Cool. Somebody cares enough to keep up on us. I'm still hangin'
--Joe S.

_________________________________

"Take a little 5FU, leucovorin and oxaliplatin for thy stomach's sake." -- 1 Timothy 5:23 (adapted)

Will (the dude) cholangiocarcinoma (bile duct)

I'm still here. I'm doing fine.

Recently the biliary tube that is suppose to bypass the tumour in my
bile duct got obstructed and according to my Doctor, My liver started
to fail. I got bloated with fluid in my belly and had to spend a week
in the Hospital to get well.

It was kinda a blessing in disguise. My biliary tube was due to be
changed that week, a CT scan that was scheduled later on this month
was done, an Endoscopy of my stomach was also scheduled this month to
check on veins that may be growing in my stomach or esphogus was done.
The results of the tests: CT scan still doesn't see the tumour in my
bile duct, there are no veins growing in my stomach and changing the
tube made me better and the bile count in my blood has dramatically
lowered. I still have some fluid in my belly but I got some water
pills from my Doctor to help with that problem.

I'm feeling better now than I have in a long time.

Will

ole Blighty and therefore non condusive to riding the ole motorbikes
actually, although I still ride her to/from work each day.  I am in the
middle of organising this years Rally, booking bands/caterers etc.  Last
year we raised an amazing ?9K and this all went to the Wood Green Animal
Shelter, as this event was held only a week after Tony's funeral I sure hope
that we made him proud.

People tend to have a real discrimination when it comes to Bikers, but they
are so much the salt of the earth and who knows what I would have been like
without their care/support over recent months.  I think that many were
astounded that I carried on with the Rally so soon after Tony's death, but
it was such an excellent distraction it kept me going too.

As for my girls, Kelly and Nikki - what is there to say really.  They are
perfectly happy contented little darlings (she says with her fingers crossed
behind her back!!)  We still mention Tony an awful lot and he is still so
much part of our lives, but lives have continued.  Shortly after Tony passed
away Kelly (age 11) commented that I had had a "personality change" because
I was so much nicer (I think a lot less stressed was more of the deal).  I
wonder if we fully take on board the affect that a relative with cancer has
on our children, we are very concerned how they are afterwards and people
are so skeptical of me when I say that they are 100% okay, but that is also
because their lives have become less stressed too.

This is going to sound just so corny - but I do feel that my life has become
somewhat richer as a result of Tony's illness.  I think that you come to
realise just how precious life is and what ridiculous every day priorities
we used to have.  I am certainly more mellow and feel more empathy towards
others in the similar situations, I hug my mates so much more these days,
it's almost embarassing!

Anyways I'll sign off before I ramble on forever more!!

Hugs to each and everyone of you here.

Alayne

Because I have recently started posting again......

Adenoid Cystic Carcinoma of the Breast, dx'd 1998.  Two lumpectomies and a
partial mastectomy, lymph node dissection, plastic surgery.  My margins were
still 'questionable', so I chose to do 37 radiation treatments.  The down
side was that the radiation diminished my right lung capacity by 15% because
of collateral damage.  The up side is I am alive and kickin' with no
recurrence.

I'll trade the downside, for the upside.
--
Take Care,  Sharon Lane
http://www.rare-cancer.org

My close friend was diagnosed with lung cancer a few days ago. She
lives in Germany, so I'm not exactly sure of the name or stage. But
it's inoperable, though it has not spread. I don't know what to do or
what to expect. I haven't been able to get hold of her through emails
or phone calls, though I spoke with her husband yesterday, who seems
upbeat.

Very Sad,
Pia

MarsRover@example.net said...

Hi all!

I was rather hoping that having introduced her to the NG mother
would provide her own updates, but... *sigh*.  Anyway, mother's
doing fine.  She's progressed from sludgy pureed food to "I'll mash
it and see how it goes"; however much to her distress she still
can't cope with the skins from capsicums (capsica?) or potatoes.  
She still has no feeling on one side of her face, and is complaining
that her smile is 'lopsided'.  Well, she's probably right, but it's
so slight that it's barely noticeable, and indeed wouldn't be unless
you were to look very carefully.  What's more, it doesn't make the
slightest bit of difference really to the way she looks.  From the
PoV of the cancer, it looks as though the tumour has been removed in
its entirety, although she hasn't seen her own consultant recently.  
At her last appointment however, she was told that she could wait a
bit longer between that and the next one, which she took as good
news.  Fingers and wotnots crossed...

