jaynus
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jaynusMember
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
JanetMarch 9, 2011 at 10:45 pm in reply to: Any suggestions…brother is to sick for treatment…what now? #48473jaynusMemberAlglog, 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!
JanetjaynusMemberHe looks very good. So nice to see!
jaynusMemberI 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
JanetjaynusMemberthat 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
jaynusMemberJennifer 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
jaynusMemberHas 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
jaynusMemberthankyou 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.
November 26, 2010 at 7:07 pm in reply to: Weakness and lack of appetite – how do you get back your strength? #20849jaynusMemberHi 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.
JanetjaynusMemberMy 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
JanetjaynusMemberAndie 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
JanetjaynusMemberAndrea 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
JanetjaynusMemberYes 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
JanetjaynusMemberHi 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
jaynusMemberHi 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!
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 -
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