Re: Introduction

Hi Duke,

Here is the study:

http://www.nejm.org/doi/pdf/10.1056/NEJMoa0908721

This is the phase 3 trial that demonstrated a benefit from gem/cis compared to gem alone.  Today, I would imagine many of the people with good chemo response undergoing other treatments that would hopefully further extend their lives.

I completely agree that it is old research that analyzes what happened, not what will happen.  Research and treatments are branching in so many different directions, it is very much unknown the relevant current survival stats.

With all of the different approaches, I think it is very important to look not just at median responses, but also look at the size of the group that had a strong  positive response. 

If anyone is interested, I wrote something a while back that expresses my current feelings on fighting this disease and hoping to win. (and relates to the "lucky 10%-15%" from various treatments):

http://www.cholangiocarcinoma.org/punbb … p?id=11791

Best,

Jason

Re: Introduction

olga, i am so sorry for what you and your beloved husband are having to endure.

perhaps my history will give you/your husband some hope.  i had my 5th liver resection this past feb 27th.  i found my own (first one) tumor in dec of 2002.  my first surgery was feb 2003 and i was NOT offered any other treatment at that time.  i researched and then forced 'kaiser' (my then health insurance) to do a pet scan and a tumor marker.  it was then i found out the cancer had returned.  i was offered radio frequency ablation by kaiser.  the doctor that was to do the ablation had never done one herself.  soooo, i paid out of pocket for ??? i think it was 3 more opinions.  one of the docs i saw was dr lenz at norris cancer center in los angeles, ca.  he advised me to not to do the ablation at that time and to see dr, selby.  i was able to change insurances at the end of 2003.  i met with dr. selby after that and he told me that i was operable.  so i had my 2nd liver resection in feb 2004.  i started chemo in apr of '04 and was on chemo until ?? may '08.  i did have a few months off from chemo during that time.  i had my 3rd resection in aug '06, a VATS procedure (lung biopsy showed MAC infection not cancer); 4th liver resection june '12, and my 5th feb 27th 2014. 

it has been a roller coaster but i've experienced a lot of wonderful moments, events.... 

i have intrahepatic cholangio and was initially given 3 to 6 months.  soooo, in spite of the down times i am very, very, glad that i have fought through so much and have lived for those beautiful moments. 

wishing you strength, hope, and the best for this crazy journey.

barb h



i

Re: Introduction

Olga -
I have said many times that we do not have expiration dates stamped on us anywhere. It might make things easier if we did.....although I would not want to know. Just remember that it's hard if not impossible to guess how long someone might live even without cancer and the chemo. There are many stories on this site of people who lived much longer than initially thought  with and without chemo.
My husband did have surgery with clean margins so there is much debate on if the chemo after really works all that well at keeping it from coming back. My husband's thought was that he wanted to do everything he could to try to keep it from coming back. That was his same thought with the chemoradiation we just finished. But looking back on it, he does wish he had said no to the chemoradiation since the treatment was almost as bad as the disease.
He did tell me in the beginning that he would only do it as long as he didn't feel too bad. And several people have started out that way.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Introduction

Thanks everyone for all the encouraging words. Norbert is still torn between whether to do the chemo or not, so he decided to put it off for another week to think about it more. We were extremely disappointed with the responses to our questions from the oncologist. All we asked for was averages, but got absolutely nothing. He's hoping for more input from people on this site since you folks are in the same boat facing the same cancer he is. The chemo they want him to have is gemcitibine and carboplatin(paraplatin). Two weeks on, one week off, for three rounds, than scan to determine if it's working. Norbert did ask me to ask those of you that responded what stage each of you is in. I tried to look up the history of some of you and it was comforting when I told him that some of your cases were very similar to his. His biggest fear of chemo is getting sick when he feels very good right now. And if he does start it, but then decides he wants to stop, what's the chances that he'll get back to feeling as good as he currently feels?
Julie,
I found a thread where you wrote something about your H pylori theory......I was wondering what that theory was because while Norbert was going through all of the testing to figure out what was wrong with him, they found H pylori and ulcers.
That thread had something to do with a database being put together, which I was also confused about, but would like more info on.
Again, thanks to everyone.
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Hi Olga,

