More Questions for all of you…
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Tiffany,
You are doing great under stressful circumstances. Keep holding on.
I get confused all the time now from chemo. It can be both frustrating and funny. But keep an eye on it because confusion can also be caused by chemical imbalances from dehydration or high amonia levels.
I dont know how to respond to your mothers saying she will do something when she feels better because I OFTEN feel the same way. I am not sick from chemo, just exhausted and sometimes just the thought of something is too much. We eat Sunday dinner with Hans mother every week, but I have cancelled the last couple because I am too tired. The problem is that it can become a bigger problem. You need to stay active to keep up and build up strength. Plus, being isolated can lead to depression which makes you more tired. I dont know that the answer is because I am still trying to figure it out for myself. All I know is that sometimes “when I feel better” is the only answer I can give even though i know it is not the right answer.
Take care.
KrisYou might also check out the side-effects of the chemotherapy agents your mother is being given. The Cleveland Clinic’s Chemocare site at http://www.chemocare.com has excellent information on the various drugs and their side-effects. I’m on Gemcitabine and Cisplatin, and skin rash is one of the side effects of Gemcitabine.
Hi Tiffany,
I am sorry to hear that your mum is having such a hard time right now. We all know what you are going through right now and you are doing an amzing job here in caring for your mum. I went through all of this with my dad and coming here and everyone here helped me so much and you will get a load of support from us all.
I agree with what everyone has said to you about making lists regarding questions to ask your mums doctors regarding her treatments and everything else. I went with my dad a few times to meetings with his specialist and had no list and forgot to ask certain questions etc. It is very easy to forget things, especially when you have just received news from the doctors.
My dads short term memory also got very bad and he got very forgetful. We could not say for certain if that was down to the meds he was on or if it was caused by his amonia levels. As to your mums pain, what pain meds is she on? Perhaps if they are not working then they can be changed. What we were always told is that pain can be controlled so I hope you can get this under control.
My best wishes to you and your mum,
Gavin
Tiffany,
I agree, write down all of your questions and concerns. Then write down the answers. It is so overwhelming you may not remember everything that is said. You appear to be a strong person and great advocate for your Mom, but help and support is always good. Remember too that you now have a second family right here willing to help and support you all the way.
Take care and keep us posted.
Darla
TJ,
Instead of a pic line my Mom had a “power port” inserted. It was a godsend since she could receive contrast, chemo and have her bloodwork done through the port.
You might want to question if this is an option.
You hang in there! We’re all here for you! You are already doing an amazing job as a daughter! Just take it 5 minutes at a time!
Hugs,
PamTiffany I do believe you are over whelmed because it is all in your hands and its time for your family to step up to the plate. Sorry, but maybe a “family” meeting is in order to let everyone know this is a joint effort. Even the “Caretaker” needs back up and to know everyone is on the same page. I don’t think your Aunt meant anything, just trying to be funny to your mom, but when one is so stressed we don’t take frivolity lightly. First things first though and write down all your questions to the doctor and then fire away. Not sure where you are, but has this doctor treated many CC patients? Also recommend getting copies of all tests in case you want a second opinion. Take a deep breath and dive in and you will see how strong this is going to make you and will give you the courage to continue fighting for your mom.
Thank you, to All of you. Tomorrow she is having a central line put in because of her veins being so weak, the have caused clotting and they Blow almost as quickly as they are placed. I will show the Dr. her legs then and the following Tuesday, she begins chemo again and an oral form, as well. I will be better prepared to fire off my questions and demand the answers.
I guess I am in a odd spot because my mother has left my step-father (who promised to take care of her but did not) and is now living with my aunt. I went to see her yesterday and she said “we have more company”…wow, I just thought I was family.
I will figure this all out. Your thoughts and suggestions are exactly what I need. My sister has taken a back seat as well, she being the oldest, so for me to find all of you is what God wanted, so I would not be left in the dark.Thank you and as the questions arise I will ask away.
Tiffany (TJ)
TJ,
I agree with everything Pam has said and yes, controlling her pain is most important. She deserves to be comfortable. There is no excuse for this.
