Can we have a forum for "older" people with bc?
Comments
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Well, it is really pretty ( fairly cool ) out today. By tomorrow likely will be raining. I do feel like we are getting weather that is a bit more normal for April. We get what we get and as long as it is not something really difficult on people ( like tornadoes, or earthquakes or erupting volcano's ) I think I just should be happy.
Chevy -- I have to admit that I have followed Carole's adventures with the bad foot too and have forgotten if the problem is in the front of the foot, the back or the arch area. I just try too hard I think to keep too many facts in my head I guess -- well, that does sound good even to me. I'm sure with how active Carole is that all any of us want, is for her to have great success with this foot fix. No one is anxious for the most part ( especially at our age ) to go get 'cut' on anywhere so I would imagine it was far rougher than she made it sound when she talked about it.
Mommarch, hope you will try the melatonin Sweet Hope mentioned. Whatever it takes to try and get us on the best level --- especially when we need ( no choice ) to take some of the heavy-duty drugs we sometimes need. Just hoping you soon get it all under control.
Chevy -- how close does your friend live to where your located. I too hope she is able to go home and BE home after she is done at rehab. Other than a Dr.'s visit or something like that --- she may be able to do most of what she needs to do at home just by being patient. Knowing I'm talking about something that I did not have to worry over as I had my Dh at home when I came home from my stroke. Just feeling like if the rehab can get her going with the skills that will be highly important -- like bathing, teeth, etc. a lot of what she might need to deal with can be handled by taking as much time as she needs to accomplish it.
I often have never been a truly patient soul, and since Dh was home --- I didn't have to concern myself too much, but I do think if you have some luxury of time, you may be able to find out ( trial and error ) really good ways of doing things for yourself. Here's hoping !!!
Anyway, I'll be checking in later.....see you then.
Blessings
Jackie
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Happy Birthday Cammi....I think of you so often and miss your posts. I hope you have a very special day!
Hi back to you, Chevy!
Thinking of Carol and hoping that all goes well today.
Mommarch....your body is telling you that it needs rest. Do what you need to do! Hugs to you! Keep checking in to let us know how it is going!
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Hi gals! Just got back from my Mother's Day Lunch with DD and Rosie.... It was so fun....! We met at Appleby's, and then I stopped and bought 4 more tomato plants at Home Depot.... Got THEM in the pots, so I should be done planting....
Jackie, she lives far... like 10 miles, but I can still go by once in awhile! She needs a LOT of help.... She can't stand yet, on her own.... not to mention being able to talk on the phone.... All she has going for her, is she can laugh and cry.... and move her left hand and arm, like for the TV remote control.
She probably eats with her left hand, but she is right-handed.... I think she needs help going to the bathroom, to bed, to her wheel-chair.... Her right foot is still in that brace thing, to keep it up... otherwise, it will pull down....
I complained about using the walker, when I broke the top of my leg... the femur neck... My leg just hung there, once I got up. They put a rod, and a few screws, but it took about a YEAR, and I don't usually use a cane, unless we are walking far.... but to not be able to even stand.... much less walk, would really get to you, mentally..... At least they sound like they know what they are doing.... Mike has to have 12 hour care for her at least! Maybe not all night, but I'm not even sure about that.... She can FEEL her leg.... just not move it.... Something about that part of her brain, not being able to signal it.... same with her speech.... she TRYS, but can't get the words out....
I think it's because she laid there for maybe 4-5 hours.... on the ground.... Until her Son was called to find out where she was.... They talk about those "alerts".... those things you wear, but you have to be able to press a button, and she wouldn't have been able to do even that.... Some kinds "sense" something wrong, and will call for help, but I don't know about them.....
My friend Theresa had one, but it was connected to her phone.... And again, you have to be able to push the button, then someone on the phone will ask you if you are alright.... I suppose if you don't answer, they will send emergency help out? But she didn't have the service that would "sense" something wrong, or a "fall"....to automatically send out help.
You just never think about being totally disabled like that.... to not be able to tell someone what you are thinking, much less move.....
