asher47
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Agh! Sandy…Im so very sorry. I have not been on since September 11 when I responded to your first post. I went to find what you wrote recently and had that gut wrenching feeling as soon as I found your posts. It happened too quickly. I cannot control my tears, this is a sad sad situation. No words will make it better. Unfair is right. But Sandy, you and your family will bounce back. And your brother will be so proud of you. I will be praying for you. You are not alone! Ashlea
Dearest Amy,
I followed your story and one thing I know–you made sure you soaked up every minute of time you had with your mom! Life was just too fragile for you to not. Hold on to those good memories of her. She was wonderful wasn’t she. When you feel sad, allow yourself to really feel that emotion. I pray family and friends would be a source of strength during this most difficult time.
Blessings
AshleaDear Sandy,
Thank you for coming here and asking questions. You do need answers. Keep pushing the Dr.’s for more information, never give up. I am so sorry to hear how quickly all of this came up. This disease is unpredictable and it is different for everyone. Your family is in my prayers. You sound like a wonderful sister that would do anything for her brother! This is a difficult journey and I am sorry you have to endure it.
Warm thoughts and prayers coming your way,
Ashlea
Hello MelissaAnn,
Welcome! These people here are wonderful and I’m sure you will be welcomed with a bevy of support and information. This is a cruel disease and it sucks to have to join this club, but there was nothing like having these experts to bounce things off of in my most difficult of days. Kris is correct in suggesting Ensure or any type of protein shake to ensure she is getting her caloric intake. Anything like popsicles, smoothies might be more attractive to her. You can always throw some protein powder into a shake with flax or anything else that would be healthy for her.
Regarding the sleeping, Kris is also right in that your grandmother has a lot on her mind and perhaps it is anxiety or depression that is keeping her awake. I would definitely speak to her doctor to see what she needs to help her sleep.
As far as her diagnosis, many people on this site would recommend a second, even third opinion! 6 months to 2 years is quite the range. Have they talked about treatment options with your grandmother? Is there a possibility of operating?
This site is wonderful. I suggest you read, read, read and you will find lots of knowledge on how to best care for your grandmother at this time. Feel free to ask all the questions you need!
Blessings,
Ashlea
Hello everyone,
Wow!! After a long day with my daddy it is nice to come home and read all your lovely posts! I feel so much better now. Your support and kind words are so special to me. In my most desperate moment I knew that my family here would be able to relate to my situation. Part of me is still scared, but I do have more peace. I was able to get alone with my dad finally and get some things out that I really needed to say. He was somewhat responsive, and most important is that he can hear it. He is rather agitated, which is really difficult for me because there really is nothing I can do to make things better. I want to make him as comfortable as possible in this time but I’m not sure how. His confusion is also difficult to watch, because then he gets frustrated when he doesn’t understand. Sometimes it is really cute, we all revert to little children when our time is near. But while he does cute things, and funny things it still makes me sad. One day at a time I guess…I just need strength from the Lord above. And it helps to know that I am not alone, that people have gone through it, and there really is something so beautiful about death. This is the most difficult time of my life. I can’t believe how many life lessons I’m learning. Sometimes I wish God didn’t think I was so strong. I don’t know…
Love, Ashlea
hehehe That’s cute!! Good to know. Teddy for teddy bear obviously? Sounds like such a strong strong man!
Next week my dad goes into Hospice. You expect it, but then when it actually happens it’s difficult to process. Dad said on the phone he didn’t think that he was going to make it much longer. Heartbreaking. He has lost his hearing, another side effect of radiation or liver failure, who knows? The last 2 weeks they have sucked something like 40 litres of fluid out of him. They are putting in a permanent suction. We got the news back from the scan on Monday. Tuesday was my birthday so even when I asked my mom about it she didn’t want to tell me for fear that it would upset me too much? Naw, upset me? Im a steel doll these days. I will be visiting him very soon! Smiles through tears for my cholangiocarcinoma family!
Thank you everybody
Thank you Marion….I’ll figure out what kind and get back to you.
Lainy, I think you are right. Was your hubby’s name Ted? My dad’s name is Ted. Anyways, I think it is a result of the radiation. It’s interesting you say the spots showed up on his back when the radiation was done to the front. My father’s radiation was done in his neck where there is a crack as a result of bone mets. and the spots are all over his chest and stomach. Not sure if hes experienced itching from it. He also mentioned something about a large vein popping out on his stomach and after doing some reading i came across varicose veins. It went on to say that one symptom of liver failing is “bleeding of the varicose veins at the lower end of the esophagus and in the stomach lining.” I dont want to worry about it too much, just wait to see if the radiation has exacerbated his symptoms.
It’s really difficult keeping track of Dad’s meds, because they keep changing his regimen daily.
The latest update is a little more than we bargained for. The cancer is now in his lungs, and his bones (pelvis, spine, 2 ribs, skull, shoulder). As a result, he has a broken rib and is experiencing so much pain! He is having trouble breathing, I don’t know if this is a result of the lung cancer, the broken rib? His spleen is enlarged which doesn’t seem to be a good thing. I’m not sure really what that means. They are getting him hospice at home now. Hospital bed, help in the morning and night so that is great progress.
I don’t really know why I am posting? You expect that this monster will spread and it does. My hope has been that it would stay contained in the liver and if it had to spread JUST NOT THE BONES!! I don’t know what to expect now. It seems as though the cancer’s movement doubles every 3 months. From the tumor in the liver to mets all over the liver, to the lungs, now to the bones, and each time the tumors grow double in size.
He is on the waitlist for hospice and I am assuming that they will move him in when they see he needs too, just as they agreed to the hospital bed and all that. I just want his pain to be under control. Does anyone know if you can have intravenous at home?
Dearest Pam,
I am sorry to hear of your mother’s passing. You really have been a great encouragement to me through your journey. I am sure you are feeling a lot of grief, though you know your dear mom is in a better place with her King. But you have lost your mother and there is no replacing her. I hope things get better with time. My thoughts and prayers are with you at this time!
Love and hugs,
Ashlea
Hello Kris,
I’m right with ya on this one….BLAH!! You are one real person and I found myself giggling at somethin’ sassy you said just a couple days ago!! You have a wonderful sense of humor and I am sure that is what has kept you going and will continue. But it’s hard to ignore such bad news when it hits ya smack in the face! I hope that they can figure out a different chemo regimen that will help! I am glad you are feeling and looking great! Although it adds to the confusion of this recent news, I don’t think I’ve read a complaint from you yet so we of course are here for you to yell, scream, cry all you want!
Hugs,
Ashlea
Hi Marc,
I am sorry to hear of your mother’s passing. You are right, she is at peace now. This is not to say you will not feel the sting of this. Feel free to stick with us through your grieving, you may feel you want to talk still. I hope that you find that every day is a little bit easier to cope. Be kind to yourself.
Many hugs,
Ashlea
Oh Lainy, what a story! Thank you for sharing that with me….
And of course thank you Patsy and Tess for your kind words and support!
Yes, great idea Marion…my dad’s regimen changed slightly, but I will be sure to get a list of meds when I am down to see him. I will report back…
Yessss! My daddy has been experiencing this soooo much since his diagnosis in October. Same thing, he has to have 2 or 3 shirts on hand because it is that bad. I also tried searching “night sweats” because I wasnt sure if this was common and wanted to know what to advise for my dad but didn’t get many hits. I did come across chills, fever but nothing to the extent of severe night sweats. I think too it has a lot to do with his medications….
