MK...how's your husband doing?

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barkyboys
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   Posted 6/21/2009 5:30 PM (GMT -7)   
I've been thinking about you and hope things  are going better...  At least hope they are managing the pain better. 
 
Love and hugs...
Bev
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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   Posted 6/22/2009 7:32 AM (GMT -7)   
Not at all well, Bev. His pain just gets worse and worse. He had chemo last Thursday and was in so much pain, the dr called radiation and set an appointment for Friday for another mega dose to his hips. Since then he has hardly been able to take more than five to ten steps. He fell once. He had to slither along the floor to get to the bed and luckily his arms were strong enough to pull him up. My daughter and I were both there and helpless to lift him.

I don't know what they will do next. His heart and mind are willing but the body just won't cooperate. He stays in bed and I am carrying his meals to him on a utlility cart. It is a long walk from the kitchen to his bedroom, opposite ends of a loooong ranch house and it has me just about worn out. Last week I had two dr appoints and then chemo and radiation for him which amounted to three trips to Fort Worth 140 miles round trip. Chemo was a 13 hour day. I had help on Saturday to get the house cleaned, then yesterday I spent every minute I could in bed resting myself. Whine, whine! Golden years??? Bah humbug! Hugs MK


postal2
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   Posted 6/22/2009 11:17 AM (GMT -7)   
Oh MK, I am so sorry to hear that he is not doing well and you are so exhausted. I wish I live near, and I would help if I could. I am sending {{{{HUGS}}}} and prayers for you both.

Love,
Gail
  It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.
 
Elisabeth Kubler Ross


Lmmackey
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Date Joined Mar 2005
Total Posts : 316
   Posted 6/22/2009 11:32 AM (GMT -7)   
MK, I'm so sorry to hear about all this going on. This just stinks!! Can you get a visiting nurse in to help? It sounds like that could ease your burden and let you get some rest! I, too, wish I was closer and could help! I will keep you all in my prayers!!

Love,
Lauré
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


gma
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   Posted 6/23/2009 4:44 AM (GMT -7)   
The visiting nurse comes and takes his vital signs and asks him questions. They offered to bathe him if necessary, but of course he doesn't wait THEIR help, they are young women. He has a plastic chair in his shower he can sit in, when he can make it to the shower. He has lost 40 lbs, down to 167 at 6' 1". He is looking mighty thin. I got up an hour ago and fixed his breakfast, now I am headed back to lie down for a little while. Thanks for all your prayers and cares and sympathy. You are the greatest. MK


kathnz
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Date Joined Jul 2003
Total Posts : 135
   Posted 6/23/2009 6:26 AM (GMT -7)   
Hi MK
Just a note to let you know I am thinking about you & your DH. words can't express what you are both going through and my heart reaches out to you both accross the miles from down under.

Would he consent to help with showering if he understood it would help you?

Much love
Kath

gma
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   Posted 6/24/2009 2:43 AM (GMT -7)   
Up early again for his breakfast. His hours have always been screwed up and many of the family are the same up way early and early to bed. OK so it is 4:30 and I am having a coffee so I don't have to make it again. LOL! I will go back to bed, but messing here while I drink.

We have the shower set up with one of those plastic lawn chairs, so he can sit and bathe with a hand held shower head. It is getting in and out that is the real problem and of course he doesn't want to share his skinny body. He told me this morning when I took his breakfast in that he feels glued to the bed, he just cannot get up without a big struggle. I am calling the drs office today to let them know the rads didn't really help and ask if they can suggest something else.

Thanks for all your concern. am doing my best to rest when I can.

Hugs, MK


debbiR
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   Posted 6/24/2009 3:25 AM (GMT -7)   

MK:  I am so sorry to hear that things are not going well. Like everyone else, I wish that I could help but Mo is rather far from Tx.

Have you thought about calling the American Cancer Society and seeing if they have an electric hospital bed? I know that our local ACS has helped others w/ this. If not, see if your insurance might pay for one. This bed might help w/ his pain, being able to get in different positions. Also, what about one of those "slings" that will help lift him in and out of bed as well as the shower? Does he have a wheelchair? Also, I know that either Medicare or Medicaid will pay for someone to come into your home, so many hours a week, to help you clean or cook or do laundry, run errands, whatever you need.