Hello,

I wrote awhile back about my online friend, Jenn, who's husband has
stage IV colon cancer & mets to the liver.  It is a small cell lung
cancer that has invaded the colon.

I tried unsuccessfully to bring her to the group.  I have since learned
that she's very medically inclined & has gone through another cancer
battle with her husband, so I no longer mention her coming here.  I just
try & support her as I would want to be supported.

Her husband has been through 1 complete cycle & 2/3 of another cycle of
chemo.  He's spent more time in the hospital than anywhere else
combined, I believe.  The chemo consists of Cisplatin the first day &
vp-16 for the following 2 days.  He is home now & feeling better after a
hospital stay & blood transfusion.  Tomorrow they go for the dreaded CT
scan.  We thought they'd give them more time, but the doctor's are
anxious.  The results will come in Monday for them.  

Everything is up in the air & the air is very tense.  His future now
relies on what that test shows.  To continue the chemo or to live out
the rest of his life...

I lurk here every so often.  Especially, when I'm at a loss of words.  I
know what I wanna say to her, but sometimes words just won't come.  Both
of my parents passed due to cancer & my Mother's was also stage IV colon
with mets to the liver.  There's been a few times that I wanted to post,
but I have hesitated because I don't know how I will handle the emotions
just yet.  Getting emotional is good, don't take that wrong.  I would be
emotional no matter what.  Let's just say I'm working my way back. : )

Best Wishes,
Maggie

Yup, had it on 9/8/03.

Elsie
Stage 3 colon cancer

It's been an interesting ride since then.  I had 4 rounds of CPT11 and
Xeloda over 4 months after that.  Again, I never lost my hair.  I also
didn't get sick until the very last chemo.  I don't know what happened
on that one, but I ended up throwing up DURING the chemo session - and
it took me a few days to get back to my usual self again.  That was
sometime in January.

The next step will be the ileostomy reversal on March 8th.  I was told
to expect another 4-5 days in the hospital and about a 3 week
recovery.  I just talked to my physician's assistant and she told me
that I needed to go in for a gastrographic enema on the 2nd to make
sure that there are no leaks in that nifty little j-pouch they created
before they actually reconnect me.  I guess that does sound like a
good idea....

Other than that, I've been cleaning house like a mad woman.  I have
all this junk in my basement that I just don't need to be lugging
around with me any more.  Things that make me angry at my Ex-husband,
things that are 3 sizes to small AND have stains and holes in them.
Stuff that's just not worth it...  I have plans to turn the "junk
room" that's my basement into a nice hangout for me and the kids.
Once the stuff is out of there, I'll call one of the waterproofing
companies and get that started.  I can't wait...

The kids are doing well, too.  I believe that they have just about
forgotten about their Mom having cancer.  There are no outward signs
of it, and we're just living life as we always have.

I guess that's all the news for right now.

Elsie

Someday in the distant future, archeologists digging thru the ruins of
alt.support.cancer  will discover that J <MarsRover@example.net> had this
to say on 11 Feb 2004:

I'm fine. just havent had much to say lately.

I have a trip at the end of the month.  Always wanted to go to spring
training

J <MarsRover@example.net> on 11 Feb 2004 suggested:

       Was called two weeks ago at 8 in the morning requesting I come in
for a CT and full blood workup the next day.  They found tumor cells in
the fluid they took out with the thoracentesis, which is really bad
news, and not a good sign.  This week they had me get a bone and brain
scan.

       I'm waiting for results, and I've noticed that since the
Thoracentesis I've been getting pain in a lot of places that I didn't
have it before, and increased in places that I did. I also get random
pain which is really obnoxious. So, I don't know what's going on, or
what I'll be doing next.

       Had it not been for that call, I'd be in Mexico City at this
moment, but the docs strongly suggested I hang out until they figure out
what they want to do.  And since they have gotten me this far, I'm
deferring to their judgment, though I'd rather be in Mexico.

       Also, since all the testing started again, I have been extremely
fatigued, and feel tired all the time.  One of the reasons my postings
have diminished.  I'm just too tired to even read most of the postings,
much less add to them.

       I do very much appreciate you remembering me, and asking about us!  
It's a very nice, and wonderful thing to be remembered.