I am hoping you can advocate for her and get things in order.We are all here for you. Take care of yourself, too. Keep in touch and let us know how things are progressing.
You and your Mom are in my thoughts & prayers.
Love & Hugs,
DarlaTJ,
I think the time has come to throw a “stomp down” fit. You need answers.
I have a hard time believing your Mom’s pain can’t be controlled. Pain is exhausting and wearing on the body. This is something your Mom doesn’t need. There are also appetite enhancers (such as Megace) that can be prescribed.
Any skin rash should be immediately addressed. MRSA is rampant in hospitals and any skin irritation is also uncomfortable for your Mom.
The confusion can be due to numerous causes including Ammonia levels in the blood as well as various drugs.
I would make an appointment with your Mom’s doctor and go in with written questions and not leave without answers.
Be sure you have your Mom’s medical power of attorney so you can be privy to her medical reports. I would also ask for copies of her recent scans and bloodwork.
I hate to say it but sometimes you have to push to get answers. You are your Mom’s advocate and you need to be armed with information in order to make decisions.
It’s hard to talk with Doctors. I’m in the medical field and I tell people to look at it this way. You are paying them for a service and you deserve to get your money’s worth.
Please don’t think I’m fussing at you but you really touched my heart with your concerns about your Mom and the lack of information. There is such a special bond between Moms and daughters. I lost my Mom in April of 2009 and I remember how frustatrating the lack of information can be. TJ, you’ll be in my thoughts and prayers. Please let us know how things are going.
Hang in there!
Much love and many hugs!
Pam
Do you think your mothers condition is deteriorating?Make sure she is monitored closely so you can stop chemo if needed and keep discussing and remaking plans if needed.Your gut feelings are important and need to be listened to,maybe you need some quality time. Good luck Janet
T.J. I agree with Ron. You might have to push the physicians for some answers. Much cancer left behind? I don’t quite understand what this means. Hairloss would be minimal but, most likely she will keep all of her locks. I assume that she is receiving Gemzar. T.J. have you spoken with the physician or, is your Mom passing on the information to you?
I am sending all my best wishes,
Marionhi tj…….chemo treatment is very hard on the body, while it kills the cancer cells it also kills normal cells…while my wife was having treatment she would say the same thing..when i feel up to it…….your mom knows her body better than any one else, so when she is ready she will tell you… the main thing is to be by her and get her strong and back to herself….it takes time and alot of commitment from the family….. they also told my wife that she would not lose her hair but it fell out…but it came back thicker and stronger …..the pain meds are can effect her memory, but that should pass….explain to the doctor that she is still in pain and express your concerns and questions to them and dont be afraid to be pushy….sometimes you have to be aggressive with doctors… im sure others here will help you , they are a great bunch of people …praying for your mom….lucille and ron
I went to my moms Dr. appointment last week and here a few things that were pointed out to us. She still is experiencing incredible pain and the Dr. said that they had to leave a lot of cancer behind. If they removed a part of her liver and the lymph nodes that appeared to be “bad” (staged at III/2) and no spreading to other organs, what kind of cancer has been left in her?
I just don’t understand.
I asked what results she was hoping to find after this first round of chemo (4.5 months) and she said nothing would be certain until another pet scan is done.
We were also told her hair would not fall out with the chemo and it is. Is this normal?My mom is so little (96 pounds) and still has a hard time eating tho she is being forced to eat small meals every 1 1/2 hours. The food goes right through her and that too is not comfortable. They placed her on enzyme pills but they make her vomit.
She has also developed an almost s shaped rash on the top of her lower legs, is that normal?Her short term memory seems to be foggy, maybe from the pain meds or not, I can’t be sure.
I have also been encouraging her to have her friends come by and she keeps saying, “when she feels better”….
My heart is heavy, still. I have this need to be by her all of the time. I sit on the floor next to her chair and just want to feel her hands in my hair or hold her hand. I see something different in her eyes that nobody else will admit to aloud.
I want her to come to Palm Springs with me and my sister for a weekend, which is only an hour away from where we all live. but again, “when she is better”. I don’t want when she is better to be when it’s too late.Tiffany (TJ)
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