Firstly,
we'd like to apologise for the size of this massive back-logged
update, its huge! So huge, I've broken it down into links
so you can either read the lot (if you're REALLY bored!),
or just jump to the latest news at the bottom (because it'll
take you about half an hour to scroll down yourself!).
November 23rd, Monday : Cardio Thoracic Surgery Follow-Up
Post Op Recovery Status
December 6th 2007, Thursday 11:40am :Liver Outpatient Department
2008 New Year Update
January 8th 2008, Tuesday : Haematology
February 19th 2008, Tuesday : CT Scan
March 6th 2008, Thursday 10:40am : Remission Girl?
Sarah
went to see the Cardio Thoracic surgeon to follow up on her
right thoracotomy performed on 6th November. (That’s
“2nd big fat operation” to you and me!) - here's
a Pic of her scar:
Sarah
told the surgeon that she was feeling mighty fine and was
now off all pain killers, to which the surgeon picked up his
jaw from the floor and replied with a shocked “Wow,
oh! Ok”. Clearly he hadn’t encountered a GI Jane
Sarah before!
The surgeon
then went though the pathology report (the biopsy results
on the removed lymph node), which confirmed that:
•
The node was full of metastasised fibrolamellar tumour; and,
• It was likely to have been an incomplete excision
(i.e. not completely removed) because the tumour cells reached
right to the edge of the excised mass.
Despite
that, the surgeon himself believes that he did get it all
because of the way that it looked and the fact that it came
out in a ‘sack’ (lovely!). In any event, he was
unable to remove any more than he did because of the location
of the node (right next to the aorta, oesophagus, and the
vena cava…some other body parts!) and because it was
not within an organ, such as the liver, whereby a margin can
be removed all around the tumour.
 |
There
you have it, the Oesophagus, Vena Cava and the Aorta....
to you, me and everyone else who's not a doctor, that's
otherwise known as a big bunch of important veins &
tubes! (swoon!) |
Sarah
asked him if the cell therapy hadn’t worked because the
tumour had obviously spread. The surgeon replied that the problem
was that the tumour was fairly large (about 5cm) and it is quite
hard for cell therapy to overwhelm such large masses, and works
better on smaller tumour cells. Overall,
it was not good news; however, Sarah will be discussing the
implications in more detail with her Liver team.
To cheer
her up, I took Sarah for dinner where she practiced her skill
of eating / sampling all my food as well as her own!
Sarah
had a flurry of visitors and rested while watching DVDs. She’s
still quite achy and stiff and said she’d like to be
able to jump about a bit and dance and to do ballet again….so
I will be investing in some lead boots until she recovers
fully!
Sarah’s
been having reflexology, and tried out a new vertical reflexology
(courtesy of my Mum), which she said was “bloody painful
stuff” when my mum was pushing her foot and hand at
the same time. Funnily enough though the part of her hand
and foot that was painful corresponded to the area on her
body where the incision was made. Maybe it isn’t just
mumbo-jumbo after all. But that still doesn’t mean that
you can touch my feet mum!
We attended
our follow up visit to the Liver Outpatient Department, where
we had mentally prepared ourselves to loose the day in the
waiting room. I wondered casually around looking for supplies
in the shop while Sarah sat in the waiting room, then popped
to the coffee shop and picked us up a couple of drinks.
As I reached
the corridor of the Liver Outpatient Unit, I could see in
the distance, a flustered Sarah hurrying me down the corridor
and calling me saying
“Dave,
Dave, quick, quick! I’ve been called in!”
So I hauled
ass down to the consultation room spilling lovely hot coffee
over my hands and generally running like a Thunderbird on
strings trying to keep the coffees from spilling on the floor
by keeping my arms as still as possible and my legs running
like a loon. When I got there I had a slight feeling of disappointment
that I wouldn’t get to watch all the programmes I had
brought on my media player!!
 |
Me,
Running like a Thunderbird....don't ask me what the
puppet behind me is meant to be doing! :-s |
We sat
down with a member of the Professor’s team who said
he had heard the pathology results weren’t great.
We asked
why they hadn’t seen the enlarged node before, given
that it was fairly large. He said that everything had been
scanned and it hadn’t shown up before, so basically,
it had appeared as a secondary tumour AFTER the removal of
the primary tumour in the liver but that it had probably already
spread to the lymph node BEFORE that removal and just didn’t
look abnormal at the time. He said we should be optimistic
that there aren’t any other infected nodes because they
too would be enlarged by now.
