One particularly bad registrar tried to hide one particularly
bad bone scan report like a schoolgirl afraid of her classmate copying. I
read it upside down on her desk between her arms. There was a bit of a row
and we didn't see her again.
The reports were highly technical, and I had to
learn the vocabulary to understand them. I can understand the drs being
afraid that patients will get wrong ideas from reading what they partly
understand, but even mildly intelligent patients soon learn what is important
about their particular
disease, (and we aren't talking 'mildly' here).
The scan reports generally said things like "increased uptake to ... " and a
long list of bits of anatomy, followed by "This is indicative of metastatic
disease." The diagnostic X-rays looked pretty scary. Now I know it
takes a lot of knowledge of anatomy to read an X-ray plate but even I know that
spines shouldn't bend like that, and surely that jumble of bones at the bottom
should be a bit more orderly.
Once the M word had been said, then it was
explained that the regime was now 'palliative care'.
See, my doc says that
chemotherapy at this point is palliative or "salvage," which I dislike even
more, but then he says to keep plugging away at the taxotere until we see if
it's doing any good. Huh?
Well that makes sense even in a palliative regime. If
it can hold the disease at bay then it's worth doing. People like
Carolyn seem to survive quite a long time quite comfortably under this sort of
regime. It does happen that the disease goes into remission,
Well, if I could survive
comfortably, I would do it. I must say, though, the taste of bone met
pain I had was far preferable to nausea. At least if I took my pain meds
and lay still it didn't hurt. I'm gonna have to have a long serious talk
with my family and my doctor.
A taste isn't the real thing. You want to know how bad
bone pain can get? Well it gets bad enough your muscles cramp up and you sweat
all the time and you can't sleep.
Well, that's pretty
much the taste that I got, except people kept telling me it was bad
I am relieved that I
appear to be adequately prepared.
Yeah they kept telling Lyudmila it was arthritis in her
back until she went to an orthopod who said it wasn't. I get the
impression they try treating for anything that looks remotely likely on the
grounds that if its not mets it might fix it, and if it is, well they can't
fix it anyway and trying won't do any harm. Only thing is they don't
tell the patient what they are thinking.
So then you have to have pain meds if only to sleep, more and
more. 30mg of morphine is ok, it kills off the pain and makes you constipated
and that's about it, but as the bone erodes the pain keeps on getting worse
and you need more and more morphine 100mg, 300mg, more.
Around there you
start to get disorientated and to sleep all the time, and twitch a lot even
when you are asleep, while trying to strike a balance between constipation and
diahorrea. At high doses you can switch to other drugs like Fentanyl,
which is better, but you still end up back in the same place after a
while. Then there are structural problems, even if you can control the
pain you can't move around much because you break things. The drugs don't stop
the pain completely, you've still got some pain all the time you are awake,
and a lot whenever you move. You end up deciding how you want to balance
sleep and pain, you can have pain-free and no life by sleeping all the time,
or you can have a painful wakeful life, or something in
If you can keep the tumours down and minimise
the structural damage, you minimise the source of pain in the first place and
don't get into these problems. Pain meds are not a complete answer, they
are only a part of the solution, to take off the last bit. Radiation,
chemo and anti-inflammatories all play a part.
That said, chemo is the
bottom of this particular totem pole. It is generally least effective
against bone mets. It didn't have much effect for Lyudmila. Oncs
tend to want to keep it in reserve for holding soft tissue mets down once it
gets beyond bone. They went for it with her partly because she was
demanding it, and partly because the bone mets were advancing fast and they
thought it might slow things down. They stopped it midway because of gut
problems that were probably a combination of lumbar radiation and
anti-inflamatory side effects.
Maybe they can improve on the anti-nausea
What I'd like to know is how long it's going to take to
determine if the Taxotere is doing any good. The way I feel now, I don't
want to go back on Monday for my third treatment. If I knew for sure
something like, "oh, after six treatments we'll be able to tell" I might be
happier about it.
