Topic: How much more can she endure?

Hi all,

I have not posted for some months now.  My mum is declining quickly.  She was admitted into hospital with a bowel obstruction just after Xmas.  Her pain is always severe, she is bloated, swollen and just out of it. Her heart beat is irregular, oxygen levels low and runs a fever continuously.  She has septicaemia and is being treated with three different types of antibiotics.

I know this might be a little selfish, but I cannot endure it no more.  So how does she endure it?

Since July 2012, she has spent no more than 1 month at home.  Most of the time she has been admitted with some sort of infection. Why does she get these damn infections continuously.

There was a slither of hope just before Xmas when Dr Zimmet said he was going to pursue other options in 2014.  She felt good. I guess there aint any options now.

My sister spends all of her time with mum.  She is strong, but breaks down each time i talk to her.  My dad cries each day.  My brother hides his feelings as best as he can.

Just need to vent.  I feel so sorry for her as we cannot do anything for her. I don't want her to die, but I know she will find peace when she does.

So sorry for the rant.

Lou

Re: How much more can she endure?

Oh, Lou, I so understand. When we started Teddy's Journey I asked God to heal him and towards the end I asked God to take him. Your feelings unfortunately are normal. Your Mum must be one strong lady and maybe the family can take that cue from her. With all these things going on are they making her as comfortable as they can? There are enough different Meds today to help for comfort. Lou I don't know if you are ready for this but I do have a list of the 10 Signs that the end is near and if you want me to I can email it to you.  You never know how strong you are until "strong" is the only choice you have! We are always here so vent away anytime you need to.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How much more can she endure?

Lou,
Your feelings that she will be released if this earthly suffering when she passes are no selfish. I prayed that agod not let my Dad continue on when he was suffering both physically and mentally so much. I did feel conflicted but that's normal. Bless you and your mom.

Willow

4 (edited by Darla Mon, 13 Jan 2014 10:05:33)

Re: How much more can she endure?

Dear Lou,

Feel free to rant all you want.  Everything you are feeling is normal under these trying circumstances.  Take care and know we are all hear to listen and help in any way we can.  We know and understand the pain and conflict you are experiences.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

5 (edited by clarem Mon, 20 Jan 2014 16:49:25)

Re: How much more can she endure?

Hi Lou,

You are not being selfish - just the opposite.  You are willing to take on the loss of your mum to free her of any more suffering.  My sister declined very quickly and in 5 short months there was no hope.  I too was willing her to go in her last 48 hours just so she could be free of any suffering. 

Someone on this forum responded to me at one of my lowest points and commented that anticipatory grief is incredibly hard to deal with.  I so relate to where you are right now so vent away.  You are being incredibly brave supporting your mum and family through this and considering the decision that treatment might no longer the best thing.

Use all of us here to support you.  X

Clare

In the stars now . . . .

Re: How much more can she endure?

Dear Lou,

I am so sorry for all your dear Mum and your family have been through. I hope your Mum can find some peace and comfort soon. Bless you all.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: How much more can she endure?

Dear Ilias,

I am so sorry to hear about your mother. All my thoughts are with you


Teresa

Re: How much more can she endure?

Hi all,

Thank you all for such kindness.

Mum had gastric bypass surgery this morning. 

We are all tired and are hoping she finds some relief.  I am not relying on false hope, but just want her to have a break for a little while. I am hoping they can remove the nasogastric tube and that she return to some normality for just a little time longer.

The Cancer has spread extensively into the peritoneum, but I will provide details at a later stage.

I will get back to you all shortly.

Tale Care & God Bless
Lou

Re: How much more can she endure?

Dear Lou. I am sending a ton of wishes for Mum to have a good healing period and will wait to hear the rest of the news. I hope it is better than it has been as I agree your Mum has been through a lot. I am glad you are going to get some rest and look forward to your next post.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How much more can she endure?

Hi Lou,

I hope your mum and you are getting the relief that you need.
x

Clare

In the stars now . . . .

11 (edited by LisaS Sun, 26 Jan 2014 14:02:46)

Re: How much more can she endure?

I also had, in essence, a gastric bypass (gastro j) surgery back in October because my tumor was constricting my duodenum. The surgery made a huge difference ultimately in how I feel and I'm quite confident I wouldn't be here today without it. That said, it is big surgery and I was not prepared for how long/hard the recovery was going to be.  So, wishing your mom a good recovery, even if it does take time. If I can answer any questions, let me know.