My husband has been on chemo (folfox and oxiplatin) every two weeks since January. He has a slightly different diagnosis of CUP, but they are 90% sure it is cholangiocarcinoma. We were afraid of chemo side effects at first, but he seems to be doing fine except for muscle aches and fatigue. He also has H pylori and has not been treated with antibiotics because the doctor said that the mixture with the chemo would make him sick, so he is one pantropazole (simialr to prilosec) and that has helped. My husband is in stage 4, met. to the bile ducts and lymph nodes. The chemo has reduced the largest tumor in his liver and has been worthwhile. He has been able to go back to work part-time and although he takes pain medication, it is bearable. If you find that the first treatment of chemo makes your husband sick, they they can alter the amount. It is still very much an art when it should be a science!

The study is at The Mayo Clinic and it is a registry of bile duct cancer patients. You can call Nasra Giama at 507-538-0097 and she can give you more info. I know this is a very confusing time. We are there to help you through it, Diana

Re: Introduction

Well, we were torn between chemo or not.
Norbert started chemo, gemzar/carboplatin on June 10, 2014. It was supposed to be two weeks on, one week off. After one round, we were looking forward to one one week off. That was the week of June 24th. The weekends after treatment were very hard on him so we resigned to the fact that the weekends would be days that we would have to take it easy and not do much.
Norbert has been taking hemp oil (Rick Simpson oil) since he's been diagnosed. When he first started taking it, it made him very loopy(slurred speech, unbalanced, very tired) sometimes lasting well into the next day. After a couple of months taking it every night, his body adjusted and he no longer had those affects. On June 25th, he started taking a hemp oil that we got from a different source. It was different in color but supposedly was more pure and was pharmaceutical grade. That's what we were told. It was supposed to be better than the stuff that he had taken before. I gave him the same dose of the new stuff as I had of the old stuff. That same night we received a phone call that his platelets were very low. He had an appt. with the oncologist on June 27th, so we didn't worry about it.
The next morning I did my usual, went to yoga then to work. At work, I received a text from one of our sons that I misread and didn't worry about. Later that day, he called me and told me that Norbert had fallen and just laid there. He heard him fall from another room, so he ran to him and  helped him to the bed where he fell asleep. He said he was acting just like he did when he first started taking hemp oil. I figured that the hemp oil must have been much more potent than what he was taking and that he would have to sleep it off. Again, I knew he had an appt with the Dr the next day so I didn't worry. It was our youngest sons 18th birthday and we had many family members (who didn't know about the cancer) coming over to celebrate. As family came over, our sons and I alternated between Norbert and the guests. I made the excuse that he didn't feel well.
The next morning, it took unusually long for Norbert to get ready for his noon appt. I chalked it off to the hemp oil and thought possibly the low platelet level. When we got to the Dr's office he decided to give him a platelet transfusion and put off chemo another week. We were at the hospital until early evening. When we got home, some neighbors (who knew about the cancer) cooked for us. Norbert was still hardly speaking and when he did, he struggled to get the words out and was still extremely slurred. I made a call to find out what I needed to feed him to get the hemp oil through his system because I still thought it was the hemp. I was told there no way the hemp oil was in his system 48 hours later. I then thought it had to be the low platelet level and figured the transfusion would make it better. Than the neighbors that were over mentioned that he looked like he may have had a stroke. That never occurred to me, but for the rest of the night it was in the back of my mind. 
The next morning I got him ready, which again took hours, and I took him to the hospital his cardiologist was out of (which is a different hospital than his oncologist is out of). There, they looked at him and immediately admitted him.  He had had a stroke to the right side of the brain that left his left side weakened. He was there from Saturday, June 28 to Tuesday, July 1st. While there, we decided to move oncology from the other hospital to this hospital to keep all of his doctors under the same roof. It dawned on me that the oncologist was only concerned about the cancer and I needed to have all his Dr's under the same roof for his best care overall. It was disturbing that he had spent 6 hours at the other hospital the day after the stroke and nobody there saw it.
After being released, he became very depressed. I have never seen my husband like that and it was breaking my heart. I was trying to do everything I could to distract him. We made plans to go to the lake house for the 4th of July weekend. He was at least looking forward to something. We started out on Thursday, July 3, headed north. We stopped at a store while my sister-in-law, who we were following, ran in to pick up a few things.  I had been holding his hand since we left the house. While waiting for her, Norbert asked me to squeeze his hand. I told him I had been squeezing it. He said he couldn't feel his left arm. I asked him for how long. He said for about an hour. I immediately took him back to the hospital where they once again immediately readmitted him. We're still here and don't know when they will allow him to go home. They're considering inpatient rehab. The oncologist that we will be seeing out of this hospital was a little too forward than I was prepared for. We will have to put chemo off until he regains strength. If he doesn't regain strength, than he may not be able to continue with chemo and we may have to look at the few options still available to him. It certainly wasn't what I wanted to hear, but by the same token I appreciated his frankness and telling me that he wouldn't recommend chemo if it was only going to make the remaining time miserable for him. I'm only hoping that he will make a nice recovery from the stroke so we can address the cancer.
We had been hiding Norbert's cancer from most except for a few close family and friends but now we were not going to be able to hide this. We ended up telling most people about the stroke. This worked to end some of the rumors that have been floating around for quite a while.
I haven't told anyone about the conversation with the oncologist yet. I'm hoping for a quick recovery from the stroke so I won't have to have that conversation with anyone.
I've learned to take one day at a time and just hope for the best. We'll see what tomorrow brings.

