'Get well soon' and degenerative illness

Simon Brooke said:

I know the people who said 'get well soon' meant well, but I'm not sure
it's either kind or helpful. The challenge, for people in that
situation, is to learn to live with gradual deterioration, to find bits
of their life which they can still enjoy.

If you read his journal, you'll find out that he's gotten a lot better
recently due to the steroids he's taking. So, no.

--
Keith Willoughby http://flat222.org/keith/
"The men who run the world are democrats at home and dictators abroad."
- George Monbiot

Quoted message said:

Quoted message said:

I know the people who said 'get well soon' meant well, but I'm not sure
it's either kind or helpful. The challenge, for people in that
situation, is to learn to live with gradual deterioration, to find bits
of their life which they can still enjoy.

If you read his journal, you'll find out that he's gotten a lot better
recently due to the steroids he's taking. So, no.

It's entirely possible that there is a general downward trend with
occasional lessening of the symptoms/improvements in health, but always
going back to the downward trend. Kind of like 3 steps back with the
occasional 1 step forward.

Hopefully that's not the case with his condition. *Worst* case is
*hopefully* a load of really bling handbikes on his site, but we can still
hoping for a best case fit-as-a-fiddle doing the can-can with a line of
scantily clad chorus girls.

Simon Brooke said:

A certain very well known and hugely respected cyclist is suffering,
we've recently learned, from degenerative illness. I'm not going to name
him, because he's known to kiboze this group. What I want to say is
about tact. A lot of people have posted 'get well soon' messages. It's
what people do without thinking. It's well meant.

But if you have a degenerative illness, you aren't going to get well
soon. You're going to get slowly and inevitably worse, until you die.
With some degenerative conditions, like MS, the deterioration tends to
come in sudden lumps, with periods in between when things don't feel so
bad. In others, it's just gradual and progressive, day by day slightly
worse. It's very hard to cope with; very hard to maintain your morale.

I know the people who said 'get well soon' meant well, but I'm not sure
it's either kind or helpful. The challenge, for people in that
situation, is to learn to live with gradual deterioration, to find bits
of their life which they can still enjoy.

I know exactly what you mean from the time when my mother was dying.
She was riddled with cancer - spleen, liver brain - and had been told
by the consultant that chemo/rad therapy was available but it would
have to be very aggressive, very unpleasant and that the chances of
remission, let alone cure were "highly marginal". She decided to forgo
this treatment and just got pallative care in the sure and certain
knowledge that she was going to die very soon.

A major sickness like this naturally brings all the distant relatives
and long-lost friends out of the woodwork and every bloody time they
left it was "keep fighting", "hold on" or some other witless
exhortation which implied that maintaining or improving one's
condition was a matter of willpower. I'm not a violent man, but I
really did feel like giving some of these tiny, elderly aunts a bloody
good right-hander in the gob.

Tim Binns wrote on 24/06/2006 08:07 +0100:

Quoted message said:

A major sickness like this naturally brings all the distant relatives
and long-lost friends out of the woodwork and every bloody time they
left it was "keep fighting", "hold on" or some other witless
exhortation which implied that maintaining or improving one's
condition was a matter of willpower. I'm not a violent man, but I
really did feel like giving some of these tiny, elderly aunts a bloody
good right-hander in the gob.

OTOH Lance Armstrong was given less than a 3% chance but took the
treatment and the rest is history. There is clear evidence that
attitude can have an impact on outcome.

--
Tony

"Anyone who conducts an argument by appealing to authority is not using
his intelligence; he is just using his memory."
- Leonardo da Vinci

On Sat, 24 Jun 2006 23:10:20 +0100, Tony Raven <[email hidden]>

Quoted message said:

Tim Binns wrote on 24/06/2006 08:07 +0100:

Quoted message said:

A major sickness like this naturally brings all the distant relatives
and long-lost friends out of the woodwork and every bloody time they
left it was "keep fighting", "hold on" or some other witless
exhortation which implied that maintaining or improving one's
condition was a matter of willpower. I'm not a violent man, but I
really did feel like giving some of these tiny, elderly aunts a bloody
good right-hander in the gob.

OTOH Lance Armstrong was given less than a 3% chance but took the
treatment and the rest is history. There is clear evidence that
attitude can have an impact on outcome.

I'd agree that if you're stubborn, driven and determined enough to
take any and all treatment that's available despte the side-effects
and low probability of success, then you stand a better chance of
remission than if you resigned yourself and put your affairs in order.

OTOH, if you're claiming that mental attitude in its own right can
improve the outcome I'd like to see some refs to recent peer-reviewed
studies. You did say "clear evidence", after all. A quick Google for
"cancer outcome attitude" doesn't appear to turn up much to support
the PMA thesis...

Tim Binns said:

On Sat, 24 Jun 2006 23:10:20 +0100, Tony Raven <[email hidden]>

Quoted message said:

Tim Binns wrote on 24/06/2006 08:07 +0100:

Quoted message said:

Quoted message said:

OTOH Lance Armstrong was given less than a 3% chance but took the
treatment and the rest is history. There is clear evidence that
attitude can have an impact on outcome.

