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(20 replies, posted in General Discussion)

Hi Jen we haven't chatted in a while. I sent you an email through the forum it had been so long since I wan on line and took me a bit to find your posts.  Needless to say I now have an update.  I am so sorry for your dad's passing. My mother passed away in September only a few months after your dad.  She too was trying to get into the Hospice you spoke of but there was no availablilty it was her favourite when we were looking as well.  Her home care nurse would not allow her to wait though and urged her to take what was available.  She ended up picking Southwood.  A little far since me, my brother and her sisters and brothers all lived in the North but a very good facility as well.  She brought in all her favourite things from home, even small peices of furniture they let her do whatever she wanted. It had a really nice garden terrace we spent a lot of time on before she got too sick.  My mother was such a social butterfly there, she chatted it up for hours with a lot of the staff particularly one of the nursing aides that spent most of the time with her helping her with daily necessities.  They became pretty close.  She also touched a lot of the patients there and became an emotiional support for many of them until she couldn't speak anymore.  The chaplain said there was a specific patient named Tom who had been admitted only days after my mom and fell into a huge depression.  My mom was the only one that was able to bring back his courage to eat and continue on.  She said she hadn't seen such displays of courage like hers in a while.  These are things I will never forget.  I really enjoyed reading your posts about your dads last days and the words he spoke and knowing that there was something there on the other side to greet him.  I was never to sure about that with my mom she spent her last days fighting so hard to get out of the bed and talk i just don't think she was relaxed enough or at ease enough to eperieance that peace.  I try not to think too much about her last days though. After reading what you posted it gives me hope that there were people and something there to greet her on the other side even though she didn't speak of it.  Our parents were both the same age and went through theire journeys at very close intervals.  I am so happy your dad got to go to that Hospice I know first hand how nice it was. I hope they are both happy and at peace wherever they are and maybe even exchanging words.

Hope we get to talk soon my heart breaks for you and your loss I know how you feel as well as everyone else on this forum does.  For me I struggle so much since I'm not even that close with my dad she was all I had and we were best frieds. You can't even imagine how to carry on without them, but surprisingly you do and it's something we should be very proud of ourselves for.

Just want to let you know your in my thoughts, take care and hope to talk soon
Janet

Alglog, my mother also has a stent and was told repeatedly to cap the drains but everytime she did it made her very sick.  When you cap off the drains it keeps the bile inside you which is needed for digestion but when she closed them off it backed up insider her and made her very ill.  Her alternative doctors told her to leave it open and listen to her body as that is the only time she felt better so that is was she did.  They tried to take away her external drain bag since they were convinced the mental stent inside was working fine but she insisted on keeping the drain bag so she could control clamping and unclamping.  She leaves it open all the time now and feels quite better.  She was also rejected for chemo and radiation because they thought she was too weak, in fact they only gave her 2 months to live but now 5 months later and after herbal supplements and heavy accupuncture therapy she has regained her color, maintained weight and gotten back some energy.  On her lost oncologist visit they said they were very impressed by her improvement and are now going to start her on some chemotherapy!  There is always hope.  If he feels better with the clamp open keep it open and talk to his doctor.

good luck!
Janet

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(8 replies, posted in General Discussion)

He looks very good.  So nice to see!

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(15 replies, posted in General Discussion)

I am so glad to hear that, I have been thinking about you lots lately.  That update just made me cry buckets! He is an amazing person.  He needs to just keep living and not let his sickness dictate his life which is exactly what he's doing.  Keep it up and please keep posting so I can see his progress

take care
Janet

that story sounds exactly like my mother's, (minus the chemo and tumor shrinking). She is unoperable with the cancer starting right in the same place on her main bile duct at the branch as well.  It is now in her liver as well unfortunately but she has been juicing, accupuncture, positive thoughts and calmness.  They discouraged her from chemotherapy as they were concerned cause she was a little weak but she has improved over the last few months.  Energy levels better, and amazing color and appetite.  Just having some issues now with extra pain and fluid.  We are all so afraid the tumours have grown and are waiting for a CT.  I have sent her your story so she can read it for motivation.  I am so happy to hear of your success!! I hope this can be possible with my poor mother too.

Take care of yourself and thanks for the uplifting story.  It lifted my spirits.  It has been such a struggle!

Janet

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(26 replies, posted in General Discussion)

Jennifer I have been wondering how things are going with your Dad I have been thinking about you lately.  Could you give me an update?! Hope you get this message.

Janet

Has anyone ever heard of GNM, German New Medicine.  My mother has heard about it through her physiotherapist and homeopath she has been seeing.  They have been educating us on this theory lately it sounds interesting but I'm not sure what to make of it?