How are you Carole? And Cammi? You had a B'Day? Are we still talking about those? But any reason to celebrate, is reason enought! Ha~ !!!
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Thanks Sweet Hope, I looked at the melatonin and it has magnesium in it which I can not take with the Xeloda nor can I take anything with folic acid in it. Benedryl wires me. So here we are.
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Chevy, if your friend gets intensive rehab from the beginning she may get some of her abilities back, although I think this might depend on her fitness before the stroke and her current age. My 37yr old daughter had a stroke on May 23rd last year. She lost the use of her right hand side and doesn't look like getting 100% use of it back.
Her problem didn't start that day as she had a malignant brain tumour when she was 10 and the surgery for it left her as if she had a stroke down her left hand side. After the treatment for the cancer she was moved to a home for crippled children where she underwent full on physical, occupational and speech therapy. Monday to Friday she spent 6 hrs a day in the gym with her therapists and got the week-ends off for good behaviour, lol. She went from being a rag-doll in a wheelchair to walking (with a slight limp) out of there 8 months later. Mind you, she was left handed before all this and had to learn to use her RHS. which would be difficult at anytime, without her speech being impaired by having her left eye and side of face dropping.
This time her face wasn't affected but she now can't control her right hand or leg and scoots around in her wheelchair using her left leg for getting around. We understand her when she talks but are not sure if strangers can understand her as her speech is a bit slurred and sounds even worse on the phone. Kellie spent 34 weeks in hospital, mostly waiting for a placement in a group home where she gets 24hr care with all facets of food preparation, bathing etc,. We had to do this as I could not physically take care of her any more due to my frailty with bone mets and it was also better to get her establlished before my number came up. Also, our house is what we call a 'high set' here in Australia, which means that all the living area is set on the first floor and underneath is used as the laundry, garage, workshop and storage, gardening junk area. Trying to get her up or down 14 stairs was beyond both my husband and I so, even if we sold this place and went to a 'low set' home it still wouldn't be in her best interests in the long term.
She now lives in a lovely modern home which she shares with three other 'clients' and has settled down to her new life better than I ever expected. The people who run the home have set her up with 2 per week swimming sessions in a heated therapy pool, wheelchair dancing lessons (with the aid of a carer) and a day out shopping or going to the movies or for a drive, along with family and our visits, when she has time that is.
I thought she might get depressed and start having hissy fits once she realised that her new normal is nothing like it was a year ago, but all in all, she has accepted her restricted circumstances with grace. I just hope she continues to progress physically and gets some more of her abilities back.
I hope this gives you a bit of insight into what your friend may have to accept so that she keeps on trying to move one step further on her journey.
best wishes to you and your friend,
Sheila.
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Good Morning gals...! Aussie, thank you SOOOOOOOooooooo much! That was a beautiful post, and we can all tell how much your Daughter's stroke and her previous surgery affected you too... It's just so awful.... I know.
With Carol, she is 78, just a few months older than me... She has always been VERY active, and in love with this guy-friend of hers, for the last 2 years... So it was like "just came out of the blue!" One minute she was out in her yard, evidently watering, and then it hit her when she was by the faucet......
At the Care-center, she gets re-hab 3 times a day, and just once on Week-ends... She IS getting slowly better... And if it weren't for her Insurance, I'll bet she could stay longer. But maybe one more week, will be enough to get her home. And then a lot of help once she gets there....
Yes, she CAN scoot around in that wheel-chair with her left leg... And move her left arm just fine... She seems to know what she wants,.... like reaching for the remote, and changing the channel, or turning it off, and reaching for her drink... but her speech is going to be a long, slow job for her....
No, I don't see how anyone could give constant care of someone who has been taken down like that... She can't stand alone... Has to be helped up and down... It's hard just trying to HELP, like me trying to help her put her bra and top on... I would have pitched that bra a long time ago, but she is such a lady.... and ladies need to wear a bra...
You give ME hope, that she can slowly come along... like your Kellie! I wish she COULD go to another place, where all that re-hab would help her get going again... 34 weeks is probaly what is needed...
It's probably hard for you guys to keep up your care for her also! I know I kind of dread seeing her there, like she is....