Sorry to be so miserable.
Can't the onc tell you what his criteria and aims are?
I imagine he will go for a full course unless overtaken by events. Maybe
he'll do scans halfway through to check it out.
I intend to press
it. He is inexperienced and very nice. He actually has a Ph.D. in
comparative literature and was inspired to become an oncologist by the death
of his first wife. Oh G-d spare me. No wonder he loves how witty
and literary I am.
The doctors never really claimed to be able to tell me if and
when she was dying until it was really obvious, about 2 weeks before the end
when the bloodwork showed she had liver disease. The District Nurse was
much better at this, I guess she has much more relevant
Even she couldn't say when. She knew what 'stage' she was
looking at, but she said some would cling on for months in the 'final' stages,
you just couldn't tell. The doctors were very much 'close to' the
problems, attacking the symptoms as they occurred with little concern for
overall progress. This is the way with palliative care, you just react to
the symptoms of the disease as it progresses to maximise the comfort of the
Another matter, last week a close friend (John, early 50's) got a muscle pain in
his thigh that was bad enough to stop him working in the business he owns.
On Friday we heard that it was a tumour and they were operating. This morning I
got a call from his wife: its cancer and he's in ICU! She was
understandably shocked. What a bastard. When it slow and you have
time to adjust is one thing, but having it dumped on you like that is truly
awful. At least he literally bought the farm about 15 years ago, that was
how I met him, I bought his old house.
Oh, heavens, that is sudden and horrible. Is he in ICU
because of the cancer or because of the surgery?
I don't know yet,
his wife wasn't in any state to start discussing technicalities with someone not
immediately involved. However the fact that he is a chronic asthmatic
probably doesn't help. I'll probably find out today.
We got some more information on my friend John, and he seems to
be recovering now although it was touch-and-go for a while there. It appears he
had a bowel cancer in the rectum. The operation was complicated by a chest
infection on top of his asthma. He was having heart function and breathing
supported on Friday, but he is under his own steam again now. They took
out a chunk of gut and gave him a stoma bag. I haven't heard anything
about pathology reports yet.
Oh NO. How dreadful.
Poor John. Stomas and bags just gross me out, and I heartily
pray I never need one.
Talk about a pain in the
You, sir, are a bad bad
Me and my BSOH.
Quoi? Qu'est-ce que c'est un BSOH?
Well, singles ads usually ask
for a GSOH - good sense of humour, so...Comprenez?
AH... the penny drops. Why would anyone specify a GSOH in a
Wouldn't it be a given? Would someone want a BSOH?
Some (most) people are very
naive. They usually also specify that the want a 'genuine' person.
I would be quite interesting in discovering what the alternative was. I
suppose they mean a serious relationship. I had fun writing mine like a
piece of advertising copy. At least it got some replies.
see the Russian girls' ads. They all say the same thing. I have
sometimes seen them word for word identical, I guess they just copied the
sample text handed out by the agency because their English wasn't good
enough. Usually something like <height , weight, hair colour, eye
d-o-b>.."I am affectionate and loving. I like theatre,
cinema, family life and travelling. I want to meet an intelligent caring
sensitive generous man who does not drink." Totally content-free:
I have seen some. They remind me of the Filipino girls'
ads, though the Filipino girls' ads tend to emphasize their
old-fashionedness. I worked with an organization in Hawaii that helped
mail-order brides (mainly Filipina and Thai) so I am somewhat familiar with
He is now out of hospital and
recovering after a -very- near brush with death. He still has the tumour,
but he also had an abscess on his thigh, double pneumonia and deep vein
thrombosis. They are planning chemo to reduce the size of the tumour
before operating on that, once he has recovered from the current lot. They
say the tumour has not attached anything important apart from affecting the
sciatic nerve, which was what first raised the alarm. They are confident
that once it is reduced they will be able to clear it and may even be able to
reverse the stoma. Heavens, what a
is stuck at home with very limited mobility and bored out of his brain. He
has just asked me to get him some computer games - e.g. a joystick and a flight
Yup, that's what I got David, who is stuck in a hotel room in
New Jersey for most of the next couple of months. Now me, I would want a
book, but I guess there's something about blowing away alien invaders that
appeals to the couch-bound male.