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Dear sadwife, I am so very sorry to read this post about Norbert. Not sure what to say about the hemp oil except I am wondering if the ONC ok'd it.  Guess I am more scientific so to speak as we have yet to see anything thing "natural" that helps CC. Again, I hope the ONCS know about it. I think Rehab is a good idea and I think for insurance sake you need to go right from the hospital to be covered. So sorry what you both are having to go through and thank you for updating us. Please keep us posted as we really care.

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: Introduction

Thanks for the words of support, Lainy. And yes, the oncologists are aware. Whether they approve, I don't really care because no dr could do anything to help Norbert stop the dry cough that was keeping him up all night for the past year. It stopped with the hemp.  So we informed all his dr's of the hemp oil and none of them have objected. If it helps the CC, I guess that would be a bonus. But that has yet to be seen.
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Dear Olga, great! I am wishing for this to all be solved tomorrow! I think the worst is just not knowing what can be done.

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

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: Introduction

I'm sorry that I did not see your post and question about H. Pylori.  What is known in research (in particular from Thailand) is that  H. Pylori can exist in the bile ducts and was found in a significant amount of biles ducts of CC patients in a large study.  As to how it gets into the bile ducts is another matter, but one theory is that a small few of the H. Pylori bacteria move from the stomach into the bile ducts via a gerd type motion (that's probably not a good discription, but best I can do right now with chemo brain).  Once in the bile ducts, the H. Pylori sets up house, grows and causes inflammation of the epithelial cells of the bile ducts.  Once that happens,, over time, the area gets further irritated and eventually, precancerous and then cancerous growths begin. 

I was found to have antibodies to H. Pylori, but never have been treated to get rid of it.....yet the poo test showed I no longer harbor the bacteria....so what happened to it.  The Only explanation I can figure out is that it was "cut out" during my resection surgery when they removed my left liver lobe.  I know that during the year before I was diagnosed, I first had C-Diff, a bad bacterial infection of the colon.  That took Vancamiacin , a very strong antibiotic to kill off the C-Diff.  Tests proved it was gone, but diarrhea continued just not quite so bad for the remainder of the year.  Twice I was given a Z-Pack antibiotic and twice, the diarrhea went away on the 5th day of the antibiotic and everything was normal.  The first time, it came back two months later.  The second time, it didn't come back ....but before one month had elapsed, I had surgery to remove the liver lobe.  Vancamyacin can not kill H-Pylori.....but the Z-Pack is the right type of antibiotic to have an "effect" on H. Pylori.....just not kill it off completely.  Thus, in my mind, the only way that H. Pylori was removed from my system was by cutting out the area in which it had settled and caused inflammation......that left liver lobe.  H. Pylori is known for causing ulcers in the stomach...and eventually can cause stomach cancer.  I hope that answer your questions about H. Pylori and my theory.    Please feel free to share this with anyone you wish...including Norbert's doctors.  BTW...the meds to get rid of H. Pylori include two antibiotics and a prescription Prilosec type medication all at the same time.

