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I'm numb they actually said hospice

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

      So everything just came crashing down after the radiation oncologist recommended chemo the oncologist just made my heart break . The oncologist told my dad sure he could do chemo but cause my dad is prone to infection's with his urostomy bag it wouldn't be much of a life . He told my dad he can't be on antibiotics and chemo cause it would kill him in 6 hours . He said my dad should do radiation but with the risk to my dad's small bowl cause he has had radiation before that could lead to more trouble  Then he went on to explain to my dad he could do nothing and contact hospice which is shocking to me . I wasn't in there cause of covid but he told my dad hospice doesn't mean he's dying which I know to be a lie . Now my dad is still doing good his tumor did grow from 33 by 37 mm to 46 by 57 mm in two months and my dad's last chemo folfox didn't work they say . Dad does also have both bags and neurofibromatosis which makes it complicated but I am just in shock and heartbroken . I am just wondering and looking for opinions does this sound crazy to everyone else to ? My dad doesn't even have no know cancer anywhere else his lungs and liver are clear I just don't understand I already called the oncologist for explaination waiting for a call back but just looking for other opinions on this . I mean can people with a urostomy bag and colostomy bag just not have chemo ? I don't know just hoping for some help this is becoming worse and worse . 

Trubrit's picture
Trubrit
Posts: 5423
Joined: Jan 2013

Hospice does not always mean you are dying, it is a place where they can make a person with a chronic illness, comfortable. My good friend is a Hospice nurse, and while it is true, many patients pass while in their care, there are those who actually recover enough to live life. 

Saying that, I would be lying if I said that your dad's situation does sound discouraging, and I understand your shock.  It is never a bad idea to get second, third opinions, but there does come a time when you have to reconcile yourself to the fact that he may not live as long as you wish for him. 

I am sure you are not bombarding your dad or pushing him to do more than he is comfortable. You are a good son, being so concerned an reaching out for help. He must be so proud to know he has raised such a good man. 

You are both in my thoughts. 

Tru

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Have you gotten a second opinion?

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

We are going to I already called University of Michigan my dad is still a patient there and they agreed to look over everything . 

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Good. It is really important to make sure you are getting good information that unconnected doctors agree on.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

I agree trying to get my dad to change everything to u of m cause this same doctors also told us he was for sure stage 4 and it spread then realized it was neurofibromatios one biopsy they did on the wrong spot . If I remember right you have been on chemo a while ever had any infections ? If so what did they do then ? Cause my step mom and dad are taking this as my dad can't have chemo cause he does get alot of UTI's cause people with urostomy bags have alot of bacteria in there urine . My dad is usually always on a low dose antibiotics cause of it which he has to stop to do chemo . 

abita's picture
abita
Posts: 1014
Joined: Dec 2017

I have never had a bag, so no infections. The only antibiotic I was on was for the rash my drug gives me. But I stopped because I don'tlike taking them.. Also, I chipped a tooth, so if I want to get that fixed, I will need to take an antibiotic. I have been on chemo for years.

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

I am so sorry to hear about your dads situation. Just a week ago we got similar news so I know how hard it is, how hard, how much you want to cry about this situation. It gets better, I am sure  you will find hope again. 

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Thank you all for the kind words just got a call from the oncologist nurse saying it was my dad and step mom wanted to know about hospice . Saying my dad was concerned about the side effects of treatment so i guess to them chemo patients have no right to worry about side effects and want to know how a oncologist can help with them . So they told my dad he has 6 months to live without treatment and agreed to hospice even made a appointment with hospice for us . My dad and step mom says the oncologist brought it up I literally don't know whats even going on no more . Oncologist nurse even said the oncologist offered treatment and he wouldn't have offered it unless there was a reasonable shot it will work . Yet they say my dad and step mom want hospice but my dad and step mom say the oncologist brought it up hope seems so far away right now tueffel.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I am so sorry for whats happening now, I know this has been such a roller coaster for you and your dad. From what you wrote it seems like a good idea to try and have a talk with your dad and step mom, maybe even just your dad by himself and try and get to the bottom of what he wants. I used to do home health for hospice and I can attest to the fact that while most people do pass while in hospice care, some people get off and some people make it years and years; your dad may just be at the point where he doesnt want to be uncomfortable anymore, and that make sense, he has been through it for sure! Maybe palliative care would be more appropriate? I think another opinion from another hospital is a great idea once you really know where your dad stands on all of this. Ive tried to send you a message before but I think you had that function turned off, I can try again but feel free to reach out if you want. 

 

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

I agree. It seems there is a communication or missunderstanding issue between what is given to you and what they are talking about. So yeah the best thing that you sit down with your dad and discuss what he wants in treatment, in life etc. Maybe he is indeed afraid of the side effects, maybe he thinks he cant win anymore. Whatever it is but you need to talk, be honest to each other. This way you can find out what really happens, what your dad wants and then you can plan on what to do next. Maybe tjis talk will be challenging but it is necessary.

I wish you good luck!

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

I have since the appointment and I plan to again tonight I don't know why he would lie to me and I don't think he is . But I don't know why the oncologist would lie either so idk really nothing else I can do until biopsy is done just have to accept not knowing and having no hope for now . 

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