Ps, the nasal gastric tube was the worst. Instant relief when that comes out.

Impatient patient.

Re: How much more can she endure?

I am a big proponent of gastric bypass, but find it not supported by the medical community at large and that I challenge.  Yes, it brings along other issues, but from what I have seen on this site and have experienced with my husband, gastric bypass would have eliminated major problems for him and would do so for others as well.
Lou, I wish and hope for your Mom to benefit greatly for this surgery.  Please keep us in the loop.

Lisa, if you are able and willing to do so would you please be so kind and explain to us the positive aspects of the surgical bypass.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How much more can she endure?

marions wrote:

Lisa, if you are able and willing to do so would you please be so kind and explain to us the positive aspects of the surgical bypass.

Hugs,
Marion



At 130 lbs, mine wasn't for the typical reason. But, after my cholangiogram/PTC drain procedure in October, I was back in the hospital in less than 72 hours because I was so severely dehydrated and could not keep anything down - food or liquid. It took several days to figure out my tumor was squeezing my duodenum, which was the cause of my not being able to eat or drink and the resulting dehydration. The gastrojujenostomy (which is what, in essence, a gastric bypass is) re-routed things around the blockage so that I could eat.

I lost 20 lbs in short order, which I didn't really have to lose, because of that blockage from the tumor. If they hadn't done the re-rout, I don't think I'd be here 3 months later. 

So, even though it's tough surgery, I hope it brings relief to ilias's mom.

Lisa

Impatient patient.

Re: How much more can she endure?

Glad you brought this procedure up. Thank you for the insight. And glad to hear of the relief it has brought.

Willow

Re: How much more can she endure?

Thanks, Lisa.   I strongly believe that others would benefit as well from this procedure. Many of the physicians I had spoken with agree but, I don't see it implemented often.  This type of blockage occurs often causing vomiting which cannot be treated with drugs of any kind.  I applaud your physician, Lisa, for making a decision so beneficial to you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How much more can she endure?

marions wrote:

This type of blockage occurs often causing vomiting which cannot be treated with drugs of any kind.  I applaud your physician, Lisa, for making a decision so beneficial to you.
Hugs,
Marion


That was exactly it. No medicine helped. The internist that was seeing me in the hospital had no idea what yo do, but once we realized he hadn't talked to my surgeon, we got him involved and he knew immediately I had a blockage and what they needed to do.

Impatient patient.

Re: How much more can she endure?

As mentioned previously, I believe that the area of biliary bypass is grossly neglected with our disease.  The affected patients suffer greatly and in my opinion, it is unnecessary suffering that can be prevented with a procedure such as the one you have been able to receive.
I believe that the US is lagging other countries with their approach to biliary by-pass.  This may be related to (in part) the possible legal consequences and/or the institutional reluctance of providing such surgery.  However; I have encountered great support from the medical community at large and have been encouraged by many to pursue ways of pushing for changes in this particular area of possible treatment for our patients.  This is a huge undertaking for the Cholangiocarcinoma foundation; any  input you can provide to us can aid us in establishing a feasible protocol for biliary bypass for those affected by biliary blockage due to tumor progression.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

18 (edited by LisaS Mon, 27 Jan 2014 13:09:25)

Re: How much more can she endure?

marions wrote:

As mentioned previously, I believe that the area of biliary bypass is grossly neglected with our disease.  The affected patients suffer greatly and in my opinion, it is unnecessary suffering that can be prevented with a procedure such as the one you have been able to receive.
I believe that the US is lagging other countries with their approach to biliary by-pass.  This may be related to (in part) the possible legal consequences and/or the institutional reluctance of providing such surgery.  However; I have encountered great support from the medical community at large and have been encouraged by many to pursue ways of pushing for changes in this particular area of possible treatment for our patients.  This is a huge undertaking for the Cholangiocarcinoma foundation; any  input you can provide to us can aid us in establishing a feasible protocol for biliary bypass for those affected by biliary blockage due to tumor progression.
Hugs,
Marion



Whatever I can do to aid in this, I'm up for doing.  Please let me know specifically what I could to to help establish a protocol.  I am very lucky that once my oncologist and surgeon knew that I was in the hospital and dehydrated, they knew just what to do within minutes of getting a CT scan and seeing where the blockage was.