I just caught up with yoiur latest posts about Norbert.  It sounds like you've been having a very rough time of it.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Introduction

Hi Olga,

I just wanted to say how hard this must be for you both.  Coping with CC is hard enough but when other medical issues halt your plan of attack it makes you feel helpless.  I like your one day at a time approach.  That got me through my darkest, hardest days, sometimes even taking it an hour at a time. x

Clare

In the stars now . . . .

Re: Introduction

Well, here we are.....3 weeks minus 48 hours......and Norbert is still in the hospital. They're talking about releasing him on July 24th. Not soon enough for Norbert.

I've done a lot of reading on this site in the last 3 weeks. The stories both heartbreaking and joyous. I feel like I have gotten to know many of you over the last few weeks. As if for the the first time since coming to the site, I was listening instead of talking.
I'm so jealous of those of you that are able to go on for years or find it early. Not that I'm not happy for you, but I'm still jealous just the same......if that makes sense.

Lainey, I think it was you that had a desmoid tumor.....I also had a desmoid tumor removed from my side about 8 years ago at Mayo, MN. Followed by radiation. I never gave it a second thought after getting it done, until now. It was because of my experience at the Mayo that I wanted Norbert to go there. And in the end I felt cheated because of the way they wrote him off. I get angry when I read stories from many of you how the Mayo helped you....yet they did nothing but send us home empty handed with no hope.

Funny how when something like this happens all of a sudden we're not invincible anymore. It no longer is something that only happens to someone else.

I liked the idea of someone suggesting years ago a way to search everyone here.....kind of a searchable database. I tried finding others in our shoes here in Michigan. Couldn't seem to figure out a
good way to do it.

Anyway, Norbert got transferred to inpatient rehab last week. He does OK when he doesn't feel that the therapists are talking to him like a 4 yr old or that they're giving him "stupid kid" games. Unfortunately, he had multiple strokes to the right side of the brain that left his left side weak. He also ignores looking to the left so he bumps into things and is not always steady on his feet. So, of course, the therapists are trying to make him acknowledge his left side. He just doesn't like the way they're going about it and doesn't always cooperate. This is so disheartening to me and I try to explain it to him. He seems to understand, but he's angry and takes it out on the therapists for trying to do their job. Not sure how to handle this.
The Dr's have told me the stroke was caused because he has cancer. They said when a person has cancer they are more prone to having strokes because of the cancer. Has anyone ever heard this before? Norbert was on blood thinners for years and still had a stroke, which makes me very scared.

Before he got here, he was taking zofran for nausea from chemo. Oddly enough, he didn't have nausea or vomiting during chemo. It started after the stroke and has had it ever since. It makes it hard for him to eat. He also keeps running low grade fevers that they can't find any cause for. In reading through this site, I remember reading that a lot of CC patients run unexplained fevers, so I'm guessing that I shouldn't be too concerned with it. As far as the nausea and vomiting, I don't know if this is cancer or stroke related. Hiccups are another one that he gets so often and sometimes leads to vomiting.
Going home will be a challenge we hadn't thought of until yesterday. I thought being hit with CC was a big blow but I never thought about the impact the stroke was going to have on the entire family. When we get home, Norbert will need 24/7 supervision. It will be mostly myself with our sons helping out when they can. Just when I thought things couldn't get worse, they do.

