Internal bleeding, is this related?
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alihutch…..Your kindness and caring for your partner and his father is admirable.
Although disappointing and worrisome at best, patients have the right to privacy. As your partner’s father is considered competent to control his healthcare decisions the physician must abide by HIPAA rulings.
The below link allows for a general overview:
http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/sharing-family-friends.pdfNavigating healthcare issues from afar is especially difficult in that information passed on from a family member (in this case the patient’s wife) can be misleading or misunderstood. The best you can hope for is for the patient to grant permission to the physician for release of information to your partner however; don’t be too disappointed if the request is denied. In general, parents don’t like to relinquish power to their children. This is compounded by the fact that already the patient lost control of his/her body due to the cancer.
If indeed permission is granted then prior to speaking with the physician it is best to become an educated advocate by learning as much as possible about this cancer.
This biliary book can be of great help:
http://cholangiocarcinoma.org/news/foundation-resources/
and this as well:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/I feel for you and your partner. You so much want to be of help, but are hindered by the fact that you cannot be there in person with his father.
Hugs,
MarionThe onc needs Rob’s parents to ask him to refer him for investigation….. Rob has explained all this to his Mum and when she goes to see his Dad tomorrow, she will talk to him. If he doesn’t want to ask then it won’t happen and at that point we can do nothing.
Ali, for what ever my 2 scents is worth, sadly, I would ask the Doctor what he would do if this man was HIS Dad. You want him treated like he would treat his own. My Teddy always used to ask the ONC, What would you do if I was your Dad”. It works, T was 78 when he “relocated”. I would guess that there is not much more the ONC can do. The most important thing would be is to keep him comfortable. How blessed the family is to have him with them for so long. A talk with the ONC would convey what the family needs to do at this point. HUGS to you and to them.
Will see that we can do.
So, further update, which isn’t good really.
My partner (Rob) has spoken to the oncologist who’s spoken to the regional hospital his Dad is currently in. It seems that the hospital have decided not to investigate because of his age and are sending him back to the local hospital
The only way he will be seen is if his parents call the oncologist’s sec and ask for him to be seen by the guy who did his stents in Perth 3 week ago. (who didn’t notice anything amiss when his did them)
His Dad is annoyed that Rob has been interfering and speaking to the doctors.
His Mum will speak to him tomorrow when he’s back in the local hospital and see what they want to do. Rob has suggested that she call their health insurance company and will see what they say.
We’re stuck now as it is up to his parents as fully functioning adults. I despair……Well, the writing is on the wall, you two just have to meet. You know how fantastic it is to meet a member of the family!
Thanks for that Ali, I so hope that they find out what is going on with this ASAP! And as to them being on the point of discharging him back to the local hospital again, big GRRR to that!
And as to trips and food Lainy, Ali is so right, Glasgow is only 80 miles or so from here so I could be there in about 80 minutes or so. 90 if the traffic is bad!!
Gavin, I missed your post before…thank you. They were on the point of discharging him back to his small local hospital to see if it stopped……(!)
Ali, I can dream about the trip and we would need to include my son from another Mum, Gavin!!!
You don’t know him very well yet but just write about food. Gav is passionate about food. I always give him my menus when having my kids and Grandkids over!Thanks Lainy. It’s so much harder because he’s not my Dad. There was only Mum and me, so I could just leap into action. My partner has a Mum and 2 brothers, so it’s not so direct and I think that he worries about stepping on toes. They are also poor communicators and my partner is conflict averse….
And yes, you should travel the world and if you come to Glasgow we could have a very good time!
PS – Lainy, I can see you are logged in right now and know it is early over your way…….
Breakfast time, sorry!!
Hi Ali,
Good for you on getting the Onc;s secretary to kick some butt as it were with the hospital and get things moving. People should not just have to sit back and wait etc and the hosp should most definitely be trying to find out exactly what is going on with things and not just assuming something.
As an extra, when I had my ulcer I had blood in my stools. Actually it was much worse than that and without getting too graphic here there was a ton of blood coming out of both ends. This came on very very quickly to say the least, a matter or hours but blood in stools etc should always be investigated.
Best wishes,
Gavin
GOOD GIRL, Ali. YEA! Sorry if I sounded harsh but I myself was so frustrated for you and his Dad! No matter the age of a patient who is any hospital or Doctor to throw their arms up and say no treatment! This man could live to be 100! Glad you did not take me the wrong way. It was my frustration! We have an OLD saying here that, “The squeaky wheel is the one heard”. And you did it! Waiting now to hear the results. Sometimes I wish I had a private plane and that I would go all over the world advocating. When I got to you, we would just have a good time!!!!
Hi Lainy,
Agree with you Lainy ‘wait for what’ is what I’ve been saying…….and finally I got my partner to call some more (I wish I’d been calmer, but this pushes no end of buttons with me, I had years of trying to make hospitals realise that my Mum was a bright functioning human being who just had a worn out body)
Seems the hospital have just decided that it must have spread to his blood vessels without looking and were using a scan from May and not the most recent one because it was done in another hospital. (all his scans have shown no growth in the tumour)
He then called the oncology consultant’s secretary, who is a formidable woman. She said that they’d not heard from the hospital looking after him and said she reckoned that they’d looked at his date of birth and not bothered….. and to leave it with her….She has now called the docs looking after him and the consultant will be speaking to them on the morning. Time difference means that my partner was speaking to them at the end of their day, hence the wait. I think I’ll suggest that he gets up in the night our time to call again.
So I’m relieved that someone now seems to be on the case and I hope tomorrow will bring some more action. The hospital he’s in were on the point of sending him back to his local hospital……I’m furious.
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