Janet

thankyou kentuckyJack I will try that.  I find it strange that our oncologist has said there is nothing they can do for her on 2 occasions now as far as chemo at this point based on a 15 minute consult judgement on her energy level.  He claims she is slightly too weak but meanwhile she is fending for herself everyday.  Yes granted she needs rest breaks. but she is coping just fine and has even gained 4 pounds in the last 2 weeks.  It is apparent to me that maybe that is a sign she should steer away from chemo even if they offer it to her later.

Hi Pauline as far as eating it will probably be a bit of a battle until he learns what his body will accept and reject and what not. Hopefully he will find a pattern and able to figure out what works for him.  For energy my mother has been doing heavy accupunture on pressure points accompanied by heat on pressure points as well.  This combined with therapy for her mind/emotions. I've been reading her You can heal your life, Louise Hay.  Her energy has picked up quite a bit. Maybe you should try the accupunture.  If you can get some energy back it might produce a domino effect on his appetite as well. (Bring up his spirits therefore increasing appetite)

Hope things improve.
Janet

My mother has tried marijuana although everyone has different experiances with this it has worked well for her as far as appetite stimulant, give it a try.

best of luck
Janet

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(32 replies, posted in Introductions!)

Andie youre dad has not had any chemo at all to date? Sounds like he is doing very well considering! My mom can't have chemo either and still takes care of herself. She is very tired by the end of the day but pushes through it. She is doing accupuncture and chinese herbs for energy since we have no other options at this time.  She is also on pancreatic enzymes to help digestion, strong pain meds and stool softeners along with vit B, D, iron and fish oil.  (She had a little bit of vitamin dificancy show up in her blood work). She is fighting her way through.  Hopefully this second doctor will be helpful to you we are currently waiting for a second opinion as well our first oncologist offered nothing unfortunately.

hope everything works out for him
Janet

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(32 replies, posted in Introductions!)

Andrea it is good to hear you're mom is strong enough for chemo.  Our stories sound very similar only my mom cannot have the chemo right now they thinks she is a littly too weak,  Be strong and supportive for her she is a fighter! Just like my mom is she is trying so hard and I know have to be strong around her.

take care of yourself
Janet

Yes I realize I need to go through our oncologist, unfortunately they have nothing to offer her, they've pretty much given up on her.  This is what makes if frustrating. I will have to wait and see what the other one says I guess.  Thanks for the insight I see that PDT is very hard to come by down here unfortunately.

thanks for the support
Janet

Hi Gavin and Patty that is exatctly what I was thinking as well! Unfortunately I was unable to attend her oncoloist appointment the other day, but her and my brother asked about it and they claim it is not used for biliary cancers and they would do it if the cancer was in her esophagus.  I've read it being used for bile duct cancer everywhere. I wish I was there to have challenged him on it maybe he just needed some persistance?? I don't know.  We are waiting to speak with another oncologist, but apparently that is gonna take weeks.  I guess I need to try and speed that up.  If anyone has any insight let me know.

thanks so much for your help!  I have a really strong feeling this may help her.

Janet

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(32 replies, posted in Introductions!)

Hi Jen good to hear from you! I read a general update you had posted a while back, but I can't seem to find it now.  Is there gonna be a bench in you're dad's name? That sounds very nice.  I'd love to hear the story. How is he holding up? January is getting closer and closer every day.  If you and him both really believe I have every faith he will make it to that point and further. If you're family has strong energy it will resignate to him.  I'm starting to believe in things I would have never gave a second thought to as you can see! smile

My mom's MRI came back with significant growth in the nodes as well as liver and ducts.  Don't know exactly what "significant" means and if that is considered a lot of growth or a little but I guess it doesn't matter. I'm not sure what i think of our oncologist I get the impression he doesn't see her as a person worth his time.  All he talks about is ways to keep her comftorable and never any real treatment options.  He has nothing to offer not sure what to make of that.  I guess he means well.  We are gonna try another opinion with a different oncologist the nurse says that's commonly done and she is gonna arrange it for us. We have to wait a few weeks.  We asked him about photo dynamnic therapy and he said it's not used for her cancer, but then i read about it being used on bile duct cancer all the time.  It's very confusing. She had lost a lot of energy there for a while and increased in pain so I knew there was growth.  She also lost her will to fight along with the energy and had a bit of an emotional breakdown.  Needless to say last week and weekend was horrible for me! Her and I both had reached the lowest point possible since this whole thing started but that night I prayed so hard for her and sure enough the next morning she woke up with a surge of energy which has lasted 2 days now.  Not sure how to explain it but it doesn't matter my point is things can change so quickly from one moment to the next. If it looks bad it will turn around at some point. 