So, Norbert has had an internist, a cardiologist, a neurologist and an oncologist seeing him here while he's been here. Two of the four Dr's have mentioned hospice to me. I understand and appreciate the oncologist for telling me he wouldn't recommend chemo to a patient who barely has the strength to get out of bed, but how do we know that he won't recover quickly and regain much of his strength? And how do we know that he won't want to continue with the chemo? Maybe its just me, hoping and wanting him to be here by my side for years to come. But as I mentioned before, I would respect whatever decision he makes, no matter how heartbreaking. He's always been my rock and I can't imagine being without him. Although, I know deep down that everything will be OK.
Just one day at a time.....that's all I can handle right now.
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Dear Olga and Norbert, my own brain tells me that Norbert definitely should have Hospice. It does not mean the end but you cannot do this alone. I do have something for you for the hiccups. After Teddy's Whipple he hiccupped for 3 months and NOTHING worked. Then we ran in to a Pharmacist friend who suggested Brioske (sp?) It looks like ALka Seltzer in a blue container and you can get it over the counter at CVS or Walgreens. He took it 2 times  and lo and behold no more hiccups. The hiccups really drain the patient big time. I mentioned it to someone from the UK and they had an Uncle in the US FeD Ex some to them as they don't have it in Europe. She said it worked like a charm.  I believe Teddy also used it for upset stomach. As for you having the strength to get through this I look at that this way ...Teddy was such a rock for me, the least I could do was to be strong for him. You never know how strong you are until "strong" is the only choice you have!

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: Introduction

Dear Olga,

I am so sorry for what you and Norbert are going through.  Having to deal with the strokes along with the CC just multiples everything.  I too think getting the help of hospice may be the answer for the moment.   You need all the help and support you can get right now. 

As for how you are feeling, I totally understand.  I too, although glad that some are getting treatment and doing well, am sad, angry and probably at one time had  some feelings of jealousy that Jim was not one of those lucky ones.  He was too weak for any treatment and died before even coming home to hospice.   What you are feeling is normal for what you are having to all deal with right now.

I have seen a lot of things change in the 6 years since I lost Jim to CC and I have seen a lot of changes in treatment and  more awareness of this disease.  Everyone is different and you have to believe that there is help & hope out there.  Try not to worry about the future.  I am proof that you will be OK  no matter what happens.   Just try to stay strong and deal with things as they come, one day at a time.  I know it is somewhat of a cliché, but God truly does not give us more than we are strong enough to handle.  Some days it just seems that he has more faith in us than we do.  You will get through this and you will be OK.   Know that we are all here to help and support you in any way that we can.

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: Introduction

Well, Norbert finally got released from the hospital yesterday. I think the therapists were glad to see him go because he was being so difficult. He's been recovering very nicely from the stroke but still needs 24/7 supervision. Between myself and my sons, we should be able to handle it ok with other family members jumping in occasionally to help when they can.
In any case, we talked a few days ago and he told me that he did not want to do any more chemo. He was glad the doctors were advising against it. As much as I didn't want to hear this, I told him I would respect his decision. We also discussed letting the rest of his family and employees know about the cancer. I just want the employees to leave him alone about business and I'm hoping that if they know than they'll leave him alone, even if he should show up at the office.
There are some trips that we have been wanting to take and so we have decided to take them soon. They will be road trips that we will just pack up the car and leave with no definite plans or destinations. We've been talking about doing it for so long and I think its time. He's excited about it and we both need something to look forward to.
Just One Day At A Time!!!
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Dear Olga, Good News as I think just being home has its own way of helping anyone as we all know there is no place like home! I think some short road trips sound really nice and just make sure you have everything that Norbert may need along with his ONC phone number just in case.
You have the right idea in that if it is a short time or a long time ahead of you, live it up as much as he can. Life is for the living!