       I hope everyone else is doing better than I, and that we all get
through what's currently ailing us, and back to the true joys of life!  
*HUGS* to anyone that wants one (or more)!

--Douglas

<snip>

Hello all,
I came here in 2002, after one of my best friends received the news that the
breast cancer she was in remission from, had returned and metastasized to her
liver.  That was February 26, 2002.  She opted not to have any chemo or
radiation this time, having been through it all before.  She died on September
11, 2002, and I'm still here.  Having lost Stacey, and others since her death
(some who frequented this NG), has given me a much deeper sense of compassion.

Love,
Trish

I'm new here. I have been in remission from Stabe 1b Cervical to Uterine
cancer.

Now I am off in search of advice, recomendations, help and council for a very
dear friend who was fired due to his cancer.

I feel powerless, and more and more I hear that the terminally ill have
virtually no rights. So hear I am, some time lurker, some time poster, all the
time Crier because I am at a loss of what to do and how to help.

I had surgery and immunotherapy and went into remission, my friend has a rare
from of throat cancer that spread into his nodes, mouth (he now only has 6
teeth) and face! It's all surgery, chemo and guesstimations for him because so
few people have this type of cancer. So I don't even know to say one way or
another that he has a chance to make it or he doesnt.

All my support groups when I had my cancer active would say "Don't ask why me,
ask WHY NOT me"

To heck with that, I want to know, why me? Why us? *sigh*

Bless you all and I hope healing and comfort can be ours this year.
WFBE Flint MI FIRED Tony "Magoo" Mirusso for having cancer!
Leave an E-Message or voice mail for Bruce Johnston @
http://www.b95.fm/contactus.asp or Call (810) 720-9510 Ext: *825
Tell WFBE to give Magoo his severance!
CANCER IS A DISEASE, NOT A CRIME

<snip>

Hi J & group,

I've been a lurker for a few months now and am enjoying my stay.

I've got Stage 4 rectal cancer with mets to liver & lungs for some 4+
years now.  For the most part I have failed all conventional
treatments: 5FU, CPT11/Camptosar, FUDR w/ hepatic artery implant pump
+ zeloda, & Oxaliplatin.  I was not eligible for the erbitux trial due
to my negative EGFR.  I am currently on Iressa and holding steady for
a couple of months now based on recent CT - hooray!

I have a wife, son 11, and daughter 14 and am trying to enjoy every
day with them to the fullest.

Best regards,
Holden

Hi all.  We're doing fine, more or less.  My computer died, or so I
thought, so I gave it to my daughter and was given another by some
friends of ours.  It turned out to be a bad mouse, bad, bad, mouse.  
However, I'm using my daughter's computer to type this, as I cannot
convince the one I was given that I'm permitted to go online using
Earthlink, as the previous owners also had earthlink and security sealed
the d*mn thing, somehow.  If we don't get a weather event tomorrow
(possible snow and ice) one of them is supposed to come over and unstick
it.  Bad Mouse, Bad, bad, bad mouse.

We were in a car accident at the end of January.  We were solidly rear
ended by a car at the scene of another accident.  The driver of the
other car was watching the accident and didn't see that all of the other
vehicles in front of him, including our van, was stopped.  We were all
wearing seat belts, and are fine, except that the accident exacerbated a
previous back injury (just more spasms) and I was in pain for a few
days.  We are getting a new bumper out of this and I had to go pick out
some new bumper stickers.  I was rather attached to the one I had that
said "Psychiatry is expensive, popping bubble wrap is cheap...you
choose."  I couldn't find another one like it, so I settled for one that
says "Caution: Weird Load."  Who says we're normal here at chez Shirk?  

Anyway the occupants of the other car were not wearing their seat belts,
and ended up with mild concussions.  They got off a lot easier than it
could have been.  The passenger hit the windshield with the top of her
head and spider webbed the whole passenger side.  I still am having
nightmares about what could have happened to her.

I'm still working, Rob is not.  He can get educational benefits, I
cannot until the army and Veteran's administration decide that his brain
cancer is a permanent 100% impairment.  Sigh.  I never knew that brain
cancer could be a temporary or partial impairment.  Oh well.  He comes
up for review this coming October.  If the army and VA decide that he's
impaired enough, I'll be able to get educational benefits.  