Let me know how it's going
Janet

My mother is stage 4 unresectable and we were told that palliative chemo was our only option, but she is too weak for that at this point.  On that note she is still able to take care of herself, prepare things and general hygiene as well, but it is an effort for her and she is very tired by late afternoon.  This is a very sensitive time right now and I feel desperate to find something that can provide any help to her while she still has some energy to do so.  We are fighting against the clock unfortunately!  Sometimes it is such a hard battle to try to determine what is best when it comes to alternative, conventional. or both. It is evident for her though that our only choice is alternative care since our oncologist won't give her chemo at this point which obviously made the decision very easy for us.  Is there anyone that knows of any really advanced and well recognized alternative treatment clinics??  We are even willing to travel if not too far. We are located in Alberta, Canada. Can anyone give me any reccomendations?? I feel pretty helpless and want to help her so bad!?

This is so hard and I fear i'm running out of time.

thanks
Janet

BW I am happy to hear this is working for you. Thanks for telling us your story. I wonder if my mother is a candidate?? Her oncologist never brought this up as an option.  I will bring this up on her next oncology visit.  Does anyone know what is required to be a candidate.  My mother is unoperable and in stage IV.  However the tumor has not yet spread to any other organs she just has 2 nodules in her lower abdominal cavity aside from the liver.

Janet

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(5 replies, posted in General Discussion)

Hi I'm so glad you submitted an update I was trying to find you earlier to check in on how he was doing.  I'm sorry to hear he's not up and around as much as before. I wonder if accupuncture therapy will help for his increased pain.  My mother has been trying it and I think it has helped her somewhat.  Let me know if you would like to know where she's been going.  I feel for you and understand what you're going through.  I've been having a rough couple of days as well emotionally.  Does he have any favourite books? I find that when things get really rough I read to my mother and it's very relaxing for her.  Try to stay strong and think positive don't let your mind wonder. I will pray for you guys.

thinking of you
take care
Janet

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(32 replies, posted in Introductions!)

Jen How is your dad doing now? Has he picked up a bit of energy? My mom is still the same, not better not worse.  She's having an MRI soon to see if the cancer has spread.  Currently it is in her lower abdominal cavity as well as liver but I'm praying it hasnt moved much.  Her energy lever is not bad.  She has been drinking some chinese herbal teas and getting regular accupuncture which I think has helped a little.  If you'd like to know the clinc she's going to i'll let you know.  I am also going to speak with someone who specializes in raw food diet to try to help her out.  Let me know if you want me to pass any info along and how you're dad is doing

take care
Janet

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(32 replies, posted in Introductions!)

Jessica I am so very saddened to hear about you're husband.  He is the same age as me and we are only days apart on birthdays.  This forum is a great place to release your feelings and you will find lots of support.  I have to come to terms with the sad fact that i have a hard road ahead of me.  Just remember that he no longer has pain and he is at peace.  Time will heal everything for you. Try to be strong and come chat as often as you need.

thinking of you
Janet

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(32 replies, posted in Introductions!)

jen I have to make this brief on my way to work.  Her surgeon was Dr. Elijah Dixon.  She actually had an incision and exploratory surgery before they diagnosed her with stage 4. Did you're dad have an incision as well?
Im thinking that might have been the reason they waited so long to send her on to oncology (healing time and all)?? Not sure though.  I guess that's neither here nor there it's in the past.  Let me know if you had the same surgeon.  We didn't have a very good experiance with him.  It was evident he gave up on her once she was past surgical intervention.  Never returned phone calls and we never saw his face again afterwards during all the times she was admitted in and out of hospital after the surgery.  We only saw residents from his team and even that would take forever.

We'll chat again soon
Janet

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(32 replies, posted in Introductions!)

Jennifer, can't believe i actually found someone from Calgary that's cool! The appointment didn't go as well as we thought.  They can't do much for her because she is too weak for chemo right now.  The reason she is so weak though is because she has been in hospital fasting for the last 3 days.  I explained this too him and he is going to see her again in 2 weeks too see if she is stronger.  He stated that the chemo would only buy a few months for her though if she chose that route.  I am wondering did they say that to you guys as well? Maybe that is just something they have to say to everyone in order to re-inforce reality which I can appreciate.  If you're dad was instructed the same and decided to try it regardless that sheds some light that it could help us more then we expect.  I know everyone is different though.  I'm glad to hear it is going so well with you and you're dad.  My mom does have the nursing assistance and homecare.  She really likes it.  If you're dad becomes a little more open minded you'll find it helpful for everyone.  Especially the palliative nurses they have been so great.