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: Introduction

Olga.... As Lainy suggested, you will want to make sure to have important phone numbers on hand.  Not sure whether Norbert has a stent, but if so, please make sure to carry along the biliary emergency card as well. 
http://cholangiocarcinoma.org/biliary-e … tion-card/
Have fun and enjoy your special time together.
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: Introduction

Thanks for the advice, but Norbert has never had any symptoms from the cancer so he has no stent. The only thing we have to deal with at this point is the setbacks because of the stroke. And even those are getting better every day. That's why we figure we might as well finally take those road trips we've been talking about for so long.  Norbert and I have always been a "fly by the seat of our pants" kind of people.  So, off we'll go.
Hop in the car and see where we wind up!!
One Day At A Time!!!
Olga

And I do have all of the docs numbers in my phone.

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Olga,
I hope you two have a blast! I love spontaneous adventures, they create such great memories! Safe travels and can't wait to hear about it.
Melinda

Re: Introduction

Make sure to take time to stop and smell the roses.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Introduction

What do you say to someone who's scared? I'm scared for him and it breaks my heart to see him like that. It kills me that I don't know how to comfort him and that I can't do more. I do what I can to stay strong for him but I have my meltdowns. We are Catholic but don't practice. Not that we don't believe in God, but after this years events I am left questioning God for the first time. I used to always say, "Everything happens for a reason, and God wants me to learn something from this."  But now, all I can find myself asking God is "Why???!!!"

One Day at a Time!!! That's all I can do now.
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Dearest Olga, I know  how you are feeling as many of us have felt the same and very sadly it is normal to feel so sad. Looking back I guess that I just wanted to make the most of every moment and Teddy's only request was that I don't let down in front of him. He had steeled his mind from the beginning for what he knew was to come and if anyone broke down in front of him he felt it would weaken his resolve. For us it all worked, not everyone can do that. Maybe some short walks for yourself would help and as I have said I would get in the car, drive around our neighborhood and put music on and sing as loud as I could and that seemed to relieve a lot of stress. After about 20 minutes I would go home and felt relaxed again. We don't know and may never know the why and what for, I still don't after 4 years.  I have learned not to question it anymore and perhaps he will tell me when I see him again. I have found great comfort in being a believer that I will see him and that he does come around me. I can just feel it. Perhaps you could talk to a Social Worker or a Clergy and it might be a good idea to talk to your own Doctor and get a mild anti depressant to help you get through this terrible journey. Wishing you the best and also wish I could take all this away with a magic wand.

I asked for strength.     God gave me difficulties to make me strong.
I asked for wisdom.      God gave me problems to solve.
I asked for prosperity.   God gave me brawn and brain to work.
I asked for courage.       God gave me dangers to overcome.
I asked for patience.      God placed me in situations where I was forced to wait.
I asked for love.             God gave me troubled people to help.
I asked for favors.          God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed.                           By Aaron Hoopes

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: Introduction

Olga.......please know that when touched with this cancer emotions of despair arise and meltdowns help us regain our balance and give us the strength to move onward.  This is not an easy road you are traveling - none of us are prepared - and none of us had prior training.  Know that you are doing everything in your power to ease the situation and every so often read through the Caregivers Bill of Right

"I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he/she were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express difficult feelings once in a while.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn't matter if my loved one knows that she/he is doing it or not.)

I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

I have the right to take pride in what I'm doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help."

(Author Unknown)

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: Introduction

Thanks,
It still doesn't make me stop wishing I could do more, or make me stop asking, "why", or stop wishing I would wake up from this nightmare. But, it does help me get through another day. Before the stroke, Norbert was his old self dealing with the cards life dealt him the same as he always did. Since the stroke, he's not himself and it tears me up inside to see him like this.
I still get to yoga when I can and I never feel guilty because its what's gotten me through this year, so far.
One day at a time.
Olga

One Day at a Time.......One Moment at a Time
Norbert and Olga

Re: Introduction

Olga,

Just know that you are not alone.  We all  understand and many of us have been there.  You are already doing what I was going to suggest.  Try to take time to do something for you when you can.  Yoga is a good choice.  It won't change things, but will give you a well needed break and help to keep you sane in this often crazy world of CC.   And the most important thing, take it all as it comes, one day at a time.  smile

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.