Cancer Support and Caregivers Who Are Trail Blazers!

[ArkansasPiscesGrrl]

Originally Posted by Countyfem

Rough night, wheww poor Clay fluid buldup in her stomach couldn't get a good breath and they didn't tube her till this morning after the doc saw her...once the tube was in she felt soooo much better...she is finally resting and we hope she is moved to a private room today. Her pain lvl is great she hasn't had to "hit" the little extra button, they still have her on the epiy and it is working really well for her. I feel so bad for her and there's not much I can do but keep watch and hold her hand when she needs it I really feel kinda useless

Will update later! Thanks so much for all the support!

Countryfemme, holding Clay's hand when she needs it and just BEING there is more than you could ever know. Truly an angel you are!

I had a hospital stay once, I was in the most incredible abdominal pain I could imagine, the docs could find nothing to pinpoint the why, so I just suffered. My partner at the time was a nurse, for God sake. She could not bring herself there to visit at all during the 5 days I was there. I should have known by that, yanno?

[Countyfem]

Ok the nurses are going to be soooo ready to be rid of my ass, I rode them HARD today....but if i don't feel things are as they should be I'm going to speak up! I had them in here three times before they finally admitted the N/G wasn't pulling the fluid that it is mean to do and fixed it.
And can I say that Clay is one stubborn butch! Has taken all my fem wiles to get her to do what she needs to do lol I really hope tonight is better for her...lord I hope so.

[SweetJane]

Originally Posted by Countyfem

Ok the nurses are going to be soooo ready to be rid of my ass, I rode them HARD today....but if i don't feel things are as they should be I'm going to speak up! I had them in here three times before they finally admitted the N/G wasn't pulling the fluid that it is mean to do and fixed it.
And can I say that Clay is one stubborn butch! Has taken all my fem wiles to get her to do what she needs to do lol I really hope tonight is better for her...lord I hope so.

Countyfemme,
You keep riding their butts!!!! Clay can't speak for herself (we'll she could but...is loopy from meds). And someone needs to be her advocate. I'm glad you're there!

[DapperButch]

Originally Posted by Countyfem

Rough night, wheww poor Clay fluid buldup in her stomach couldn't get a good breath and they didn't tube her till this morning after the doc saw her...once the tube was in she felt soooo much better...she is finally resting and we hope she is moved to a private room today. Her pain lvl is great she hasn't had to "hit" the little extra button, they still have her on the epiy and it is working really well for her. I feel so bad for her and there's not much I can do but keep watch and hold her hand when she needs it I really feel kinda useless

Will update later! Thanks so much for all the support!

I am wondering which tube you mean? The in the nose down the throat or the drainage tube from the bowel area?

[Countyfem]

Originally Posted by DapperButch

I am wondering which tube you mean? The in the nose down the throat or the drainage tube from the bowel area?

Its the N/G (nasogastric) nose to stomach, she had a fairly uneventful night, couple times she vomited when the nurse was flushing her line as she was already backed up and they push 4-6 oz of saline on top of that..her major complaint at the moment.. every time she wakes up she gets the hiccups!
They decided to leave the epi in one more day, I'm glad of that as her bowels are still not responding. Longer they can keep her off the narcotics the better. She rarely hits the pain meds, which is good, but I fear that will change once the epi is gone.
They are going to get her up and back in a chair today,I'm hoping she'll get to moving around more, that's what she needs to be doing to stimulate the bowel activity. Hurts like hell but I keep telling her she has to work thru it and it'll get better.

[Tommi]

Originally Posted by Countyfem

Ok the nurses are going to be soooo ready to be rid of my ass, I rode them HARD today....but if i don't feel things are as they should be I'm going to speak up! I had them in here three times before they finally admitted the N/G wasn't pulling the fluid that it is mean to do and fixed it.
And can I say that Clay is one stubborn butch! Has taken all my fem wiles to get her to do what she needs to do lol I really hope tonight is better for her...lord I hope so.

Glad to see you are wide eyed and busy tailed about what you see. It is a vicious circle, with the surgery, then the meds which slow down all the internal workings, but she really needs the pain meds as often as she can have em. Which all in all helps it all work out in the end, and they will end the heavy meds. once she is able.