As your Daughter's parents you really have to just accept what has happened, and build that into your life.... with Carol, it's like I kind of lost her as a friend, and she is like a little child, trying to learn things all over again.... and I'm her big sister, trying to help her learn just the basics.
And it just gets TO you... wanting to see her, but feeling so BAD and dreading to see them in that shape....
I've read your post a couple times.... Thanks for posting it! It helps to understand.....
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Chevy - After my Mother's stroke, both PT and OT people came to her house to evaluate, test and re-train. They were covered under Medicare but I can't remember for how long. Several months I think. They taught the care-giver (s) (mostly my Dad) how to work w/her every day.
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"Common sense and a sense of humor are the
same thing, moving at different speeds. A sense of humor is just common sense,
dancing."
-- William James0 -
Thanks Minus.... When I talk to her Son, I'll see if he is aware of that.... She lives alone... Always has... Volunteers for several places, and her and her fiance' travel around the world....
I honestly don't know what her days are like, in the Care Center.... We only see her about twice a week, for about 1/2 hour... And they are always coming to work with her it seems like.... Just hope she gets the same care from home....
I know she probably gets a lot of visitors, but we have only seen her Grand-daughter and her Son.... I will be so happy when she can talk to me.....
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Thanks for all the inquiries and good wishes. I am doing very well. No pain at all so far thanks to a pain med pump. The tube is injected into the back of my thigh and automatically dispenses the numbing agent. There's a manual pump, too, but I haven't had to use it. My foot is numb and doesn't seem to belong to me. I'll take a picture with my cell phone.
I get around with a walker that has a seat. I use the walker as a scooter with my knee on the seat. No weight bearing on surgery foot for a week. Morton's Neuroma was the dx. Vertical incision on top of the foot between 3rd and 4th toes and nerve removed. Dr. said it was much enlarged with thick walls, no longer doing its job, just causing pain.
DH is taking great care of me. He's an excellent nurse.
Just downloaded 10 books from the library to my Kindle so I have lots of reading material.
Happy Birthday, Cammi!!!!! We miss you.
Thinking of Mommarch.
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Ah, now I remember. So glad you are doing pretty good Carole.
When I read your dx and how it was done --- I really thought --- well, staying off of it so it could get a good start healing really sounds like the thing to do. I'm still thinking my Dh had that done one time, but I forgot to ask him.Hope you stay pain free and enjoy those books. A nap or so likely might feel half way good too.
Got Dh off this morning -- or I should say -- he did it himself. He was being picked up by family who were coming from Tennessee and they should get into Sioux Falls, S. Dakota sometime tonight -- after 9 p.m. or so. I think they have likely run into rain and I'm sitting here waiting for it here.
I'm working tomorrow night and then taking care of a friend's cats while she is gone to FLA. for three days -- Dh will be back right around when I start. Then later on the last three and a half days of the month I'll go stay with the little lady I sit with. So, this month will really be busy for me. Also trying to go to the gym at least once a day. I walked a mile today and rode a bike for 3 miles and used the elliptical workout machine for just a bit. Since it is full body work-out I don't spend too much time on it.
See you all later.
Jackie
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Carole: So glad to hear everything is going well. Glad DH is pitching in. Jackie's right - lots of naps.
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Elevated feet. 0 -
Trying to catch up. On the one day of sunshine in the past several weeks, I did everyone outside I could, including trimming hedges. I got a bug bite and swollen arm as a result. My husband said I need a hazmat suit for future yard work. The other day I had to go in for a ct on my abdomen due to a bulge that has gotten larger. I think the fee I paid was for chair rental for the 2 1/2 hour wait for a five minute test. No results yet. I'm ready for sunny, warm days to get past the blahs.
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My iPad is being weird and wouldn't let me type.
Nice "do" Puffin.
Carole, I had a rollabout for foot surgery. The first time I rented one that had a basket so I could haul inns around. Second time that kind wasn't available so I got a cheap bike basket from Walmart. Thankfully, I won't need them. again and can walk pain free. Heal we'll.
