Live life to the full

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
ViewsAskew
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Re: Live life to the full

Post by ViewsAskew »

Great post, Betty. Made me smile.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: Live life to the full

Post by badnights »

:) :) :D
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: Live life to the full

Post by Polar Bear »

To update this thread.
Two weeks after an 8 hour surgery in February my sis in law saw her consultant who told her that her cancer was not not not not melanoma cancer .... it is breast cancer. The inital cells had looked like melanoma but the removed tissue when examined was actually breast cancer. This is good ?? as breast cancer has more treatment options. However, had they realised earlier that it was breast cancer the surgery would have been done before Christmas and also there would have been no neck surgery, the neck would have been treated with the chemo and radiation alone.

4 weeks later an MRI was done and further tumours were found in the same breast. They had grown in that short time, and so further surgery was done.

At present 7 weeks since the first surgery there is still no movement in her neck/shoulder/arm, it is unresponsive and so intense oncology physiotherapy has begun. Pain relief has been difficult but eventually this week a 'cocktail' appears to be working.

The cancer is at stage 4 and is aggressive, and the removed diseased tumours are secondaries. No primary has been found.
Chemo starts in one week, on April 11th, for 18 weeks, 6 sessions which will be 3 weeks apart. And then followed by radiotherapy.

Today we were choosing a most inappropriate pair of glitsy flat pumps so that she has beautiful shoes to wear when not feeling so good. Actually it was difficult to choose as they were all so yummy and it is just possible that two pair might make it home. :thumbup:
My brother asked (in a nice way) were they expensive, and sis in law replied 'ish'.

She is inspirational.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Live life to the full

Post by rthom »

It's great that she is so inspirational! Thanks for sharing that PB, and the update. Got me to thinking about a concern I've had for a while now. I'm in Canada and was wondering if everyone is finding that their health care systems seem to be slowing down to a point of deaths. That death we just had was due to cancer as well and was quite treatable but since the HC providers took as long as they did to get the proper surgeries and tests etc. she died--was just sad--so unnecessary.
We of course could feel sorry for ourselves and complain but what would that help.
So, I was wondering if maybe we can make a new thread about how and when we can/should motivate our health care providers faster?
At least maybe in each of our systems we could help others to get done what needs to happen?
For instance, what are the rights or the signs, or if it's not happening in a timely manner how do you get a change. I'm sure each system is hugely different.
Ours is based on social support which is great for getting things done affordably but is horrible if you disagree with the provider--no one wants to be involved--even if you have no need to comment or confront the previous provider--they make the same money so why would they help. There is a large click and they do not often step over the line. If we paid ourselves sometimes there might be a Dr that wants the money and would help, so how can we help ourselves? This sort of discussion, is my idea.
I'm sure at some point we will need the information for ourselves, if we haven't already.
Ideas?

Polar Bear
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Re: Live life to the full

Post by Polar Bear »

Over here the Health Service works to a Charter whereby certain steps have to be taken within a specified time.
However, it is like all statistics. There are statistics, more statistics... and damned lies - can't remember who it was said that, someone of note.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Live life to the full

Post by rthom »

Wow really, that sounds awful. Do you have to pay out of pocket or more like a social thing?

Polar Bear
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Re: Live life to the full

Post by Polar Bear »

We don't pay out of pocket. Our Health Service is 'free' having been paid for via our taxes.
For those who can afford it there is the option of back up with private health care.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Live life to the full

Post by rthom »

That is much like ours except for the option, this is not supposed to be the case but does happen. Here yo have the right to "fire" your doctor but that doesn't mean you'll get another. There is a huge shortage of Doctors--ours train here and move to the USA to be paid better. We pay in taxes here too--they don't get as much and are generally unhappy right now. This makes it really hard to let any doctor go as a lot have to use clinics and therefore have no option for opiods or usually have to deal with long hours wait and different doctors each time. It's like being seen at the emergency each time. Also that means they can't get routine physicals as there is no time for it.
This is the reason for my question--maybe we can all try to come up with ideas to ease others (and ours) paths through the systems.