I watched my best buddy go through something similar, and you being at the bedside and observant is a blessing for Clay, and rough on you. Clay prolly won't remmeber much of it later. Spoonful of sugar for the hiccups.

[JustJo]

Hi everyone,

The new TPN pump has been figured out, after 4 calls to the nurse and a few panic moments. She's on it 12 hours a day now rather than 24 because they're trying to "stimulate her appetite".

I got her to eat 5 times yesterday but quantities are very, very small. And, I'm in a bit of an internal tussle because the thing she seems to handle the best is greek yogurt....right when I have concerns about dairy products. Joy.

She has napped a few times...slept 12 hours last night...and is much more comfortable in the warmth of south Florida...so that's all good. Her first appointment with the new doctor is this afternoon...so it'll be interesting to see what's said. I am now inserting myself into all doctor visits....enough of this being in the dark.

[Tommi]

Originally Posted by JustJo

Hi everyone,

The new TPN pump has been figured out, after 4 calls to the nurse and a few panic moments. She's on it 12 hours a day now rather than 24 because they're trying to "stimulate her appetite".

I got her to eat 5 times yesterday but quantities are very, very small. And, I'm in a bit of an internal tussle because the thing she seems to handle the best is greek yogurt....right when I have concerns about dairy products. Joy.

She has napped a few times...slept 12 hours last night...and is much more comfortable in the warmth of south Florida...so that's all good. Her first appointment with the new doctor is this afternoon...so it'll be interesting to see what's said. I am now inserting myself into all doctor visits....enough of this being in the dark.

HANG IN THERE. Great news that you have her in a warm place, is she is eating anything, and you are in the Medical forefront with her.....Greek Yogurt is all good stuff for her.

I know we spend time online looking for Stuff... so, here is a great site--> http://curetoday.com CURE magazine, a free publication for those on the cancer journey, is the indispensable guide for ... Current Issue · Archive · Patient Guides · Subscription ... and you can get a free hardcopy magazine for her to look through.

Protein needs. Tried BOOST PLUS at Walgreens or CVS? Or the CVS brand in small cans too.

I have been caretaking an Ex of long ago, who has lost a lot of weight, has COPD and almost died. We live about 45 minutes apart. I got her to eat 6 to 8 times a day, by trickery. I noticed all she was eating was candy, ice cream, sweets of any kind. So, told her food has to be taken first, then the treats. She is unable to shop for herself, so, she makes me a list now. Coffee Ice cream, candy corn, Dibbs, Snickers. LMAO....
Today, I get an email from Peg wanting Corn Dogs and Mac N Cheese if I come by.

I think of her like a hummingbird. Constant small meals. Finding that BOOST PLUS, Strawberry is her favorite thing in life has been a good thing. She went through 18 last week, which I know was better than the 40 pound weight loss.

So, have a great day everyone. It is a great pouring rainy day here in Southern California.

[Rockinonahigh]

Originally Posted by Countyfem

Ok the nurses are going to be soooo ready to be rid of my ass, I rode them HARD today....but if i don't feel things are as they should be I'm going to speak up! I had them in here three times before they finally admitted the N/G wasn't pulling the fluid that it is mean to do and fixed it.
And can I say that Clay is one stubborn butch! Has taken all my fem wiles to get her to do what she needs to do lol I really hope tonight is better for her...lord I hope so.

Im thankfull u r there for Clay,stay on the nurses about his care anytime u feel its needed.This isnt an easy road he is on so he will be grumpy but it looks like u are handleing it fine...bless u girl for being who u r.

[JustJo]

It was a rough afternoon.

Took Mom to see the new doctor...who was more honest and clear than her previous doctors have been. He was very supportive, but also frank that this type of cancer doesn't get better. They can keep her alive on chemo...but as soon as the chemo stops...the cancer will keep coming back. If the chemo stops, she probably has a few months.

[DapperButch]

Originally Posted by JustJo

I got her to eat 5 times yesterday but quantities are very, very small. And, I'm in a bit of an internal tussle because the thing she seems to handle the best is greek yogurt....right when I have concerns about dairy products. Joy.