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Expressing gratitude ignites the light within us and is a sure path to joy. Gratitude is one of the highest vibrations of energy we can create, it's free, and anyone can give it. It can be as simple as being thankful for soup, being thankful one can see, walk, wiggle a finger, or tap to a beat. One can be grateful for happy children, good neighbors, good luck, and simply being alive. . . . Part of the journey toward joy involves not waiting around for trouble, but being continuously aware of our blessings.
Charlotte Davis Kasl
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I am concerned about Sandra, she has not posted for along time.
Wed. was a bad day, laid down at 10:30 AM and did not get up until 4:30 PM. Thursday was better.
Last night DH turned the fan on the window air conditioner in our room and I covered my legs with my electric blanket and turned it on. Just a few cramps and then I slept like a baby. Was so glad.
Got my blood work done yesterday at the hospital in Alpine. Dr. Sterns who was the Chair of the Biology dept. when I worked at the Univ. was my lab tech. Boy is he good. Good to see him and have a visit.
Everyone take care, Carole take care of that foot, I think foot problems are the worst.
Hugs
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I expect to pass through this world but once.
Any good therefore that I can do,
or any kindness that I can show to my fellow-creature,
let me do it now.
Let me not defer or neglect it,
for I shall not pass this way again.
- William Penn0 -
Good morning to everyone. Sun is shining but just heard rumble of distant thunder. Managed to shampoo my hair in sink and take a washcloth bath today.
3 inches rain yesterday and last night. El Niño spring and summer. Dh says humidity is very bad outside.
Very tired of invalid status but grateful nonetheless.
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Carolke.... that's probably the same as a "spit-bath".... That's what my Grandma used to call it.... Ha! ONE time, I was with my Cousin, and she had something on her cheek, so I licked my thumb, and wiped it off.... She said...WHAT ARE YOU DOING???? And I just laughed... My GIRLS never minded!
So DARK here! Supposed to rain, for the next couple of days... Just so we don't get the hail with it.... Doesn't it make you feel good to wash your hair?
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Checking in --- was a long day and evening yesterday and today got a little messy this morning. Had to throw something extra in -- a trip to a yard sale. I got a preview and in fact, ( some times my blessings are VERY numerous ) picked out some things and due to the fact that I had worked for the people before -- they would take no money. Told me to pick out what I wanted and just take it.
I took some old towels, an old blanket ( these can be used for animals etc. ) and then found many of the towels were in excellent shape so I'm using them myself and will take my older thin ones ( that I didn't dare part with before ) and trade those out. Also a bed pillow and a couple of spring jackets. Once I had picked out these things and found out they ALL would be free to me --- I quit "finding" treasures. I took care of the home owner for two yrs. but she had to go to a nursing home. I do so appreciate being given these things.
So, I'm very late making an entry. It has tried to rain today but never quite managed. I should be glad I guess. More rain for tomorrow and maybe Monday but not sure on that. Each day though is supposed to have some sunshine included somewhere in the day. I just must have missed it today --- I don't think I've seen any yet.
Enjoying my time alone so far. I do like some alone time on occasion -- no one to bug me about much of anything. I do what I want, when I want pretty much. I'm not big on schedules though when I worked I kept a strict one. I do work now, but it is different.
Anyway it has been a good day so far and I'm happy with it all. I got gas in my car while I was out this morning so nothing to worry my head about there. My computer seems to be working fine. I was having some issues ( seemed mainly here on BC. Org ) with how my computer was typing. It would not print all of the letters in a word or sometimes even space correctly --- and it was really slow going -- typing and correcting ( all those dropped letters ) so I gave it up for a bit. Apparently it is all repaired now.
I will see you all later.
Blessings,
Jackie
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Carol, glad you are resting and allowing the foot to heal! Keep reading the books and enjoy your leisure.
Jackie, how nice of those people to just give you those "goodies." It sounds like you got some real treasures. I love yard sales. My grandsons always want to go to them when they visit. I give them a few dollars to spend as they see fit and they are always excited about their "finds." I am especiallly happy when they add a book to their purchases!