I know that you are both mentally and physically exhausted and this is a lot to think about. Do you have anyone that could make these calls for you? I will be more than glad to do so if you want to share the info I would need.

Lots of prayers and love.

Deb


 


Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 6/24/2009 12:24 PM (GMT -7)   
Deb,

What a wonderful way to reach out! I hope MK will be able to use your help and those services you mention!

Thank God for people like you!

Lauré
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


barkyboys
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Date Joined Jul 2003
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   Posted 6/24/2009 4:41 PM (GMT -7)   
Oh, MK, I'm so sorry. So much on your plate, and it's a mighty big plate. You know, check with his oncology office. They can usually hook you up with a social worker who can help you find all the resources you need for adaptive equipment, people coming in to help, etc.

I know when I had my MIL with us, she didn't want anyone but me to do anything for her, but toward the end, I had to put my foot down and say that someone else was going to have to come in and help as well. She was not comfortable with it, but in the end, I think she liked someone coming in during the day while I was gone (my husband was home, but she didn't want him doing anything, either).

You have to take care of yourself, too, you know.

Take care.

Love and hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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Date Joined Jul 2003
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   Posted 6/26/2009 4:23 AM (GMT -7)   
Up for early breakfast again. This has to be one of the hardest times for me to get up and move so fast after years of leisurely having my coffee and computer time. We have all the extras, Medicare is paying for the electric hospital bed. I bought an electric wheelchair, a bedside potty chair and two rolling walkers. One for him and one for me. I have help every Sat to clean now, she is helping with changing the beds and some laundry. Fortunately we have pretty good retirement so we don't qualify for a lot of the extras through Medicaid. The Home Health Care people told me that Hospice provides lots more in the servics than they can but then he has not been put on hospice care. Yesterday I took him into Fort Worth for lab work and his Zometa which is on a different schedule than the chemos. I drove an hour and a half with him lying on the back seat of the van. Parked and took my walker into the building to leave it and get a wheelchair for him. Pushed him in, got my walker and went up on elevator. I had made prior arrangements for him to go to the only bed on the chemo floor, so I got him there. They did labs and gave him the Zometa and helped him down to the van and we came back home, another hour and a half. On the way we stopped for a hamburger. I came home and went to bed for a rest and fell asleep for a little while. Then it was suppertime. So it goes, each day seems to disappear more quickly than the last one. He shows no sign of getting better pain wise even though he has had two radiations (mega doses) and two full chemos. His pain meds were changed last week to Methadone. Thanks for listening. It does help. I have had my cup of coffee so I am going back to bed to rest a bit more before getting up and dressed. Hugs MK


barkyboys
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Date Joined Jul 2003
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   Posted 6/27/2009 10:03 AM (GMT -7)   
Mk, I'm glad to hear that you've got all the "extras." I don't know how long after radiation bone pain is supposed to improve, but I think I've heard that the Zometa can initially increase the bone pain? Maybe next time you go for chemo, you could have hubby in the wheel chair and have him push your walker in front of him. Sure would be nice if there were somewhere closer than Ft. Worth to have his treatments. You must be exhausted when you get home. How is your stomach holding up to all of this? Make sure you wrap those binders extra tight. Hope you both get some relief soon.

Love and hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 6/29/2009 7:24 AM (GMT -7)   
Oh yes, we use wheelchairs. He has not been out of bed here at home for days, except for a few steps to the bathroom when he can, otherwise he uses the bedside commode. We need to get him into the shower today, he has a chair in there if he can make it. As for my abdominal situation, I have some compresion suits I wear now, that help with the binders holding them in place. Still not enough pick up for the hernia, but it works better than before. I also ride in the electric wheelchair I bought when I don't have to push the utility cart to carry his meals, etc. We'll see what this week brings. My daughter's friend in Cincy told her about Hospice and how they can help me, etc. I told Chris I knew about Hospice's services, but that they were not for someone still receiving treatment, am I right? TTYL need to get breakfast and insulin in me. It is raining here, thank God. It has been a long time and everything is sooo dry. Hugs MK


