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home, sweet home

9 years 5 months ago #36148 by clueless
Yes, check with your doctor before using the Marihuana. It's likely not good to combine with some pain meds either.

George is only taking one antibiotic now and we cleared that. No other meds of any kind.

Had a few shavings of it before breakfast (just a little goes a long way) - eating easy over egg mushed with butter and Benefiber and half a strip of very thin, very, very crumbly bacon.

Between breakfast and dinner we will try for 2 clinical strength Ensure and I will pick up some ice cream today and thin it with melted icecream.

Also he drinks a couple tall glasses of Gatoraid with benefiber mixed in in the course of a day.

Tonight we'll attack some grilled Salmon mushed with lemon butter and soft cooked green beans (mushed) and mashed potatoes with melted cheese.

Sticking with very soft foods I can thin out with caloric stuff and invisible fiber. We need to get the swallowing stronger gradually before advancing to firmer foods.

He is stronger yet today, sitting upright without leaning on anything, getting up a lot faster, walking smoother. Well rested and his attitude is just great.

I just knew he needed to get home - now he wants his life back and he knows what to do to get it.

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9 years 5 months ago #36145 by Patricia
Just a note....*** please do not try this Marijuana recipe if you are taking any form of platinum drugs...cisplatin or carboplatin..it interacts.

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9 years 5 months ago #36141 by mmc
Going to need to change your screen name from clueless to "expert" or "Clue-full" or something. You and George sure have been through a lot, learned a lot--the hard way.

So sorry that he such a difficult time, which was of course also difficult for you.

Glad you pushed for release from the hospital because it sure sounds like it made all the difference in the world!

Don't forget to take care of yourself as well!

That's easy to forget about with so much going on.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 5 months ago #36140 by clueless
Well, you know, after the third operation he became despondend. And stubborn. Refused to eat or drink, refused any therapy. He was going downhill. He was fluctuating between anger and depression.

So, when all medical issues were finally solved, I pushed to leave the hospital before eating and movement were accomplished (usually a condition for release).

After having tubes down his throat for weeks, he all but lost his voice and his swallowing reflex is pretty shot. So he was aspirating food.

I had to draw a line in the sand at this point - he was conviced he would never get out of there and quit trying.

We rode home in a wheelchair ambulance and the ride was something I will never forget. He was extremely uncomfortable in the wheelchair and just sat staring at the floor for most of the trip. Then I pointed out Roseburg to him and he looked out the window and commented on how we got the first Llama there. As we got more and more into familiar areas he started taking part and commenting and his face got more and more lively and by the time we got home he was all excited, wheelchair pains forgotten.

And then I knew that getting out of dodge was the right decision. And going home instead of rehab was the right decision. Not saying this is generally true, but for him it certainly was.

We have had one whole day at home now. He is sleeping through the night now, but I get up and have him turn from side to side every 3 hours or so. Making sure he is not ending up on his sore, sore backside and no other areas get too much continued pressure. Plus we have memory foam matresses...

Yesterday he had 2 ensure thinned with whole milk (because he swallows small sips of thin liquids better than thicker things). In the evening he took the first real food he has had in 5 weeks - mashed potatoes thinned with whipping cream and gravy made with extra butter. Of course his stomach is the size of a pea now, but he ate a number of spoonfuls - and he liked it!!!! No problem swallowing.

Now, we live in Oregon and just before his departure to the hospital I thought to get a medical Marihuana licence for him, just in case.

I also bought some before leaving. Yesterday before dinner I made a concoction of finely ground Marihuana, butter and a very decadent, sweet hot chocolate mix. Mixed it all up, spread it flat on a piece of wax paper and froze it. Then I gave him a tea-spoon of fine shavings of it. Went down fine and 45 minutes later I served his potatoes.

Obviously it did work to get his appetite going. But he was also more comfortable sitting, his muscles and backside stopped hurting.

So I will use this as appetizer until he has his appetite back all the way. People were right, it works, and whatever works is fine by me.

So, all in all, the first day was a great success. He moves of his own volition from chair to chair to be in different positions and locations, of course with me watching so he doesn't fall and using his walker. He drinks. He eats. YESSSS!

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9 years 5 months ago #36138 by Flamenco.
I have been following your posts and was so glad to hear that hubby is finally home, but also that the path results were good. Please give him best wishes to regain his life.

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9 years 5 months ago #36130 by Cynthia
Glad to see you home. Many of us have horror stories, our very own war stories now you two have your own to tell.

Give you husband a message for me. Heal quickly, be kind to you and himself. When you have been through all of this you need to heal physically and emotionally let time do its job. Coming out of the hospital if you have had complications can be like the scene in the war movie when the hero crawls out of the swamp covered in blood and dirt, you body has been to war and now you need r and r. Build it back slowly only push far enough to go forward but slowly. Rest when you are tired and if you feel like doing something do it. Your apatite will return most of us who lose after RC gain it back. If you have a setback treat it as such and bull through it and start over again. And that I hope he knows he is a very, very luck man to have a wife who loves him so much that she has been with him fighting every step of the way.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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