Polar Bear
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Re: Live life to the full

Post by Polar Bear »

Just to make it clear - the option of back-up private health care is a personal choice. It is not anything to do with the government.

We don't fire our doctors, but we can move to another doctor, hopefully not getting the reputation of being a 'difficult patient' and by that I don't mean illness or symptoms, I mean patient attitude. We don't have to wait too long at a GP surgery, rarely more than 10 minutes, and also can usually get a specific doctor appointment in the practice if willing to wait an extra day or so. it works by appointment although my particular health practice has a walk-in on two mornings per week and also one evening surgery per week.

I actually have no complaints about my GP or his working partners or clinic. The difficulties start to arise when it comes to hospital care and appointments, the lack of money shows, with not enough staff/clinics/hospital beds. At present there are ongoing changes to try to improve matters.

With regard to easing others through the various systems... what sort of ideas did you have in mind.
Off the top of my head - it all appears to come down to the system needing more money. And as I mentioned previously about taxes, it would up the taxes, and this presents other difficulties for folks.

Please feel free if you wish to start a thread on motivating health care providers to move faster.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Live life to the full

Post by rthom »

I have been using the health care system here since a child--serious illnesses-- so i have a lot of experience getting past the red tape or knowing who to ask what in order to get things done quickly.
I've noticed a lot of confusion and stress by folks trying to do the same so this is the sort of thing i was referring to. I don't know if it would be used or helpful, but it was just a though. Like a support page for dealing with red tape etc. Each area has it's own problems and sets of rules-i was hoping this would allow more clarity for the users.
If there is no real need for this--great.

Polar Bear
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Re: Live life to the full

Post by Polar Bear »

Anything that helps folks deal with the confusion of red tape can only be of benefit. :clap:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
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Re: Live life to the full

Post by Polar Bear »

My dear sis-in-law has had her 3rd session of chemo. And what a journey this has been.
Her bloods are dropping much too low, despite boosting injections, and with no tastebuds she has no appetite, and therefore is constantly fighting dehydration. More time is being spent in hospital than out of it. A picc line was inserted to make taking bloods and giving chemo easier but the picc line isn't being a success, it keeps blocking and being troublesome. The oncologist is going to try and sort it today.

Last weekend after having the worst ever diarrhea and pain for 2 days my brother took her to hospital and directly to the ward where she was admitted and again on a drip while tests would be carried out on all that she passed. End result - she has c-diff. And for the first time I saw her weep. She had a good cry and felt better.

And now to a weird situation which I wonder is it brain fog, or am I losing the plot.
Last night I intended to update this thread. In fact I absolutely know that I typed it up in the middle of the night because I was 'under the influence' of my sleeping pill and had to keep correcting each typo. I actually was dozing off and losing my place. So this evening I thought I'd better check my post in case it made no sense or needed amended. Well.....darn.........I can't find it. Can't imagine where it is. I definitely definitely absolutely without doubt know that I typed it.... I think....... :oops:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Live life to the full

Post by rthom »

I hope your sister in law has some better luck today. My sister in law just went through that with the pic line and it was a royal pain as well. They ended up having to pull it. I guess it's the nature of trying to attach a foreign body to a sick body--not impressed.
I have had 2 messages disappear--likely attributed to others posting at the same time. But one other i could not figure out. Now if i get long winded I save everything as a draft so I don't have to re-type. I hate redoing anything here--(mostly because I can't remember what i wrote -LOL)
I hope things get much better for you and your family

ViewsAskew
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Re: Live life to the full

Post by ViewsAskew »

Gosh, PB, sounds like she's trying so hard. I hope they come up with some answers and can find ways to help her.

I've lost more than one post - it's always user error :-). I think I hit submit, for example, but really hit Preview - that's my my common problem. Or I type it, am tired....and never hit submit!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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