childlikehope
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I was hoping we were alone in getting conflicting statements and the run around. I am sorry your mom and you are having issues with this as well.
Perhaps, it happens at lot in the beginning and once while they are firming up their diagnosis?
We found out my dh had *liver* cancer 11/10. No other cancer reported. The oncologist recommend surgery and sent us up to Atlanta for that and said with surgery dh would be alright. A week later in Atlanta they tell us surgery isn’t an option, we could hope for 2 years but they couldn’t put a date on it and hint they are looking at interheptic CC, but we were set up for radiation. Met that doc and he said we should be getting an appoint for the test (prior to the treatment) the following week. Lots of scans & blood work done in the following week (including a PET). Now they don’t know what kind of cancer and would get another biopsy. A week more… we’re told he has mets on his spine and they thought that conflicted with the CC, but now I think they finally think it truly is CC because radiology called and said they could fit us in the first week in Jan. So Friday… maybe the oncologist here will let us know where we are at now and who knows if that will hold for next week.
It may just be differing doctors conflicting on diagnosis. I know it is stressful. But once you and your mom (and dh and I) get a firm plan in place it will get easier. Hold on. It’s a rollercoaster.
I believe in hoping for the best hope given. Keep asking questions… eventually we’ll nail some answers down.
Good luck & best wishes, Lisa
I belief, help my unbelief.
When you believe, but some part of you still wants a sign… and Teddy gave it to you.
And you gave it to those of us that believe and still look for signs.
Thank you.
I’m glad you have your voice back. Your story really touched me. I’m saddened you lost your strong and beautiful sister, but I’m so heart-glad for you that the two of you had such a bonded loving relationship. I’m sorry that it brings pain now and I hope in time the joy you had together can rise above the pain and loss the void of her leaving brings.
I lost my dad to an 7 year battle of Congestive heart failure and I thought we (brother and sisters) were prepared by then…. yet it surprized us how hard it hit and how badly we struggled through even though we prepared (we thought). But at least we had the time we expected to have and more.
Sometimes I just go out in the breeze and have to celebrate life even with the ache the celebration brings… just to know those lost in my life are still within me alive. I hope the therapy helps you and maybe in time you will be able to celebrate the life of your sister within you. (((hugs)))
Marion, frankly we don’t know what type as yet as all the doctors seem very reluctant to give it a name, we were told ‘unofficially’ in the murky world of maybe… we thinking… Then today the local doc seemed to confirm what the other doctor said it maybe by mentioning the ducts and glandular. Bill won’t go yet for a second opinion. He doesn’t care what they name it… just that they treat it. He says that’s the local docs job… comfort care… nausea meds, pain relief if needed. The big city docs will have the job of fixing him up and he’s hoping the tumors/lesions shrink with SIRT and that will open up some options. (Not that any doctor has said it would open up options for us.)
Realistically, I know on some level my husband’s body is dying even though he’s acting healthy and without resection or transplant he will not be cured and will die from this cancer. But my husband’s spirit is very much alive and fighting… likely why he’s so physically active still. I want to protect that spirit. I’m angry and sad and scared and confused. I’m a mamma bear hovering ’round my wounded mate. As long as his will is alive and fighting and he believes he can make it for some time I’m gonna live in the another murky world…. childlike faith my man can rise up and stay with me. If anyone can… he can.
But I also need to let go of believing I might find a magic cure online somewhere. I can’t fix this for him. I’m a messy gal right now and likely need to tend to business and not make this cancer upstage our whole life together.
Thanks everyone for letting me come and vent, grieve, etc. here.
Edited out location.
Hi Dave,
I just found out about my dh. Heck, I likely said just the wrong thing the first time I opened my mouth. It doesn’t truly matter. What matters is he knows how dear he is to you, just as my husband knows how dear he is to me. Yeah, we might stubble a bit, but dust off and hug him and he’ll get what he needs… his brother at his side. That’s what counts… YOU there.
And don’t forget to laugh when you can…. my dh has said that being able to laugh with us is really good.
Best wishes, Lisa
The doc gave him three meds today to help.
But he told my husband he should go out and have hamburgers… so we tried it and the meds did help and maybe the heavier stuff is better right now.Thanks, Gavin for asking and for sharing. Soup was working for us so that was good advice.
I just wanna ramble a bit… the doc said a few things today that had me a bit muddled. He said transplants were not an option for this cancer because of the adrenal system (edit: went back in notes he actually talked about ‘glandular’ and I thought adrenal) and immune issues. My dh doesn’t have immune issues I’m aware of and I have read on these boards about people getting transplants… so that seemed a bit off. But what really bothered me is the doc acted like he was trying to convey how he’s there to ‘comfort’ us as my husband dies. I do appreciate it. Yet… My husband is alive right now and until he’s confronting death…. I don’t know… it’s just my husband is really acting pretty healthy and it’s just getting to me that everyone seems to act like he’s leaving already. I’m afraid this kind of ‘comfort’ is like my mom giving me wild turkey as a youngin’ to send my cranky butt off to sleep because she didn’t know how to deal with me.
I’d have thought a man would have to at least act sick before people throw their hands up and send him off this way. Just grumbling….
ETA: I think docs was saying my dh has a combo of Cholangiocarcinoma and Hepatocellular from reading online…. type C: an intimate intermingling of hepatocellular and glandular elements (mixed type) Taken from: http://jjco.oxfordjournals.org/content/33/6/283.full
Called: cHCC-CC I guess we’re not cc or icc now. Who know’s what we’ll be tomorrow.
Lainy: . I’ve talked to him about going for a 2nd opinion, but he wants treatment NOW and is afraid of slowing the process. Given what I have read, I believe it is not likely we will find a doctor who will resect him… so I’m with him on getting treatment as quickly as possible. I have been reading… and reading. I hope to be a strong advocate and fighter for him.
Nk… I’m so saddened by your loss. I’m so bonded to my husband I’ve been suffering sympathy pains with him (nausea, burping, etc.).
I can’t even go to the place of imagining life without him and I’m so saddened you live without your soul mate and know that place. I’m sorry this brings such sad memories for you. (((hugs))) if you are comfortable with them.ETA: Went to the Oncologist today and he gave me the ok to give Bill my ‘special’ ginger/turmeric tea. Actually said Ginger tea was a good idea and that’s why I’m posting about it. For those interested I use a muslin tea bag and add 1 teas ginger and 1 teas turmeric (pepper to taste) simmer 10-15 minutes in about 2 cups water. We add 1 teas lemon and 1 teas raw honey. He also gave me the go ahead on the mushrooms (I found out about on these forums). Thanks guys and gals for that one!
Edited out hospital name and location.