Cindy the child-minder has been
remarkable. Despite her own disability, she has been running John's
(reconditioned industrial heaters) business for him in his absence as well as
looking after Natasha. She knows quite a bit about the business since
writing his website (which is how he came to introduce her to me). She has
sorted out his accounts, answered the phone, processed orders and sales, paid
bills etc. and ensured that his one employee (who is a good mechanic but has no
idea about office work) has enough work to do to keep him busy until after
Christmas. No wonder she needs a holiday.
She needs a new title besides child-minder. How about fairy
It has been mentioned. She got
back from her holiday today and insisted on meeting Natasha from school, despite
not having slept for 48 hours. Said she wanted to force her body back into
local time. And to fill time until the pub opened and she could replenish
her Guinness deficiency. Apparently you can't easily get Guiness in the
Dominican Republic. Did I mention she has a 'hollow leg' as far as beer is
What a charming and unique woman!
OT: Simon Schama's "History of Britain" series started on the History
Channel last night. Very good, and he managed to make the pre-1066 Saxons
vs. Romano-Brits vs. Vikings intelligible and interesting. It's
something that I, as a history major, have generally skipped over to get to the
more glamourous Plantagenets, Black Death, and Georges. Is he a media
darling in the UK? If so, does he have some kind of congenital twitch I
shouldn't make fun of, or does he just emote in a comical way?
Sorry, I don't know him. I think
this is something to do with that other world called Television to which most
earthlings seem to be able to transport at will. I admit I have seen,
heard or read a few good items on this era recently, it seems to be now a
fashionable area for research, having been neglected for so long. When did
we learn to call Bodicea Boudicca? Maybe something like the monk
researching the ancient scrolls suddenly coming out shouting "We got it all
wrong! It was a transcription error! The word was
So are you near the naughty River Ouze, whose misbehavior we see on CNN?
Just how soggy IS it there?
No I am standing here at about 800ft
altitude on a hillside on the other side of the Pennines laughing my socks off.
Oh, good for you. It
doesn't flood here, it would have to fill up Manchester first, and that's on a
plain. You can melt the whole ice-cap for all I care. That might
take care of the first 50ft.
Well its pretty wet in the south and
east, but I haven't had to go there. Why do people think its such a good idea to
build houses on the river flood plains, then complain because the people
upstream build flood defences which confine the river and pass the problem
downstream rather than letting the valley buffer the excess?
don't know. We do the same thing here. I have no sympathy when
expensive beach houses in Malibu crumble into the ocean because I have grown
up on a beach and I know the nature of a beach is to be there and then again
not to be there. Why do people live on the barrier islands in the
Carolinas? Why do people live in Bangladesh? I don't know.
Ah the last one is a bit
different I think, they get born there, I don't think they have much of an
immigrant problem. This is just raw population limits - the fertile
river delta will support a big population as long as it doesn't mind being
washed away from time to time. So then they have to breed like rabbits
again to produce enough population to satisfy the river god next
Now there's a thought. What we need is a good birth control policy
for Bangladesh, then build some nice desireable residences right on the
waterfront, double glazing, air conditioning and lots of air freshener, and
persuade the great and the good, well the great anyway, that this
would be a good place to be tax-exiled to. The fashionable place to
live. That's real population control. We could pump away our
least desireable assets on a regular basis.
My godmother's daughter Martha, who is 28 and utterly gorgeous, is on
her second two-year tour of duty in Bangladesh with the Peace Corps.
She loves it and never wants to leave. I guess it takes all kinds. And
*she* grew up in East Anglia and Grosse Point, Michigan, which *I* think are
both fabulous spots.