Teacher...hoping the ct on your abdomen yields good results! I just hate it when I have to wait and wait for medical services. I know they are busy but that was why I thought you made appointments. My surgeon is very bad this way. You usually wait at least an hour if you are lucky. I have learned to take a book, plan the appointment on a day when I have nothing else to do, and grin and bear it!
Thinking of you mommarch and hoping that you have more good days than bad as you go through this again. Like you, I have been wondering about Sandra, too. Maybe she will post soon.
Hey, Chevy, my mom was a spit-bath queen, too.
Hope everyone is enjoying your weekend. It is too wet to golf today so I got most of my pots planted before the rain hit again. The rest of the day as been a rather lazy one. Guess I should think about what we are going to eat for dinner.
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ritajean, did we have the same surgeon, too? Lol I love my surgeon and now I purposely take the last appointment of the day because I can leave work at 4:30, just off Vets Pky, and get to the appointment at Advocate, and still have wait time. I know the staff from a previous job plus I'm employed by the same parent company so we just chat until he's ready. Sometimes it's 10 minutes and sometimes it's 45 minutes
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Hi all. I'm still here. My daughter Allison and I have been busy with lots of manual labor for the past couple of weeks. Doesn't leave much time for the computer. Mike's bad attitude continues to be difficult to live with. For the first time in our 45 year marriage, I let myself consider what life would be like if I moved to an apartment. The stress of his continuous negativity is more than I can handle. I stay busy all day and fall asleep exhausted from all the physical labor. That really helps me deal with the stress. I've decided to get a message to his oncologist and ask her to give him some anti-depression meds. I know I should be more patient and understanding. He's never been sick in his life before. His 50th high school reunion is coming up in late July in So. Bend, Indiana and he was so hoping he could go. Now he has lost interest and says he won't go. It's just the depression.
Mike continues to do much better than expected on chemo so it's possible he might make it another four or six months before it fails and he has to have the bone marrow transplant. Allison has been here 3.5 months now and is considering moving back home to Chicago and getting a temp job at Northwestern University where she worked until last January. She will come back when her father goes in for the transplant. There is still much to do in the house but the "clean room" is finished so both of us feel no urgent pressure to get everything else done right this minute anymore. Still, we work like beasts every day. We've taken a detour from the house-proper and cleaned out the garage as well as doing major improvements to the back yard and landscaping. I think it will do Allison good to go back and see some of her Chicago friends as well as have an opportunity to make a little money. Her kitties will stay here while she is gone since we don't know how long that will be and they've settled into life here with my three cats.
When Allison came Feb 3rd, we were still under the impression that Mike would have the transplant by April at the latest and we were panicked to create the clean room he will need for at least three months once he leaves the hospital. He'll be in isolation in the hospital for a month, then quarantined at home until at least day 100. The room could not have had a renovation done to it in the previous 3 months, so we were desperate to finish it ASAP.
A man we know, five years younger than Mike, died of acute myeloid leukemia a few days ago after a protracted battle. He was unable to find a bone marrow donor. This is what Mike's illness (melodysplastic syndrome or MDS) will turn into...he has the beginnings of it already, but the chemo is keeping the percentage of cancer cells in his bone marrow to a level he can still function with and is keeping his body from killing off his red blood cells, white blood cells, and platelets at the rate it was killing them in December and January. That's when things looked dire. He was progressing fast and we had not found a donor yet so chemo was tried in hopes of buying a few more months. We've had four excellent months now and have his donor's stem cells "on ice" so it's all worked out for the best. We want to delay the transplant as long as possible because it is so dangerous and is likely to kill him within the first couple of weeks or months. We have another friend that did well with her transplant at first but started having terrible rejection issues after the 100 day mark and is back and forth to the hospital all the time now. She's quite sick. The rejection is awful. It's called Graft vs. Host Disease and all patients get it to some degree at some point.
Life is on hold right now. I feel like a duck - calm on the surface but paddling like hell under the water. It can all change in a minute. When Mike's weekly labs show trouble - and we know that will happen since there is no cure and MDS always becomes acute myeloid leukemia, we'll have only the 7 days prep in the hospital before the transplant.