Sarah
then showed him her lovely weeping wound at the end of her
new scar and the Doc explained that it was where the stitching
knot was, and that the body was trying to push it out because
it sees it as a foreign object. He said that it could be sorted
out as a day case if it doesn’t clear up on its own
within a couple of weeks.
Next entered
the Professor himself because he wanted to see how Sarah was
getting on.
The Professor
suggested that rather than give Sarah any post-op chemo or
further lymphocytes, it would be better to give her body a
break and keep a close eye on her. However, the concern now
is the frequency of her CT scans – he does not want
her to have problems in the future (i.e. another type of cancer)
because of an accumulation of radiation. So, the action plan
is to do a baseline scan in February 2008, and then if all
looks fine to do 6 monthly CT scans to keep an eye on her.
Sarah
expressed to the Professor, that it feels like there is no
end point to the treatment, to which he replied that there
is no end point right now due to the high risk of recurrence
and that Sarah’s main objective is to stay alive!!!
|
With
those words, this above song sprung to mind! (Press
PLAY) |
Even if
Sarah doesn’t get a recurrence, the Professor said he
will be seeing her for at least 10 years and that he believed
that during that time, immunology will have developed and
they will be able to understand things a lot better. He said
the lymphocyte treatment is still in the early stages of development
and only in a few years time will they know the impact it
has on various patients and tumours
The other
Doc advised Sarah that the best course of action was to stay
really healthy and fit and keep her immune system as high
as possible.
Sarah
has spent the last few months getting back to work gradually,
she’s now on 4 days a week, starting at 10am. She’s
enjoying being back to work, but has a new found perspective
of the bigger picture.
We had
a very busy Christmas and New Year, doing our best to catch
up with everyone and their dog! Sarah got a Play Station with
SingStar, and has been singing her heart out though the New
Year so far, and also has become an expert at Guitar Hero!
The liver
op scar hasn’t changed or improved much over the last
6 months, if anything, it stretched / widened a bit, so she
invested in a silicone strip from the US (www.makemeheal.com)
which sticks over her scar and is meant to help the healing
process if used daily for 3-6 months.
Here’s
the latest pic of the liver scar
Before
:
Now
:
As you
might be able to see, there’s a noticeable improvement
in the centre of the scar which has turned an almost normal
skin tone, leaving just the outer edge red. She is going to
get one for the other scar too.
Towards
the end of last year, Sarah had some blood tests to identify
whether she has any blood clotting factors which may have
contributed to the massive DVT and Pulmonary Embolisms suffered
in 2006.
 |
Here's
some pictures of the fat leg for anyone who missed it! |
Today
she went to the Haematology Outpatients Department to get
the results. It turns out that in addition to having an extremely
rare form of cancer, she also has a very rare blood disorder
– a free protein S deficiency. The difference with the
blood deficiency is that it is a hereditary condition –
so we can blame one of her parents!! I personally had great
fun helping Sarah break the news to the in-law (wanna-be’s),
and teased them in every which way I could!
The deficiency
means that she is much more likely to get a blood clot if
a trigger is present. Triggers include cancer, surgery and
chemotherapy – hmm… I wonder if any of those apply
to Sarah?? As a result, she has been advised to go on long
term anti-coagulation (and not that doesn’t mean “working
together with the enemy”, its blood thining!) until
she is no longer considered to be at risk of having a trigger.
She therefore has to go on Warfarin and, initially, the dreaded
heparin injections too and will need regular blood tests to
monitor her blood. Which is great because I had so much holiday
oozing out of my ears I didn’t know what to do with
it anyway, oh well! Yet more time in the hospital –
whoopee!
Sarah
asked if she could have the clot fished out with a wire, as
seen on one of our favourite TV shows, House, but the doctor
said that is a very risky procedure which often is unsuccessful
– unless you are the character Greg House. Oh well,
if you don’t ask, you don’t get.
Sarah’s
CT scan was the usual. We both had the day off as Sarah was
feeling a bit nervous about the whole thing. As usual, there
were problems with finding a vein for the contrast dye –
but fourth time lucky, and Sarah doing a good impression of
swiss cheese, they finally found one!!
Nothing
much more to report here, it's just all down to March 6th
now when we get the results.....gulp!
Today
Sarah found out the results from her last CT scan. Strangely
we both though it would be a fantastic idea to stay up late
watching TV the night before, so we started the day off extra
tired! Wonderful!
We decided
to drive to the hospital and arrived about 9:30 so we could
get Sarah’s blood tests out of the way before the results.
