kathyb
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Minnie,
Is it possible for you to talk to someone at the cancer center about this, without your husband around? Maybe you could call his oncologist, or at least leave a message through his secretary. Perhaps there is a social worker/counselor that works with the group that could help you endure even if your husband won’t talk to anyone.
If I remember right, you are now in California with your husband’s relatives? How is he with them? If he’s nice to them, that would just make you feel worse.
Random thoughts:
Does this seem to be more of a problem for men patients than women patients? My father died (at home) this fall after several months of needing constant care. He was always so polite and appreciative of everything that had to be done for him. Lainy’s Teddy probably doesn’t have a mean bone in his body. Do you think it is connected with a person having a faith or not?I love your title, “A Funny Thing Happened on the Way to Heaven.”
You gave great suggestions on how to deal with everything a caregiver or patient has to deal with. Posting on a board brings responses, which we usually want.
slittle,
I highly regard how you put “out of respect for THAT man”. You are a very compassionate person to all who deal with this.
Kathy
I partially agree with you Pam, except should the most important rule for caregivers be “CARE OF THE CAREGIVERS FIRST”? Maybe I’m not understanding what you are saying. A willing care giving role is the most selfless gift one can give to another person. I know there are a lot of people who get thrown into the role and stay angry through the whole process. That wastes so much time, when time is known to be limited.
To me it’s sort of like being a mother. You have to take care of yourself to be a good mom; but if your rule of motherhood is always care for the mother first, what happens to the children.
And yes, I’ve been a caregiver; and the selfish part of me wishes I was the caregiver now and not the patient.
Things that need not be for one person can be things that are very needed for the other.
Lainy, I know you have made all the right decisions for you and Teddy. Problem is, not everyone has a relationship like you and Teddy have.
Margaret,
Being a caregiver is very difficult, and I am sorry you are having a hard time with Tom. I’m seeing this from the “patients” eyes, though. He’s had bile duct cancer for quite awhile now. He’s had problems after problems. He’s lost so much weight. He is not the man he use to be and he knows this better than anyone. The physical toll his body has had to bear would depress anyone. He is probably grieving for the loss of his nephew and his own losses. Does this mean he needs to take antidepressants? I don’t know. Maybe the majority of cancer patients do; and maybe the majority of caregivers do, too.
What was he like before the cancer attacked his body? If he was mean and cranky to you before cc, my thoughts on this would change. I just know my heart would break if my spouse told me he could pack his bags and be gone within the hour, or left me sitting in the dark in my car outside the house for a 1/2 hour.
I do know you’ve been a great support to Tom. You sound like a very strong lady. Please remember I am more understanding of a patient’s bad behavior than others might be. At this point in my life I can feel more of what they feel, rather than what the caregiver feels. It’s so good we have many caregivers on this board who understand what you are going through right now.
My Mayo doctor was first and foremost hoping I would qualify for a transplant. I have a Klatskin tumor. He referred to the transplant as the cure. Unfortunately I did not quality. While I was waiting for insurance approval to have my first appointment at Mayo, my tumor grew over the protocol size. Transplant at Mayo was not a last ditch option. It was the first option researched.
Chemo done!
I saw my oncologist last Wed. but was unable to have chemo because my neutrophils (part of the white blood count) was down to 1.19. They want it to be at least 1.5 for chemo to take place. I’ve also had a couple of evenings where I’ve had a little temp between 100 and 101. Didn’t feel bad, just chilly. My doctor said he just did not want to risk it with me because if I had a problem it would be more trouble with the low count. This really surprised me as it had been two weeks since my last treatment.
Last Friday I had my blood test locally with the plan to have chemo on Monday. Instead of going up, the white count went down a little more. I’ve had the neulasta shot during the regimen, which did bring my count up, but along with it came a not very pleasant side effect. My oncologist suggested we stop chemo now at the end of 7 cycles. He said they actually don’t know if 8 cycles are better than 7 cycles, and it was time to give my body a rest.
The plan is to have an MRI on Dec. 8th to see what happens next. Stable will make me very happy. If it’s not stable, we’ll go from there.
Kathy
Yes! No stent is good!
I don’t understand your oncologist’s statement that there wouldn’t be any condition that would require a visit the Emergency Room. If someone is undergoing chemo treatments, they need to be particularly careful with running a temp. Other members on the board have had blood clots that needed immediate treatment. Sometimes ER visits are necessary and can save lives.
Adrianna,
I am from Iowa and have an inoperable Klatskin tumor. I first went to the University of Iowa Hospital and Clinic in Iowa City. Upon asking, the surgeon there told me they only see 2-3 people a year with bile duct cancer. We then appealed a previous insurance denial to go to Mayo Clinic in Rochester. They see many bile duct cancer patients and that is where I am being treated. I’m sure we do not have a local doctor who has ever had a cc patient, but I have a great local GP who will call Mayo every time I need to see him.
I don’t know what part of the state you live in, and that may make a difference if you go north or south for good care.Be sure to ask how many patients they see with bile duct cancer. If surgery is an option, how many of these surgeries they have previously done.
Kathy
Glad your mom is doing so well.
I originally had plastic stents, but they were changed out every 3 months to avoid problems. It must be done differently in the UK.
