Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 5)

Oh, Moon.

I am so so sorry to read this.

No real suggestions.

Is palliative care the same as hospice?

Mel

Thanks Mel, Susan and everyone. He was shipped up to palliative, after his cross-match, purportedly for blood. This was this morning. I just got in and he has STILL NOT HAD ANY. The palliative doctor had "gone home" when I enquired. Also, the home care team person did not call (told on Monday "latest Thursday") so I tried calling them again and the "leader" said, "Oh, didn't anyone call yet?" Unbelievable.

All the kids showed up with wives, husbands and grandkids. Don was joking away because the people in the beds in his room were all snoring in sync. No one came to see him after the nurse made her notes. No one in five hours. I told her that I would be taking him home tomorrow and she said, "Well you have to get the doctor's PERMISSION for that. I said, "Excuse me, but if I want to bring my husband home, I bring him home." He was told he would be looked after and checked for two days. I wonder when that will start. Emerge refused to take him for blood. So he is feeling really weak. I hated leaving him in that awful place but he needs blood. They will probably say he doesn't, that it is disease progression, and just leave it at that. I am glad I cancelled our trip Monday. Tonight I am raging at the world. I know exactly the garbage that Sue went through - and the garbage that led to our husbands' disease progressing as far as it did before Dx.

ETA Mel...no, it isn't but the terms are often used interchangeably. Hospice is when they think you have less than three months. Palliative is sometimes the same but can include people with a longer prognosis and those for whom no cure is seen as being possible, so they just get whatever meds they need for palliative reasons.

Post Edited (Moonlitnight) : 11/19/2015 11:19:57 PM (GMT-7)

Sleep - I hope you were able to get some, Antonia. Today may be the day pallative does its part or perhaps tomorrow or whenever they see fit. You get my point. You must do what you need to do for Don now. Good to see family rallied round him and he was able to rise to the occasion actually, the fact that he assumed the role many of us do when visitors come no matter who we try to make them feel better by acting better than we feel. (that sounds more complicated than it is)
May your path be smoother this day - a kindness shown would probably go a long way right about now.
Holding you close,
Susan

I want blood - in two ways.

I'm sure before long you'll have another reason to feel the same way re. the blood.
Crappy that you have to go through this - just terrible!

Ok, sigh...you know me, still hoping for a modicum of kindness to come your way.

Love you,
Susan

Thanks Sue. Did I send the link to the article I wrote for Bettercare magazine? http://healthblog.londondrugs.com/dispelling-the-myths-about-prostate-cancer Here it is on their blog. There is a significant reach. If we can just stop ONE guy from having a misdiagnosis due to the belief, "It's OK as it is still under 4.0" which is what Don's doctor believed.

My guy is out tomorrow. I HATED leaving him but no one to look after the dogs and he was insistent and quite excited about tomorrow despite the fact the nice man in the bed next door passed at 11 am. He was very chipper the night before so I am puzzled by this. He is enjoying the break I think...as weird as this sounds, our house can be batty at times. His kids all live municipalities away, except for our daughter and she has had a killer migraine for two days and cannot drive.

I am happy to make our story public. I just cannot believe this 5-week thing. Our palliative doc redeemed himself by telling me he had "learned (his) lesson" about Don's blood and how it drops suddenly. I guess he will be going in weekly now. We are getting home care next week apparently. I guess I have to hide all the IV stuff.

Thank you ladies for propping me up. Your words of comfort hold me tight when I think I am losing it.

xoxoxox

Moonlit,

I assume Don is back home today? having enjoyed his little batty break. My wish is that you got a
chance to take a few deep breaths and center yourself while he was in hospital. I worry that you are
going to take sick from all the stress....and having to educate all the medical people. Crossing my
fingers that the palliative doctor really has learned his "lesson" and follows through with transfusions
for Don.

Just back on the computer after that wicked windstorm that ripped through our area on Tuesday. Lost
power Tuesday afternoon and it was restored today at 5:11 am, I remember because I was so thrilled!
Wednesday morning when I went outside, I could have just lay down in the yard and wept. Terrible
destruction everywhere, power lines down both sides of me, no way to get out as both ways blocked.
Frank can no longer help at all and I was just hopeless. But, later that day, a woman from up the road
arrived at my house and just started working outside with me. We worked all daylight hours Weds,
Thurs, Friday and just hauled the last load away this morning. So, once in a while, an angel appears
just when I needed it the most. She gave me the most generous gift of kindness that I will never forget.

So, Moon, I hope you are gifted with some kindness...it makes all the difference.
Hugs, Lisa

Rather ironic: doctors being SOBs and border guards being nice

Mel

Ah, Moon, thinking of you two.

Antonia glad you have Don home with you . I think I know what you mean about looking frail. I think just being in the hospital somehow does that . I hope you get some help next week for sure. If I was closer I would be there.! Just make sure to get some rest and look after your self. Stress is not good.
Lisa thank heavens for great neighbors! They were my guardian angels last winter as well. Alot of times my driveway was all looked after and it was nice on days of oncologist appointments. I love people who just do instead of that saying if you need help with anything just ask. I am the kind who would never ask for help. It was very hard for Dave to admit he couldn't do the things he always did. XOXO 💙 💙 💙 Sue

Antonia, Bless those custom agents who showed you such kindness, it's heartening to know that in the midst of your most awful times there are kind loving people who see your heart and instinctively reach out in that moment to hold you up. You deserve that and more.
You and Don have support here and I know you believe that. I know you believe the good thoughts, prayers and love that we send to you both are a blessing and bring comfort.
Holding you close,
Susan xx

My husband died last Saturday and is finally rid of the horrible pain he endured. He fought long and hard, but his body just could not take any more.

I wish everyone here the best of what life has to offer. You are all amazing.

Love,
Cathy “enjoylife”

I am sorry to hear this Cathy. Thoughts and prayers with you during this time, please stop by now and then to let us know how you are doing.