I'd agree that if you're stubborn, driven and determined enough to
take any and all treatment that's available despte the side-effects
and low probability of success, then you stand a better chance of
remission than if you resigned yourself and put your affairs in order.

OTOH, if you're claiming that mental attitude in its own right can
improve the outcome I'd like to see some refs to recent peer-reviewed
studies. You did say "clear evidence", after all. A quick Google for
"cancer outcome attitude" doesn't appear to turn up much to support
the PMA thesis...

ISTR from Lance's book that the specialist who treated him had noticed
that (disappointingly) a positive attitude did not really seem to
correlate with a positive outcome.

--
Dave...

dkahn400 wrote on 25/06/2006 08:27 +0100:

Quoted message said:

ISTR from Lance's book that the specialist who treated him had noticed
that (disappointingly) a positive attitude did not really seem to
correlate with a positive outcome.

Not every "major sickness" as Tim called is a terminal illness. But
often it is easy to assume that all is lost and give up when there is a
chance. If Lance Armstrong had taken the view that 3% chance wasn't
worth it then he almost certainly would have been dead long ago instead
of alive, healthy and seven times Tour winner.

There is some very interesting research around why some people survive
disasters when many around them perish and it was down to character
type. Many just assumed the situation was impossible and resigned
themselves to their fate while a small number would never give up until
they were either overwhelmed or found a way out.

--
Tony

"Anyone who conducts an argument by appealing to authority is not using
his intelligence; he is just using his memory."
- Leonardo da Vinci

On Sun, 25 Jun 2006 10:07:43 +0100, Tony Raven <[email hidden]>

Quoted message said:

dkahn400 wrote on 25/06/2006 08:27 +0100:

Quoted message said:

ISTR from Lance's book that the specialist who treated him had noticed
that (disappointingly) a positive attitude did not really seem to
correlate with a positive outcome.

Not every "major sickness" as Tim called is a terminal illness.

No it's not. But if the sickness isn't terminal then hope or no hope,
the patient will survive, recover and continue living.

Quoted message said:

But
often it is easy to assume that all is lost and give up when there is a
chance. If Lance Armstrong had taken the view that 3% chance wasn't
worth it then he almost certainly would have been dead long ago instead
of alive, healthy and seven times Tour winner.

But according to Lance Armstrong's biography, he didn't know that his
chances were so slim until after he went into remission. In any case,
LA is a single data point.

Quoted message said:

There is some very interesting research around why some people survive
disasters when many around them perish and it was down to character
type. Many just assumed the situation was impossible and resigned
themselves to their fate while a small number would never give up until
they were either overwhelmed or found a way out.

I'm glad to see you backing away from the "determined patients more
likely to survive" standpoint. It isn't true (in terms of population
studies) and it's a horrible case of victim blaming: They might have
survived, but they just didn't want it enough...

"Tony Raven" <[email hidden]> wrote in message
news:[email hidden]...

Quoted message said:

Tim Binns wrote on 24/06/2006 08:07 +0100:

Quoted message said:

A major sickness like this naturally brings all the distant relatives
and long-lost friends out of the woodwork and every bloody time they
left it was "keep fighting", "hold on" or some other witless
exhortation which implied that maintaining or improving one's
condition was a matter of willpower. I'm not a violent man, but I
really did feel like giving some of these tiny, elderly aunts a bloody
good right-hander in the gob.

OTOH Lance Armstrong was given less than a 3% chance but took the
treatment and the rest is history. There is clear evidence that attitude
can have an impact on outcome.

Years ago I had to have a hysterectomy. Okay, not terminal, but it was major
surgery. I had a very positive attitude to it and recovered exceedingly
quickly post-op. My GP said that he'd never seen anyone 'get back to normal'
so quickly and felt my positive attitude to the whole thing was part of my
good recovery time.

Cheers, helen s

Tony Raven said:

Tim Binns wrote on 24/06/2006 08:07 +0100:

Quoted message said:

A major sickness like this naturally brings all the distant relatives
and long-lost friends out of the woodwork and every bloody time they
left it was "keep fighting", "hold on" or some other witless
exhortation which implied that maintaining or improving one's
condition was a matter of willpower. I'm not a violent man, but I
really did feel like giving some of these tiny, elderly aunts a bloody
good right-hander in the gob.

Quoted message said:

OTOH Lance Armstrong was given less than a 3% chance but took the
treatment and the rest is history. There is clear evidence that
attitude can have an impact on outcome.

Could have nothing to do with attitude. Could be just luck, coupled
with the fact that if you're one of the lucky 1% then you won't find
out if you don't have enough attitude to go for it. That will produce
a statistical correlation with attitude without any causal effect in
it.

Attitude may also give you a restless exploratory curiosity which may
lead you to stumble across the unexpected remedy that actually works
for you. So I'm not knocking attitude at all, just pointing out that
its good results could be due to luck and opportunism rather than some
kind of mental magic.