barkyboys
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Date Joined Jul 2003
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   Posted 6/29/2009 3:12 PM (GMT -7)   
Mk, I think it depends on the goal of the treatment. Hospice is usually called in when there is about a 6-month remaining life expectancy. I think you can be on active treatment, but the goal of the treatment is to relieve pain or symtoms (radiation of the bones, for example, to treat bone pain, or chemo to shrink a tumor that is pressing on a nerve). If the goal of the treatment is to cure the cancer, then hospice would not be appropriate. The oncologist is probably the best person to talk to about future expectations, and sometimes they don't volunteer that information, but have to be asked. The purpose of hospice is to make the "end of life stage" as easy as possible, physically, mentally, and emotionally, not only for the individual, but for the family as well. Perhaps this is Chris's way of asking you if she should be preparing herself for losing her dad? I know she doesn't like to talk about her own cancer, so I don't know how much she asks about her dad's.

Take care, my friend.

Love and hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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Date Joined Jul 2003
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   Posted 7/1/2009 5:37 AM (GMT -7)   
Chris is not the daughter diagnosed with cancer, yet??? They keep trying to find some because of a crazy pap test, but so far, thankfully, all is negative. Yes, she knows what is going on, a friend she works with had a sister diagnosed with BC at the same time I was, it was aggressive and she lost her sister about the time Carolyn was diagnosed. Then this same girl's father went to the doctor within the last year and was suddenly diagnosed with lung cancer, no symtoms like Chuck, and the dr sent him straight to hospice. He lived two weeks. We all know the prognosis is not good, but Chuck is determined he will get out of bed and farm again. He lies there just planning how he can do this and that so he can stand if his bones are gone. Recreational vehichle hoist to hold him up to work on machinery??? A new shop outside the garage, heated and air conditioned so he will be comfortable and close to the house. Oh yes, we'll buy some cattle, too. He plans to get back on his feet even if we are broke. But hope and planning will keep him alive as long as anything except for prayers and good docs. Hugs MK













wwe all know the


barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 7/1/2009 4:24 PM (GMT -7)   
Oh, gosh... of course I know it's Carolyn that has the brca, and I remember Chris's saga with the pap smears, too. I think I told you one time that I had pap tests that came back a little worse each time for quite awhile, and I felt like I was just waiting to have more parts removed... and then they suddenly went to normal and have stayed that way. If Chuck is determined to beat this thing, then whether or not to call in hospice isn't even a question to be asked right now. Nothing, even prayers and good doctors, are more effective than a fighting spirit, as far as I'm concerned. Your story about the farm reminds me of my dad. He was in a car accident (hit by a drunk driver) and one leg was severely crushed. They were able to cobble him back together with replacement parts, pins, steel plates, etc, but of course, he never took a normal step again. Well, he was an avid gardener...vegetables, that is. (He couldn't understand why I messed around with flowers...can't eat them, so what good are they?) His accident was mid-February, and he was in the hospital for weeks... got home at planting time. He couldn't stoop or bend, but he could hobble. So he had a friend till for him, and he took his little crippled self down to the garden with a length of steel pipe that he used as a cane, and then he would drop seeds down the pipe so he could do his planting. Putting in that garden was probably the hardest thing he had ever done, but it's also probably what kept him putting one foot in front of the other. Determination is a powerful thing! I'm glad to hear Chuck's got it!

Love and hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 7/2/2009 7:10 AM (GMT -7)   
Yep sounds like him!!! I like your dad's story and will relate it to Chuck. He is talking buying cattle, tho, and that is really ridiculous. Building a shop and buying a hoist to hold him up while he works is expensive but he is trying to convince me it would add value to the property. Hmmm, let's wait until the round of tests after the first three chemos and 2 rads. Remember four or five years ago they wanted to do a prostate biopsy and he was going to refuse because if they found cancer, he would not do anything anyhow? I got so angry with him I really let him have it. As he told everyone I rolled 46 years of marriage into a 45 minute ass chewing. And I did. LOL He is feeling a little better pain wise until he moves his hips, he must really have a big problem there. He is moving a little more now, so maybe the radiation treatment is working. Did you meet Chris when we met in Cincy? She was there a few times with me, since I had to rely on her driving. Hugs MK

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