Our son, Mike is going through training at the Job Corps center at
Kitterel North Carolina, for a future medical career.  He says that he
wants to become an Optometrist.  I hope he makes it.  The center is
working with him to possibly make it happen.  Mike loves the training
he's already getting and seems settled in, though homesick on a constant
basis.  We've told him that we can only bring him home once a month, as
we want him to get used to being on his own.  It's hard though.

We still have nine cats living here.  They are still sending purrs to
those who are sick, depressed, tired, and in need of their help.  If you
want to read more about them or want to share stories about cats or
other animals (we're not picky) of your own, visit us at
rec.pets.cats.anecdotes.  We barbecue trolls, and dislike spammers and
flamers, so it's usually a very friendly area to be.  

Love to all, and we're thinking healing thoughts and wishes for you all,

Pam and Rob S.

Reporting as requested:

Presently our patient is taking Artemisin as a 'next to last ditch'
measure - largely as at least a placebo to hang hopes upon with at
least a little evidence that it might do _some_ good.  This is
predominantly a measure so that psychologically the patient and some
of those around her can avoid addressing the issue that this is
terminal.

Next phase plans involve radiotherapy, but they are waiting until she
"gets worse".

My research tends to support the concept that "getting worse" means
basically stroke symptoms with increasing frequency and severity.  The
steroids have retracted the brain as far as it can go - when the tumor
grow to meet it, there will be little that can be done.  The family
seems to have difficulty breaking the paradigm of Aspirin or a Cold
Capsule --- they seem to fall back into thinking that the steroids are
making her better.

I have tried to judiciously dispense reality so that (a) important
opportunities are not missed due to ignorance and (b) the sudden stop
at the end won't be so traumatic.  Now I'm in the phase where those
who could listen and understand already have, those who can't or won't
will get different councelling later when they need it.

I used the model of the Yin Yang --- I explained that there needs to
be a balance between hope and fact.  If you have only hope and no
fact, fear fills the void.  If you have fact and no hope, same result.
I hope some of it sank in.

People still come out of the woodwork suggesting that this could be
cured by avoiding MSG or eating lots of broccoli.

Patient gets MRI results Thursday.  With that reading I will have
three post-chemotherapy data points and can begin to plot a curve.
Projection is not for death, but for return to condition demonstrated
when we first discovered the cancer.  I project a total of 150% tumor
growth will replicate that condition based on the CAT scans, but this
is a "best guess" because the tumor exists in 3 space and my data is
in 2 space.

Other than that, the circus surrounding the patient now includes angry
calls from the township regarding having her water service lead
repaired --- her boyfriend was 'taking care of it'.  He saved about
$70 over the bid I had contracted for doing the job 3 weeks ago, then
had to pay more because his bid didn't include the permit.  Whatever.
Have to let him drop the ball so the patient can see his input
shouldn't be trusted with her medical needs and decisions.

You really have to watch because people tend to take whatever
experience they may have had and project it onto others...

Advice to anyone with a terminal friend or family member - BE NICE to
the rest of the family and friends - they are the ones who will be
there to help you through the loss (or not).

Gotta go to class --

Out.

Ron

I didn't post very much, am in remission from ovarian cancer stage 3.  Had
surgery, chemo, now nearly two years in remission.

I sometimes look at the newsgroup, but when there is a death I stop reading
for a while.  Get very weepy. I liked to read the interesting and sometimes
very funny posters, like the Cat in the Hat, and funny Martin, Bookbabe and
the Lowly Labrat.

I sometimes think, I looked after myself, ate all the right foods, never
smoked or drank alcohol, and I'm the one who has broken many bones, had lots
of bad accidents and got cancer.  My husband (our golden wedding next year!)
eats junk food, smoked for many years (stopped ten years ago), likes a
drink, and he's as fit as a fiddle.  So now I eat whatever I want and take
every opportunity to be with friends and family. We live in a beautiful part
of England and make the most of our lovely countryside.  Life is for living!

All the best to everyone
Eve

Where and how are you?  I've been missing hearing from you and thinking of
you, since before Christmas.
I've been trying to find your name and your posts and it was Elsie's recent
post that reminded me.

At last word you were possibly going to have to stop work and were maybe
thinking of doing some travelling.
If you (or someone who knows you) is reading this, please have Cathy check
in.

( ( ( Cathy Ross ) ) )
J