--
Chris Malcolm [email hidden] +44 (0)131 651 3445 DoD #205
IPAB, Informatics, JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK
[http://www.dai.ed.ac.uk/homes/cam/]

Chris Malcolm wrote on 26/06/2006 11:07 +0100:

Quoted message said:

Tony Raven <[email hidden]> wrote:

Could have nothing to do with attitude. Could be just luck, coupled
with the fact that if you're one of the lucky 1% then you won't find
out if you don't have enough attitude to go for it. That will produce
a statistical correlation with attitude without any causal effect in
it.

True, but if you give up and don't even try, then your chances of being
one of the lucky 1% vanishes.

Quoted message said:

Attitude may also give you a restless exploratory curiosity which may
lead you to stumble across the unexpected remedy that actually works
for you. So I'm not knocking attitude at all, just pointing out that
its good results could be due to luck and opportunism rather than some
kind of mental magic.

Lorenzo's Oil, Oliver Sacks & L-Dopa, PVS and Zolpidem...... The mental
magic is in persistently looking for an answer rather than being
resigned to fate.

Its worth reading Folkman & Greer on the importance of encouraging
psychological well-being in seriously ill patients. which is where I
think we came in in this thread.
Psycho-Oncology 9 (1) 11-19, 2000

--
Tony

"Anyone who conducts an argument by appealing to authority is not using
his intelligence; he is just using his memory."
- Leonardo da Vinci

Chris Malcolm said:

Could have nothing to do with attitude. Could be just luck, coupled
with the fact that if you're one of the lucky 1% then you won't find
out if you don't have enough attitude to go for it. That will produce
a statistical correlation with attitude without any causal effect in
it.

There is also the point that you normally don't hear much from the people
who have an amazing attitude and try everything but still die.

Roos

Roos Eisma wrote on 26/06/2006 15:07 +0100:

Quoted message said:

There is also the point that you normally don't hear much from the people
who have an amazing attitude and try everything but still die.

Hey, if attitude was a cast iron guarantee of recovery everyone would
have it. OTOH Jane Tomlinson is still going strong some twelve years
after diagnosis and six years after being given six months with
metastatic breast cancer. She is just about to start the RAAM having
done the Ironman and a number of other incredible feats.

--
Tony

"Anyone who conducts an argument by appealing to authority is not using
his intelligence; he is just using his memory."
- Leonardo da Vinci

Quoted message said:

I'm glad to see you backing away from the "determined patients more
likely to survive" standpoint. It isn't true (in terms of population
studies)

I always assumed that a positive mental attitude was the explanation for
the placebo effect. If that's not the explanation, then what is?

Mark Thompson pleasegivegenerously@warmmail*_turn_up_the_heat_to_reply*.com said:

I always assumed that a positive mental attitude was the explanation for
the placebo effect. If that's not the explanation, then what is?

Conversely, what is the evolutionary advantage of depression that's
left us susceptible to it ?

-adrian

Quoted message said:

Conversely, what is the evolutionary advantage of depression that's
left us susceptible to it ?

When you've got depression you just mope about at the back of the cave, not
going out hunting etc while your happier chums get eaten by whatever they
were trying to catch for lunch?

in message <[email hidden]>, Adrian Godwin

(') said:

Mark Thompson

pleasegivegenerously@warmmail*_turn_up_the_heat_to_reply*.com said:

I always assumed that a positive mental attitude was the explanation
for
the placebo effect. If that's not the explanation, then what is?

Conversely, what is the evolutionary advantage of depression that's
left us susceptible to it ?

I suspect it's a side-effect of things which are evolutionarily
advantageous - specifically, I suspect, of intelligence.

--
[email hidden] (Simon Brooke) http://www.jasmine.org.uk/~simon/

;; Want to know what SCO stands for?
;; http://ars.userfriendly.org/cartoons/?id=20030605

Simon Brooke said:

in message <[email hidden]>, Adrian Godwin

(') said:

Mark Thompson
<pleasegivegenerously@warmmail*_turn_up_the_heat_to_reply*.com>

Quoted message said:

I always assumed that a positive mental attitude was the explanation
for
the placebo effect. If that's not the explanation, then what is?

Conversely, what is the evolutionary advantage of depression that's
left us susceptible to it ?

I suspect it's a side-effect of things which are evolutionarily
advantageous - specifically, I suspect, of intelligence.

I suspect it's also a good way to save energy when there's not much food
around. However, as most sources of stress that trigger depression in the
modern age aren't to do with the fundamentals of finding shelter and food,
then it's counterproductive, which could well make a vicious circle.

A

Adrian Godwin said:

Mark Thompson pleasegivegenerously@warmmail*_turn_up_the_heat_to_reply*.com said:

I always assumed that a positive mental attitude was the explanation for
the placebo effect. If that's not the explanation, then what is?

Conversely, what is the evolutionary advantage of depression that's
left us susceptible to it ?

-adrian

One aspect of severe depression is a decreased ability to plan and
act. This may have helped our putative caveman to mope around in the
cave rather than jumping off a big cliff or suchlike.

One of the recognised dangers of some anti-depressants is that they
restore some proportion of people's ability to plan and act *before*
they start lifting their mood or otherwise levelling off their
emotional state. Docs are warned to beware of increased likelyhood of
suicide attempts during this period...