Oh, how I would love to straighten out the third
I laughed my ass off when I read about a tornado hitting a mobile home
park in Bognor Regis. Tee hee. Mobile homes (or trailers, or
whatever you want to call them) are so clearly tornado magnets in the US that
I don't understand why some bring grad student hasn't done a study on the
phenomenon. Then to find out that this very rare event in England zaps a
MOBILE HOME PARK... hahahahahahaha. Too funny. At least the
phenomenon is consistent.
I was not happy about buying this house that
we're living in now. It is on the flood plain for the Green River.
The real estate agent told us (and research confirmed) that it has never
flooded here. David makes fun of me. However, my uneasy feeling
has continued. Newspaper article last week: Mt. Rainier is
America's most dangerous volcano, and we are DIRECTLY in the path of an ash,
mud or lava flow if it blows up, as it is due to do in the next 75-100
years. I *knew* something felt funny.
Well I suppose living under a lava
flow would make it feel like home.
This is just to rub it in.
We have a protest about fuel prices, well you're a yank, you wouldn't understand
that, but it meant no fuel for a week, then we have a rail accident and everyone
jumps up and down about safety, so the rail authority goes "Alright - you want
safety first, OK lets do it" and shuts most of the network down for safety
checks. Then floods, and the protesters threatening to have another go
next week, although that's mostl;y media hype.
Apparently the protesters
intend to mount a slow-convoy blockade of certain roads and waterways.
There was a joke that the trucks would block the roads in the north and the
boats would block the roads in the south.
Yes, we saw it on the news.
I am enjoying the first real autumn I have ever seen, with the leaves
turning colors and all that. However, I, as a child of the tropics, have a
little trouble managing a coat. I accept that when it is 35° F outside, I
will need a coat. However, I get into my car in the garage, which
is kept warm by the water heater. It's only when I get to where I am
going and face a lengthy chilly stroll across the parking lot that I wish I
remembered my coat. Sigh. I guess I'd better just keep one in the
I am quite annoyed by the presidential election here. I am praying
that Gore somehow manages to pull Florida out of the hat, but I have a bad
feeling that he won't, and we will have the first Republican President and
Republican Congress since Eisenhower. And we all know that the '50s were a
time of great social progress, yeah right, grumble piss moan.
I can't understand why the news hacks think we are so
interested in it.
BECAUSE WE'RE THE BIGGEST AND BEST COUNTRY IN THE WORLD YA YA
NEENER NEENER SIS BOOM BAH! (pounding on chest and
Yeah but we've got HISTORY.
It almost knocked off the
wonderful story of the failed burglary of the Millenium Dome where the burglars
used an earth mover to dig under a vault containing a display of diamonds.
Sadly the police were there waiting for them, and the diamonds had been removed
to safety. I think they had been watching too many
movies.I saw that! I thought it was hilarious! It ought to be
made into a movie.
Said hacks this morning were expressing sadness
that 'Dublyu' appeared to have got in.
That should be "Dubya," BTW.
Touché! I guess the
newsreader mispronounced it. After all they still can't even say
Chechnya without the mandatory southern-english ending "Chechnyar" or even
"Chechneeyar". No wonder they didn't report the war in Tbilisi very
They seem to think he is a bit
of a bad joke.
Yeah, well, a Republican president + a
Republican-dominated Congress = Eisenhower, and many of us who are concerned
with rights secured since Eisenhower are nervous.
I can't believe
there are serious political issues that divide the American people right down
the middle like that, it sounds more like the issues are mainly trivial, and
while everyone has an opinion which they will defend to the death, no-one has a
convincing argument in favour of either.
That is exactly true. We love heavy-duty emotional issues
like the death penalty and abortion, and we don't care about the ones that
really make a difference to us, like economic and trade policies. They're
Funny, my favorite candidate for Senate from my district, Maria
Cantwell, is a dot-com millionaire who refused federal election money and all
PAC donations and is spending her own money on the campaign -- and people
don't trust her and think there's something up her sleeve.