10:40
soon rolled round and we were in our favourite hang-out spot
– the Liver Outpatient waiting room with good old Jeremy
Kyle trailer trash TV blaring out and magazines of celebrity
corn flab gossip from 4 years ago drizzled round the room.
We both
sat at the edge of our seats waiting for Sarah’s name
to be called. We decided to watch an episode of “Peep
Show” to take our minds off it all, which managed to
squeeze out a few smiles from Sarah.
Then before
we knew it, Sarah’s name was being called….but
by a doctor we hadn’t encountered before…. We
dubiously entered the room and sat down thinking “who
the heck is this guy!?”, the doctor then introduced
himself as a member of our trusted professor’s team.
Then his
first question was….
”so
you have FHC, have you had an operation yet?”
Frowns
started to rise as Sarah took a deep breath and started to
recite her entire 2 year ordeal blow by blow to get yet another
doctor up to speed. (sigh)
The Doc
finally turned to his PC to review the results, then casually
said:
“nope,
nothing found in your scan”
….Sarah
and I didn’t know whether to dare smile or not?!! Was
that it? Was that the results we had been waiting and hoping
for?! He then repeated himself,
“nope,
no abnormalities reported in your scan”
at which
point I felt like the world’s biggest weight had been
gently lifted from my shoulders, leaving me in a big pile
of relaxed mush in my seat! Sarah’s smile almost split
her head open!!…I didn’t even know the girl had
so many teeth!!
The doctor
then popped out of the room to see the Prof, and came back
saying “the professor wishes to see you in the other
room” so two shiny happy people holding hands floated
off to see the professor.
There
we had the same news reiterated to us but in a much more direct
manor, the professor advised that there are no measurable
abnormalities and this means Sarah can go on a monitoring
program of every 6 months going forward!
Sarah
asked the question that she has for a long time now, been
desperate to ask...what is her status?
The
professor replied “You are now
effectively in remission”
Two happy
explosions were silently contained as we smiled our brains
out to the reply, this was the news we needed to hear, not
only does Sarah have no new growths to worry about, but she
is now considered to be in remission and can get back to leading
a relatively normal life again (well come on... she does live
with me after all!...how normal can life be in that situation!)
The professor
said he is going to talk to the relevant people about how
frequently would be safe for Sarah to have CT scans (as each
scan apparently gives you 12 years worth of radiation!) and
he will also look into the possibility of MR scans which are
less harmful that the CT scans, but he will have to check
that this can provide adequate details. He then booked Sarah
in for a follow up in mid September this year!
We also
asked if the good results were to do with the lymphocyte treatment
Sarah had. Apparently due to there being no conclusive evidence,
it is impossible to tell, but we like to think that this aided
Sarah in her battle.
And the
last bit of good news we had was that Sarah will be having
her Chemo port taken out! No longer will she be tackled down
by shop security guards when passing though the barriers,
or beep though the airport gates! – farewell port!
And as
you can see, her hair pouring out of her head since the chemo!
We waved our hippy floaty good byes and both toddled off and
found our selves both welling up with tears of pure happiness
and relief as we skipped down the corridor and though the
park to the car….even the fact that a b***stard traffic
warden had given me a ticket for having my car wheels 1”
on a very low curb could not break our happy relaxed moods
– we were on cloud 9.
 |
COME
ON!! It's hardly that bad! I'm not even blocking
anything! |
So we
plan to keep eating well, as much veg as we can lay our hands
on, Dominos will take a knock in income, and we’ll be
pooing fruit smoothies for months! (yummy!), but we plan to
keep on top of Sarah’s health.
Breaking
News: Domino's Pizza shares plummet! |
 |
It’s
Sarah’s birthday on the 14th March, and I’ve bought
her an electric guitar, as inspired by Guitar Heroes! She
picked it out herself, so all I’ve had for the last
week or so is “WHEN AM I GOING TO GET TO PLAY MY GUITAR!!”
and she’s been buying self-learning guitar books from
every shop we attempt to pass!
At the
rate in which she’s getting excited, I’m either
gonna break and give it to her early, or I'm going to have
to hammer some string on to a wooden plank so she can at least
pretend to practice!!!
So if
there’s any further news, then here’s where to
find it, and we’ll e-mail all the update subscribers
if there are any updates, else check out the site in September.
And lastly,
as always, thank you so much to all for lovely cards and e-mails
that have been sent over the months.
Cheers
Dave &
Sarah
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