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Ah geez Sandra.... I understand....
For whatever the reason is, sometimes we all go through that place where you are now..... It's just that I know you can't, because of the condition Mike is in.... Sometimes we can only take so much, and then WE break.... I know.
So is Mike going to have the transplant surgery if he keeps improving? Or is there any other long-term fix besides th
I found this in my email, and just wanted to see if any of you remember these.... I remember ALL of them... Ha!
Even the pants-stretchers!
https://yougottobekidding.wordpress.com/2014/01/24/lots-of-memories/
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"Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship."
-- Buddha
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I'm in the line that says how wonderful to hear from you Sandra. We feel concern ( though I do see you on Face Book ) when we don't hear from you much. We don't dessert people in a time of need -- no matter whether it is them, their family, their good friends -- whatever it going on, we want to offer mental support and care. I for one believe you are so right in seeking the possibility of an anti-depressant for Mike. Maybe even something for yourself.
You have all been through so much and it is hard to stay cheerful though negativity. So easy ( the little voice inside WANTS to make you believe ) to give in, but it isn't you and in reality -- that is a huge reason why we are here. To continue to strive always upward, even if we only gain the most minute momentum. Though our NOW can be harsh and extremely difficult --- it is the whole time span ( race ) that will ultimately tell if we have managed our difficulties with grace. I know everyone here is mentally lifting you up.
As for me -- well, rain is likely on the way. I don't mind so much really. It has been somewhat easier ( not totally ) this Spring. It,I guess,seems more appropriate. Also, each day ( though not as much as I'd like ) the sun has been out so I actually haven't been "deprived" near as much as many of our winter months this yr. My light is available and ready to be turned on if I feel the slightest little downturn -- which means too much gray while waiting for the sun's return.
Still so much enjoying my free time away from Dh. I'm sure he is having a really good time. We are great opposites --- he just loves to go, period. I, on the other hand usually feel more comfort in my well-known surroundings. I think as well, always having had responsibilities, some times going somewhere doesn't feel like something that would energize me. I'm more of a -- just let me veg in front of my own t.v. with my own home-made snacks and call it even. We manage. I do insist that every other yr. is my yr. and we do day trips and things that don't take up so much time that I can't fulfill my obligations here. It works -- not like most people, but it works.
Anyway, I'll be checking in from time to time after I get home from town today. Hope you are all going to have a fantastic Sunday.
Blessings
Jackie.
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Sandra, praying for strength for both you and Mike to get thru this journey.
Chevy, yes I also remember all of these! I even went to the studio to see Kikla, Fran and Ollie , as they came from Chicago. I even haad those leaf drinking glasses. Pants stretchers, where are the curtain stretchers, remember helping my mother put the curtains on them to dry. Pincurls, but also had the foam rollers and the ones with brushes inside to poke you in the head.
Rained hard last night , we need it. sun is out and it's warm now, but may rain again. Been taking breakables off the walls and shelves , as we are having the shingles replaced this week. I'd have liked a tin roof to go with our log cabin, til I priced them. Twice as expensive as shingles. Not only taking down pictures, but other stuf too. Got a lot of stuff, especially as I have a large Depression Glass collection. Had to wash a lot of that too.
Still caffeine free and no tachy cardia. Guess I'll tell the cardiologist I cured myself, when I go next week! But I miss my GOOD tea and ice tea. The decaff tea doesn't taste as good.mOh well1
Have a good day. Jean
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Oh Sandra, I'm so glad to see your post and update. I had been really worried about you but can now understand why you weren't posting. Oh my gosh, gal! You have been busy! I can only imagine how stressed you must be and how hard it probably is to keep an upbeat tempo around your house. Hugs to you and to Mike, too, as you continue to work your way through this.
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Sandra, Thanks for posting. Hugs to you and Mike. I imagine waiting for the numbers to tank is a lot like waiting for surgery or biopsy results. Time drags. Is he seeing any of his old friends? That might do a lot to cheer him up. Feel free to come here and not be cheerful and consider finding a counselor where you can bitch about how hard this is.
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