Re: OT A year has past. Time to say thanks
- From: " Craig" <weavers@xxxxxxxxxxxxxx>
- Date: Sat, 4 Mar 2006 17:58:09 +1100
Dear Quentin,
I am so sorry to hear of your illness. I wish you the very best and adequate
relief from your pain.
I am one of many lurkers here on alt.support.diabetes and I have read all of
your posts with interest.They have always been scholarly and helpful;
written with a obvious respect and compassion, which denotes the character
of the great person you are. I am sorry, as I am sure are many of us, that
we do not have the opportunity to meet you in person.
Thank you so much for taking the time to share your knowledge and
experiences with us and for being one of the truly nice people out there on
the internet.
Most Sincerely Best Wishes,
Craig
----- Original Message -----
From: "Quentin Grady" <quentin@xxxxxxxxxxxxxxx>
Newsgroups: alt.support.diabetes
Subject: OT A year has past. Time to say thanks
G'day G'day Folks,
More than a year ago I was sitting on a sunny bench at the Sunday
Farmers' Market thinking about where to take the dogs for a swim when
my cell phone rang. My wife had received a call from my GP asking
that we meet him in his office before mid day ... mid day Sunday.
Even though such signs have a loud and clear message one is never
quite prepared for the finality of what one hears.
"Quentin Grady" <quentin@xxxxxxxxxxxxxxx> wrote in message
news:bith02paos8sfsk946aal5dd0f22rdl498@xxxxxxxxxx
G'day G'day Folks,
More than a year ago I was sitting on a sunny bench at the Sunday
Farmers' Market thinking about where to take the dogs for a swim when
my cell phone rang. My wife had received a call from my GP asking
that we meet him in his office before mid day ... mid day Sunday.
Even though such signs have a loud and clear message one is never
quite prepared for the finality of what one hears.
I had, had an annual diabetic blood test. The nurse had made a mistake
and ordered only the three monthly test but thankfully I had insisted
on the full yearly battery of tests. One of these tests includes one
for possible anemia. The doctor had asked for follow up tests for
iron, folic acid and Vit B12. In all cases these were totally
satisfactory. The immunoglobulin count was high. He had then ordered
an immunoglobulin electrophoresis test that exposes the different
types of immunoglobulin. These should look like an evenly bright
spectrum. They didn't. There was one bright line corresponding to the
presence of a rogue immunoglobulin G protein.
I had and will have for the rest of my life a form of monoclonal bone
marrow cancer. There is no cure. That is an absolute thing.
Monoclonal cancers are rare, making up only one percent of cancers.
The closest relative that I know of is leukemia. It is not
environmentally determined, nor is it genetic in the usual sense of
the word. It is simply a matter of a lottery. Every woman alive gets
1 ticket. Every man alive gets 4. Five times in 100 000 a ticket gets
drawn. I is so rare it was unfortunate that my GP had actually had
another case. That patient had the variant known as smoldering
myeloma. This gave me some false hope. A bone marrow test in a
private hospital revealed I would not be so lucky. I was given six
months to live without treatment. With the most aggressive treatment
available in New Zealand it was thought I could get a median life
expectancy of five years.
Life however has is little contingencies where things don't go to
plan. To prevent muscle spasms that could easily tear a rib out of
alignment I was put on an antispasmodic drug called Norflex. An
unfortunate side effect of this is that one gets light headed when one
stands up. One day while desperately awaiting a call from a social
worker, the phone rang and when I answered it .... well I came to
under a book case that I had collapsed onto myself. I spent days in
hospital screaming every time they so much as tried to rearrange my
pillows. I seemed destined to be unable to get to the toilet by
myself and likely to never work again. The pain did go.
I did get to go to Palmerston North hospital where they had the
isolation wards necessary for the treatment which involves an
auto-stem cell transplant. Basically over the course of two days they
harvest one's stem cells, give melphalan, a derivative of WW1 mustard
gas and then reintroduce your own stem cells to one's blood. It is a
relatively new procedure here so nursing students in training came to
watch. Well I survived the treatment but it totally failed. The
rogue immunoglobulin was reduced from 20 down to 20. <grin>
Presumably the two fractured vertebrae allowed the weakened rogue stem
cells to re-enter the bone marrow as readily as the healthy ones.
Well that was that.
The prognosis is that I am in the worst category. Only two patients
are recorded to have lived for five years in that category. I said,
"Well I'll be a third."
That is how it has been. I am a singular data point. I am currently
on no medication for the multiple myeloma. There are rescue meds if
my condition worsens. My oncologist's prognosis is that I am doing as
well on my own as I could expect on the available medications and
better off without them. One of the meds is dexamethasone, a steroid
that makes prednisone look like saline solution when it comes
upsetting blood glucose. Another is thalidomide. It's side effects
include various thrombosis, lung, leg, brain.
Despite all expectations I have returned to work. No school will
employ me. It is too great a risk since my bones are fragile, riddled
with pepper pot holes.
The tertiary sector though is quite different. I teach students how to
be successful. The program works. I also get those incredible
students who have dyslexia and Asperger's syndrome who somehow thanks
to intelligence and will power make it into the tertiary sector.
I'd like to take this opportunity to thank all those people on asd who
have supported me with setting up an internet connection when I was in
isolation. I stayed sane by helping people. It all seemed pretty
ironic that some of the newbies I helped though the stress of a
diabetes diagnosis would never have known that the person who helped
them was in racking pain as the melphalan killed off every fast
multiplying cell and had to fit in helping between nausea and silent
diarrhea.
FWIIW, I had an hour and half conversation with my oncologist who is
one of the foremost experts in New Zealand regarding the possibility
that diet might have been a factor in my getting multiple myeloma. He
is categorical that it hasn't. This was important for me given the
ethics of helping people sharing dietary information.
Thank you all those dozens of people who have so loyally kept my
"secret" I don't think I had to ask anyone to do so. People just
accepted that it was the thing to do and did it with remarkable
sensitivity. If you happen to be one of the people who didn't know of
my situation, don't take it personally. The need for people to
protect their privacy sometimes has its downside. One of them is not
being personally told of something that could be relevant to you.
The book plods on. Although there are chapters on diet for T2
diabetics the book is primarily about discovering a better diet and
putting it into practice for oneself using the resources freely
available on the net. It is also a Hawkes Bay diet. It is also a
Farmers Market diet. These people have all known of my condition for
the best part of a year. IMHO it is better to share such information
with the people who serve coffee in cafes and get to take an interest
in their customers. Why should they suffer the awkwardness as one's
hair thins out and disappears, only to return in luxuriant growth.
Last Thursday I had a wild night out at Boney M concert.
I even got to dance with my two walking sticks.
Best wishes,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."
http://homepages.paradise.net.nz/quentin
.
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