Jo, please consider giving her whey protein isolate shakes. Whey isolate protein powder mixed with berries and soy milk for protein and calories. You can throw non dairy ice cream into the blender if she doesn't like it with just berries.

Whey inhibits cancer.

[DapperButch]

Originally Posted by Countyfem

Its the N/G (nasogastric) nose to stomach

That is so odd, mine was in place prior to waking up from the surgery. Glad you said something!

[Tommi]

Originally Posted by JustJo

It was a rough afternoon.

Took Mom to see the new doctor...who was more honest and clear than her previous doctors have been. He was very supportive, but also frank that this type of cancer doesn't get better. They can keep her alive on chemo...but as soon as the chemo stops...the cancer will keep coming back. If the chemo stops, she probably has a few months.

Jo, Thinking about , let alone Talking about palliative care, and end of life are tough.
There are a lor os sites that describe what it is about, but it sure is different with each patient, caregiver, loved one, and family. Other's to talk it over wiht may help. I copied this brief spot below, as an intro. Don't sit alone with this. Reach out if you can, and get some help. Find out what her coverage is for home health nurse visits, etc.

I went through this recently with a friend, and it was good for her and her family to know what to expect.

Best regards, Tommi

" Palliative Care Goals

The goal of palliative care is simply to relieve suffering and improve quality of life. Further goals are then based on the patient's wishes in consultation with the palliative care team.

Read more about determining the goals of care. **

Palliative care is more than just treating physical symptoms, however. Palliative care also addresses emotional suffering and spiritual care needs.

The Palliative Care Team

Palliative care is often carried out by a team of professionals who can address multiple concerns. The team may include:

Palliative care physicians
Palliative care nurse practitioners
Nurses
Social workers
Chaplains
Therapists (occupational, speech, physical, etc.)
The most important member of the palliative care team is YOU. Palliative care should be directed toward meeting your personal goals. It is your responsibility as a palliative care patient to make your goals and health care wishes known.

Learn more about finding palliative care.

[Countyfem]

Originally Posted by JustJo

Hi everyone,

Her first appointment with the new doctor is this afternoon...so it'll be interesting to see what's said. I am now inserting myself into all doctor visits....enough of this being in the dark.

Hello, my thoughts are with you, its great you have put your hat into the ring. I had to do that with my now ex-mom-in-law. The doctors were throwing so much lingo at her that she really only heard/understood maybe a 1/4 of it.
stay strong and remember to take some time for yourself...

[Countyfem]

Better night last night, Clay is getting some much needed sleep. They are planing on taking her off the epi today, everything else is going well as expected.

Thanks everyone for the feedback, I really appreciate it.

[1QuirkyKiwi]

Originally Posted by DapperButch

Jo, please consider giving her whey protein isolate shakes. Whey isolate protein powder mixed with berries and soy milk for protein and calories. You can throw non dairy ice cream into the blender if she doesn't like it with just berries.

Whey inhibits cancer.

As does Spirulina and Red Algae powders added to the shakes.

[Tommi]

Originally Posted by Countyfem

Better night last night, Clay is getting some much needed sleep. They are planing on taking her off the epi today, everything else is going well as expected.

Thanks everyone for the feedback, I really appreciate it.

Thanks for the news. Sleeping away the pain is a gooood thing. Keep your strength up. Don't forget to take care of you, for the days and nights ahead.

[Countyfem]

Private room, epi is out switched to morphine as he suspected the first was causing her nausea, she is more alert and I hope things continue to move forward, would hate to back-step.

[DapperButch]

Originally Posted by Countyfem

Private room, epi is out switched to morphine as he suspected the first was causing her nausea, she is more alert and I hope things continue to move forward, would hate to back-step.

I had a private room and that made me much happier than I would have been in a double room. I was lucky my insurance allowed it, even though they charge you extra for it. I was able to do it because my mom said that she would pay for it, but for whatever reason, the hospital didn't charge me.

I just wasn't up for dealing with any stress around a roommate's (or her visitor's) homo/transphobia after having my gut cut open and 10 inches of my intestine removed.

[JustJo]

So...I just got my hands on the results of my mother's last CT scan....holy cow.

She's been keeping way too many secrets.