If you have time keep me posted nice to chat with you

Take care

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(32 replies, posted in Introductions!)

Hello everyone thanks for all your support youre so great! I don't even know where to start to explain all that we have been through.  First of all i'm from Canada, Calgary Alberta.  The best cancer centre we have in the province is in my city it's "Tom Baker Cancer Centre".  It is in high demand and due to the large population that must be why we had to wait.  I'm thinking a lot of the reason for the delay might have been becaue she needed to be followed from the surgeon for a bit first because she was fresh post surgery and he probably didn't want to send the referral until she was partially recovered from that.  I just don't understand why they didn't send it right away as the waiting process is so long he could have kept following her in the meantime anyway.  We had asked this and didn't get much response on that.  Also I asked the surgical team about speaking with the cancer centre about moving her up and they said it probably wouldn't happen as there were some people ahead of her needing chemo before they're surgeries which took priority.  Her oncology visit is finally happening today but now she is so weak because she has been in hospital fasting for the past few days while waiting for procedures to try and adjust her tubes/drain bags which they have been messing around with for the past month!! I may have to go see her oncologist on my own sad

She currently has 2 metal stents and 2 drain bags.  They have kept the bags in place because she has control to open and close the drains on these and once they take them away that control will be gone.  It seems her body is not tolerating the clamping.  She always gets symptoms as soon as they clamp her off. Until her body can tolerate that they don't want to take the bags away. It is very obvious that aren't sure what to do themselves they have been poking and prodding on her for quite some time now with no real plan of attack to tell us.  Her surgeon seems to have vanished and never returns her calls. Now we only deal with residents on his team who take forever to get back to us. One of her drain tubes had a leak for the last little while and now it has fallen right out.  She is sitting in hospital once again waiting to get that addressed, fasting and getting weaker and weaker every day.  Once again a situation that could have been avoided if the surgeon would have returned the call and written up the order for the procedure ahead of time.  To be quite frank her care has been totally unacceptable!! There is really no where else to go though and we don't have much choice but to just try and get through it.  The health care system here needs some serious addressing right now.  Her illness came at a bad time.  Things were much better a few years back with the system.

She is starting to get very emotional now and things are terrible, but i'm trying to tell myself that sometimes you have to hit rock bottom before things get better.......right??

thanks for everyones kind words
Janet

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(32 replies, posted in Introductions!)

thanks marion this is the first time ive been on the site and ive found it pretty helpful.  This whole situation im in doesn't seem real sort of like im floating around in a dreamworld if that makes any sense. Thanks for the encouraging words. I'm finding it very difficult to stay hopeful since she is past surgical intervention but i'll try to stay strong

thanks again
Janet

my mom had been ill for quite some time with weakness, bloating\distended belly, burping and gas. Doctors told her she probably had irritable bowel as well as stress related issues.  After quite some time of symptoms persisting she asked for an utltrasound which for some strange reason came up clear.  It was not until her second ultrasound in the emergency department where they had noticed a mass and then sent her for an MRI which confirmed her condition.  She was diagnosed in August with cholangiocarcinoma and had a mass that started in the main bile duct and made it's way into one side of the liver.  They were convinced that it was operable and began preparing her for surgery.  They inserted a tube into her bile ducts with a drain bag clamped off and sent her home to wait for a surgery date.  It was at that point that she began getting sicker and sicker. We were told that this would have to be an explorative surgery as it was the only way to really tell for sure if the tumour was removable. When the surgery day came they opened her up and found two tiny nodules in her lower abdominal cavity. We were told that the cancer was in stage 4 and there was nothing they could do for her surgically. We are now waiting to see an ocologist and it has been quite some time.  She has grown a little bit weaker.  The cancer is mainly on one side of her liver and in the bile duct, but has not spread much further at this point. I am so concerned that during our wait for oncology (which has already been almost 2 months) the cancer might spread.  I am also fearing that they are going to tell us there is nothing they can do for her.  She is weak but can still make her way around on her own.  She showers herself and can prepare small meals for herself as well, but she does vomit if she eats to much or too rich.  Wonder if they will think she is too weak for chemo? Or maybe not eligible at all? She has been referred to palliative care, but I know some patients can stay palliative for years and defy the odds.  She is very positive and is convinced she can beat this. She just turned 60 not even a senior yet!   Is there anyone who has a story similar to mine that can give me some insight?  thanks so much sad