Honestly, living with the surgery has not been hard once I got over being sore (although, at 56, I was in pretty darn good shape before all this started in late September, so my experience may not be typical).  My surgeon chose to do an "old fashioned" normal incision and not do the procedure laproscopically because he said "I was just a skinny girl anyway" and I'd have a smaller incision that way versus the multiple incisions he would do laproscopically.  Tell me I'm a skinny girl and I'm putty in one's hands.

I was just exhausted for weeks after the surgery and that really surprised me - I'm generally a high energy, active person, but man, it was a chore to do anything and I walked around like a little old lady, sort of hunched over and very slow.  But, your abdominal area doesn't really like to be messed with all that much and it fights back at such an intrusion and recovery does take more time than one would expect. 

I'm back to daily walks at normal pace (haven't really gotten on my bike much, but that's coming soon).  I've also used one of those giant balls that you sit on and gently bounce to get some exercise (the physical therapists at Baylor helped me plan out some exercises with it). 

It took a pretty good while to get much appetite back and I had to eat really small meals - sometimes just a few bites and I was done, but taste (and this may be due to chemo, not the Gastro J surgery) and appetite and the ability to eat more than a few bites have all come back. 

Even if the recovery were far worse, I absolutely believe I wouldn't still be here without the surgery.  I was getting zero nutrition, losing weight at an alarming pace and just sick as a dog.

Impatient patient.

Re: How much more can she endure?

Thanks, Lisa, for being so descriptive.  I agree with you in that other than being hooked up to nasal gastro tube, you would not be able to live life as you do now.
I understand that those with prior resection may not be able to undergo biliary bypass however; there are many that would qualify nevertheless. 
I will send to you a personal e-mail via the address you have provided us with.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How much more can she endure?

Hi all,

thanks so much for your responses.  I wish I could provide you with more details, but they are a little vague at the moment,

Mum ended up in hospital several days after Xmas with a so called bowel obstruction.  They immediately stopped feeding her and placed an IV drip into her arm for hydration.  In addition to the IV tube they also inserted a nasal gastro tube into her nose to drain everything from her stomach.  She could not eat or drink.  After many weeks of scans and xrays the doctor agreed to open her up and take a closer look.  A large tumour was obstructing food from flowing into her intestines/bowel. The surgeon rerouted what he thought was the problem.

The surgeon advised no other surgery was possible.  He did not touch the tumour as that was not on the agenda.

The surgeon is hoping she finds some relief, but will be at least a week before she can eat or drink anything.  They currently have a port in her arm feeding her with the nutritients needed.  She is close to non responsive,  but is nearly pain free.

Sorry guys, but that is all I have at the moment.  I will get back to you all soon

Lou

Re: How much more can she endure?

Lou....I assume that your Mom's non-response is related to the medication given.  So glad to know that she is pain free (nearly.) 
My heart goes out to you and your family.  This can be a difficult disease to treat.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How much more can she endure?

Dear Lou, the most important thing is that Mum
is not feeling pain/discomfort right now. She sure suffered enough before. I hope she heals quickly and comfortably and that soon she will start eating again. Thanks for the update and be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How much more can she endure?

Dear Lou,

Thanks for taking the time to update your mom's situation.  Glad they finally did something and that she is pretty much not in pain.  I too hope there will be some improvement soon and she will be more responsive and able to eat on her own.  Try to take some time for yourself during this stressful time.  I know it's not easy, but you need to take care of you, too.

Take care and let us know how mom is doing.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: How much more can she endure?

Hi Lou,

My sister had this bypass surgery.  She was taken to theatre to have the majority of her liver removed but the tumour was more extensive than initially thought so the surgeon did not touch her liver.  He did foresee that the tumour would block her stomach so performed the bypass surgery there and then to avoid having to do it when an obstruction occurred. 

They need to give the stomach some time to recover and for movement within the bowel to start and they will slowly introduce liquids and then food.  I am glad your mum is pain free and I hope she starts to improve and respond to you.  Take it an hour at a time when it all seems to much to get from day to day.  x

Clare

In the stars now . . . .