One patient with glioblastoma still alive nine years later
by MTorok82 on Sat Feb 09, 2013 06:46 PM
Hello. My mom was diagnosed with colon cancer almost 4 years ago. They told us that she would have 2 years to live. She went through chemo, lost her hair, grew it back, etc. They thought they had gotten everything but found out that not only did they miss it, it spread to her liver and lungs. She has been on and off different medications. She finally accepted hospice after they put a stint in her to try and get the biliruben count down. Now that she has accepted hospice, they will not operate. She has started rambling, can't focus on anything specific, and she sleeps more than she eats. When she does eat it's about the size of your middle finger nail. I am so brokenhearted about this because my mom is and always has been my inspiration. My kids know she is sick, but I don't think they realize how close it could be. Last week they told us she would have weeks to live, now they are saying we will be blessed if she makes it to next weekend. Is it the medicine, the cancer or the jaundice that is eating away at her mind??
by Paminnewbury on Sat Feb 09, 2013 08:22 PM
by MTorok82 on Sun Feb 10, 2013 12:40 AM
by myfivesmiles on Sun Feb 10, 2013 02:48 AM
I am so, so sorry. I have been where you are. My mom passed away in the early hours of Monday morning, Feb.4. She was my best friend throughout my entire life, and was an inspirational and influencial, figure in the daily lives of my five young children. She lived down the street from me and we saw each other nearly daily, and talked on the phone sometimes 5 times/day. We were told on January 10 that she probably only had a few months left, but the cancer was aggressive and her condition was declining. On January 29, her doctor told me that he was afraid it was only a matter of weeks....then she passed away barely 5 days later.
Be thankful for the time that you have gotten, and the gift of the additional time. This hit us very hard because my mother was only diagnosed with esophageal cancer in September. Chemo and radiation did not stop the mets, in fact the cancer on her liver grew at an exponential speed.
The most difficult thing was telling my children that she was not going to get better and that her time was limited. I am glad I did not tell them too soon so that they were constantly worried or waiting for the bad news. Instead, they were told when she had a week or two left so they could spend some time with her. They would walk over after school just to hold her hand and tell her how much they love her. They wanted to talk about all the funny, unforgettable memories. That time was special. I told my children to keep a journal about the special things that she did, favorite memories, what they loved best about her. I did not want them to forget the color of her eyes, or the touch of her hand, or the smell of her favorite perfume. I told them to think about everything they remembered and write it down because one day they may forget. That was good for them as it started the healing process.
You know your children best, and you will probably know, or your mom will tell you when they need to know more. My mom actually told me that the time had come for her to speak to the children....so over about 2 weeks (her last) she asked to speak to them one at a time. Those were HER words, and this gave her the chance to have some control over something, even if it was only the words to choose to tell a child that you will not be here much longer. I was glad she spoke to them, after all, I was the one who had to deliver the news to them the morning that she passed away.
Sometimes as patients near the end, they drift from a lucid, conscious state to a loopy, irrational state when even the simplest phrases no longer make sense. This is normal. Patients may also begin to speak to people to have passed away, or try to call them. Another thing that often happens is that patients may start to get restless... if they have been immobile, they may suddenly begin to sit up, or try to get out of bed, or ask to "leave." The disorientation can be a little frightening to anyone who does not understand what is going on, but it is quite normal.
Enjoy any time you have... and take advantage of the moments when she is lucid and clear. Hospice RNs should be able to give you some definitive signs that will give you an idea of time left. Prayers sent for you and your children... hoping you have precious time left with your mom, and take in every moment you can.
Feel free to message me if you feel the need to talk. With the exception of the time frame and type cancer....I could have written your post. All the best.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.