It's not good news

Thank you everyone ❤️ I will write again later in more detail .. you know what.... my Dad ate fairly well again last night and again we shared a few laughs. Yes, I still want them to do something .. I desperately want there to be something...but I’m coming to realise that actually... my Dad may well live longer without treatment than he would if he was receiving chemo. I keep reminding myself that the oncologist said the aggressive treatment would make him very ill... his body couldn’t take it. It’s a matter of weighing up how successful chemo etc would be against quality of life. If you’re strong enough then the aggressive approach is the way forward but do I want my already weak Dad ravaged with drugs that will only make him sicker... no... I am really trying to trust what the oncologist has said... he will no longer be getting his psa checked, in a way that might be a release for my Dad. No more worries about those figures.

I keep reminding myself that he’s still having his injections, that the dexamethasone will help him to eat etc... hopefully slow progression down. I suppose what I am struggling with is knowing when, I’m working ... I walked in to work yesterday and thought that I wasn’t able to do it and I did. I teach so I was active all day.. it helped to take my mind off what Is going on. But... I can’t stand the idea of not being with him when.... nobody knows when that will happen but I’m thinking there will be signs and that will be the time I don’t leave his side. I know my Dad and right now, if I’m there all the time he would be stressing about me having time off! I’m just going to go every night, stay over from Friday through to Sunday, I’m going to make him the food he likes and make the time left as happy as is possible.

I’ve written this before... but it really is an emotional roller coaster, he’s so up and down. On one hand, like last night, he was really chatty, on the other hand I’m waiting for that phone call. I’m going to speak to his nurse today and just ask if we will know when the time is drawing near. Currently he’s able to get out of bed, he even drove himself to the shop the other day! He was adamant he was going... I have to look on the bright side and be thankful that he was able to.

I’m still praying for a miracle. All of your prayers are massively appreciated.

Hello again Kathy,
I re-read your posts on this thread and, admittedly, I have been out of the loop on previous threads, but there seems to be a disconnect between what you say your Dad wants to pursue as far as trying further tx and what his MO is telling him. Of course there may be a good reason that the Dr feels he is too weak to endure chemo, but I am wondering if he is making his age the bigger factor. IDK. I had many occasions where I would try to ask Gary's doc about a tx, and he never wanted to hear about it. But your Dad has had so few of the possible options that I, like a couple others here, wonder why. The thing I had to convince my DH was that if he wanted the Dr to consider what he wanted, it would have to come from him. I think the doctors feel that the family advocates will push for tx, whether it is in the patient's best interest of not. Which is probably true quite often. Do you feel like this is the kind of conversation you can have with your Dad without making things worse?
I may be way off base here, and if so, I apologize.
Beth

Kathy77 said...
...and remind people there are many options..

There have been times when I've winced when I've read similar posts. I'm not necessarily talking about your posts in specific—in all honesty, I don't recall seeing your screen name before now—but more generally in other cases when that sweeping general statement probably just wasn't true for the case-at-hand, and probably did (IMHO, based again on personal experiences) more harm than good by giving false hope. Someone just diagnosed with favorable-risk PC does have a lot of treatment choices. It gets more narrow each step/stage after that. Eventually, it gets quite limited. And then eventually, the oncologist helps make the tough call that additional suffering by the patient and ruined "quality" of life from treatments which may result in only nominal life "quantity" are, in the words of the Being Mortal author, barbaric. Here's a passage from Dr Gawande in a message about the oncologists' role:

“Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”

How does one know what the larger aims of a person's life are in the end-stage? Ask. Dr Gawande helps guide the reader through this process—as he does with his own patients—to understand that whenever serious sickness or injury strikes and your body or mind breaks down, the three vital questions are the same (readers will recall these questions being raised throughout as a major theme of the book):

1) What is your understanding of the situation and its potential outcomes?
2) What are your fears and what are your hopes?
3) What are the trade-offs you are willing to make and not willing to make?

Understanding the answers to those questions, the doctor and the family has more clarity about what course of action best serves this understanding?

Post Edited (NKinney) : 4/13/2018 1:41:48 PM (GMT-6)

NKinney, you’re right... for the people with ‘favourable risk pca’ there are many options which is great. Sadly my Dad’s pca was found late, from this forum I can see that G9’s and 10’s can do pretty well ... unfortunately It was already in the bones at diagnosis. A tough diagnosis for sure. I will buy that book, I think I will find it helpful.

142, thank you for your input. Greatly appreciate and I’m very sorry that you’ve had to endure such difficult times. What you have described makes me understand better why Dad isn’t a candidate. There’s no way his body could handle that, his oncologist obviously knows that... I guess it’s kinder not to put him through it. I hope that you continue to make good progress.

On a positive note, once again Dad has eaten well and we have shared a few jokes so it’s been a better day. The nurse came out to see him and was lovely, Dad told her that he thought it ‘strange they haven’t given me another medicine’ ... I had spoken to her beforehand and explained that as a family we are trying to keep his morale up and are reminding him that along with his injections and steroids he’s still being treated... maybe that’s not the approach some might take but it’s best for my Dad to think this way. The nurse told him a story of a man with a PSA of 6000, who’s no longer being treated but is actually coping well ... I think this boosted my Dad up and he’s in a better frame of mind about things.

I am going to try and get a little sleep now. Thanks everyone x

Dear Kathy77,

You have the care, concern, and compassion of all of us here on the website.

Continue to keep spending time with your father, just as you have been doing.

You have now discovered the meaningful "end of life" journey that our loyal sister nicknamed "CELEBRATE LIFE" documented here on this website.

In addition, many of us read the true-life book entitled WHEN BREATH BECOMES AIR ... I recommend that book to you now, as well ... a young doctor suddenly became diagnosed with cancer, and the book is his lasting legacy to the world ... he continued to write until the very end of his life. It captures the meaning of life ... its beginning, its middle, and yes, its end ...

As you continue caring for your father, make sure to take time for yourself ... there's nothing better than a daily walk outside ...

Continue to stay connected to family, friends, and faith, in whatever form that takes for you, Kathy77.

You have the compassion and support of everyone here ...

With caring thoughts,
CYCLONE - Iowa State University