Guidance Needed – 81yr old Dad.
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Wow Dianne,
I just came across these posts. It reminds me of so many situations I encountered less than two years ago. Events going on, traffic congestion, etc. but we just keep going and do what we have to do don’t we? I had a similar situation with a doctor (actually a nurse practitioner I found out later) in the ER at one point and later on I went in and filed a complaint. I don’t know if it did any good, but it made me feel better to let my feelings be known. No one, patient or care giver deserves to be treated like that. We are under enough stress and trying to deal with so much as it is and then to be blasted like that is just not right. These are supposed to be educated, professional people and they should know better than to treat people like that. I hope things improve for your Dad in the next few days.
Darla
Thank you so much Lainy and Marion, always a great comfort to see your words of support.
Lainy, all the doctors and nurses have told us that Gemicitabine is a well tolerated chemo drug, with only minimal side effects. It’s the Cisplatine that is known to cause the worst of the side effects. The Oncologist at Princes Margaret who is leading things for my Dad said, that he’s read the German study on Gem/Cis and is not convinced that you have to have both in order to get results. He’s seen results from just he Gemicitabine.
As of yesterday, the ultra sound has come back, showing no blockage. YAY! But his levels had still gone up, so the hospitalist spoke to the kidney specialist, who said to give Dad a large does of Lasix a potent diuretic (water pill) to “jump start” the kidney’s. The hospitalist seems to think that the kidney specialist was pretty sure this would do the trick, but was cautious to say that it would work for sure… understandable.
So in the mean time, I’ve finally spoken to the radiologist at Princess Margaret in Toronto. He told me that since Dad is in the hospital and that they are keeping him there, he can’t do any treatments on him until he is ok/out of the hospital. Ok, I understand. However he said as soon as we know he’s getting out, call and find out where he is and let them know that I’m bringing him, in order for him to do measurements. He’s ready to see him on the spot!!!!
The G20 Summit is causing major problems here in Toronto, ON. Parking is at a premium on regular days, but will be astronomical now. Princess Margaret Hospital is right down in the middle of it all, and only a few blocks away from the Ontario Parliament, which I’m sure will be congested with protesters.
So lets hope the Lasix does what we hope it will do. I don’t want to go in today, unless they have some thing good to tell us… even if it’s just that he’s urinating like crazy!
Take care, and thank you for getting me over this bump.
Tomorrow is another day!
Dianne…..Hang in there. This is a very stressful time. I don’t think that any type of treatment can begin until your Dad’s situation improves. When will you receive the ultra sound results?
I am thinking of you and sending much love your way,
MarionDianne, we are kind of in the same boat. I have known from the beginning what to expect. I have made many friends on here and have felt such a reward in trying to help others for 4 years now. I am a CC Caretaker and I know too much and yet I am totally baffled by Teddy. He looks too god, we must be making this all up. Then I have to stop and remind myself what is going on inside of him. Tonight he just simply said, “I wish I had more time”, and I wanted to die for him. Here we sit knowing nothing can be done. 4 doctors have agreed. It can’t be, because he looks so good. I see him slowing down and with all I know I am frustrated and yes a little scared myself as I know what is to come. Each day is harder than the last as each day puts us closer to the end even if it is a year away. But I do know that he has lived 5 years on borrowed time. I do know we have tried our best and I know I am in the right place on this Board.
So, I totally understand what you are going through and yes, tomorrow will be a better day.I just wanted to curl up in a ball in a corner some where when that Dr. blasted me… and then I get all mad and picked my self up and think that this is not it, it can’t be, Dad’s talking, walking, thinking! These last few weeks have not been quality time at all.
I have to push on for him… the radiologist at Princess Margaret left me a message to call him back in the morning. I feel like if they could just get some radiation on this damn thing, it could knock it back just enough to get some chemo into him.
I know I have to be realistic, but they haven’t given him a chance or the tools to fight… it’s taken 4
I’m so sorry Lainy… I can’t believe there is nothing more they can do for Teddy… my heart goes out to you… many hugs go out to you.
Dianne, mmmmm not sure what to say. Teddy is going to be 78 and has taken a turn downwards which we had been expecting. He is a 5 year survivor of a Whipple. The doctors said there is nothing they can do anymore because of the location of the cancer and he said he has been through enough. He wants quality time now and that is how we are planning. He wants to know everything so everything is discussed in front of him, he is in on decisions and I am straight forward about it all as he deserves to know what is happening to him. It kind of sounds like everyone is all over the place when they need to concentrate on him. Something sure doesn’t sound right and you have every right to get to what it is. And this is why a lot of people are worried about Health Care in the USA. Wish I could be of some help but I do agree with what you have done and how you are feeling.
Some of you are already familiar with my Dad, he’s been stented a number of times with two plastic and one metal stent and he wants to do chemo.
We’ve been trying the get going on the chemo sessions but have had nothing but problems with the stent blocking and now more recently, the tumour has grown (doubled in size) and has grown through the metal stent (even though we’ve been told it was impenetrable).
Dad’s been in hospital for over two weeks now, they’ve put an external drain in through the ribs, cut into the metal stent and feed it through, into the bile duct. It’s a special tube that works sort of like a garden soaker hose, allowing bile to seep into the body. They just replaced it this morning with a bigger diameter hose. He’s been on antibiotic ever since and has not had a fever for more than a week. Although his blood has dropped by 10 over night to 78, and is now get a blood transfusion.
Now the Dr. tells us that his kidney’s levels are off and suspect something else is going on. His feet are swollen, and has not been able to urinate for the last 24hrs, although he did this morning. They put a catheter back in, but not much is coming out even after putting more fluids into him. They also sent him for an ultra sound before I left and we are now waiting to hear the results.
Dad’s not eating and drinking much, in fact everything tastes horrible to him. He’s only eaten today because I told him he has to eat and spoon feed it to him. Part of the problem is that he doesn’t want the nurses to wipe his bum and doesn’t want to bother them. UGH!!! Also told him he has to drink lots of water and he has since I’ve been getting after him.
Trying to get the oncology team here at Oshawa General to get going on arranging IG-IMRT radiation treatment at Princess Margaret Hospital in Toronto, but nothing seems to be happening. The doctors here sent me to Toronto to see the radiologist last Thursday(right in the middle of all the Summit stuff going on), with all of Dad’s latests imaging, and said he’s thinks it’s need now too, but then he says he needs the Oncology team in Oshawa to tell him what they want to do, such as if they want to wait to see if he’s to get another chemo session in or not.
Ugh! Please somebody do something!!!
To add insult to injury, the hospitalist (he’s like a GP) came over to me while I was standing in the hallway a few hours ago and chewed me out! He said that we shouldn’t be discussing what’s going on and asking questions in front of my Dad, that he’s got enough to deal with. That if it was his Dad he wouldn’t blah blah…. my Dad still has his faculties about him and wants to know what’s going on, I’ve even asked him. And yet the day before he tells me that he can’t talk to me everyday, he doesn’t have time to talk to every family member.
Anyone have any insight and or words of encouragement, please send them this way…
Thanks Dianne
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