443-394-6163 or email ronidinkes@yahoo.com or you can find me on facebook: roni dinkes.
Sending much love back to you and your family during this difficult time.
Warm Regards,
RoniDear Adam,
I feel your suffering. Your wife is one, brave, strong lady! Sending tons of love and hugs your way.There are some very good books for children on death: I have bought quite a few.
The one I really like is “The invisible String”, and the “the self help E
lf series are good too, they are geared towards kids.You are a wonderful husband, and your children will keep you strong. My daughter has already told me: that when we look to the night sky, we will see nana in the stars, and that she will always live on in our hearts. My daughter keeps me strong for what is to come. She is my strength, funny, my 11 year old is doing better than I am!
Take each day as it comes, with smiles, laughters and holding hands.
Regards,
RoniThank you so very much for your advice.
Grieving the death of my parents 42 year marriage, and then the constant worry and anticipation of what is to come coupled with my anger at the world is a bit too much.
However, rest assured I started medication to take the edge off. I also am talking to someone on Thursday, I think getting it out and off my chest saves my family from my wrath.
I am thankful for this website.
Regards,
RoniThank you for listening.
This has been the most difficult 14 months, and I fear what is coming, I feel it is coming sooner rather than later.
Sometimes I wonder, how can it get worse, and yet as I see her shrinking before my eyes.
I still see the sparkle in her eyes, and hope in her smile, and she wishes for a cure, a quick fix, like this whole experience is a dream and is just too aweful to be a reality.
Mom’s weight is quite low. Her pain is intermittent. Somedays are fine, others are beyond words….nothing everyday yet. She has percocet and bentyl she takes for pain coupled with tons of gas-ex.
Her oncologist feels she is not ready for hospice, but I fully do not understand the “standards” that permit hospice services to be utilized. My mother is frightened by the word hospice.
She was supposed to come and visit but, that has been pushed back 2 weeks, which makes me sad. Sad I have to sit on a telephone conference call during MD apptointments, because I am not physically there to hold her hand.
My father has moved out of the house after 42 years of marriage. The situation is almost unbearable.
The timing is horrible and beyond words.
We hired a woman to help mom daily 10am-5pm. She makes her meals, acts as a companion, to be there just in case she needs anything.
Sometimes, I wonder how this whole experience will make me stronger?
What lesson am I to learn from the pain.Sometimes, my anger lashes out to those closest to me, and I find it hard to breathe and control my emotions. This waiting game, is exhausting and painful to everyone involved in the horrible experience. Sometimes, I just do not know what to do.
Thanks for listening.
Regards,
Roni
ronidinkes@yahoo.comwe had a similar experience at Sloan and now my mother who is 66, is going to LIJ/Northshore.
She was diagnosed August 2010. Sloan gave her less than 1 year to live. She fired them. She is still alive, very little and feisty, but alive.
My mother did not have chemo, (even thought I tried to push it) but she did radiation. She felt chemo would take away her quality of life. The radiation daily for 5 weeks was bad enough.
You need to listen to your mom, and just respect her wishes. It may not be easy but whatever makes her comfortable and happy is the key. Sending many hugs your way.
Hug,
Ronihello jillybean,
sending many hugs and love your way to you and your brave husband.
my mother also did not want to do chemotherapy. it is 1 year later and she is very tiny but here! she is fiesty and a tough lady.
this is a wonderful website with the most genuine caring people. if you need anything just let us know.
Hugs,
Ronihi suzanne,
my mother was 65 when she was diagnosed. we did recection within 2 weeks of diagnosis, but 2 out of 27 lymph nodes were positive, so we went from itching to stage 4 cholangiocarcinoma…a bit overwhelming to comprehend. this is a wonderful website with tons of information and warm, genuine people who listen without judging and who are in their in your worst hour. It is not a group I ever thought I would need, but am forever thankful to be apart of.
sending you tons of love,
roni
ronidinkes@yahoo.com
and I am on facebook as well.mom had radiation in march 2011, right before noah’s bar mitzvah. her levels are climbing, she is having quite a bit of stomach pain, and she recently is VERY tired? I am not sure if it is dehydration, lack of proper nutrition. she was offered an opportunity to come to hopkins and try a vaccine trial, but have no idea where that stands….
Please stay touch. ronidinkes@yahoo.comDear Becki,
I can totally relate to your emotional pain.My mother was diagnosed 1 year ago. She just turned a young 66, this may.
I honestly can say the last year has been a blur, I have cried SOOOO much, I never knew one could cry so much.
I have physically been present for my family, but emotionally not there for my husband or children, because I feel my mind is in the clouds or researching, or trying to figure or fix this for my mother.
My mother also did the surgery and lived with me for 5 weeks status post. I took the time off of work to help take care of her, I also hired someone to help me.
Please feel free to call me @ 410-394-6163, facebook me (roni dinkes) or even email me at ronidinkes@yahoo.com.
I am here, and am going through the same thing, thank g-d there is this website so people can connect and go through this journey together.
Please stay in touch. Sending many hugs your way.
Regards,
RoniDear Jeff and Mark,
I embarked on this journey 1 year ago with my mother. She had the whipple, and it has been a very difficult recovery for her. She refused chemotherapy, but did radiation. Just know we are here for you anytime. Sending lots of hugs your way.
Warm Regards,
Roni Dinkes
