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Around the world with cancer
Or alternatively, "how to have a potentially
life-threatening illness in as many foreign countries as possible".
This is the beginnings of some ramblings on my experiences
with Hodgkins lymphoma, diagnosed as stage IIIB in 1987 at age 22 (treated
with MVPP chemo and radiotherapy), followed by a three year remission then
relapse number one in 1991 (treated with ABVD chemotherapy), followed by a
two year remission then relapse number two in 1994 (treated with high dose
chemotherapy and autologous stem cell transplant). It is now January
2006 and a respectable distance past ten year remission time.
I have always been a keen cycle tourer before, during and
after my acquaintances with Hodgkins, and was in fact half way down the east
coast of Malaysia on my wheels when I relapsed yet again. A couple of
years ago I decided to set myself a little goal: cycle across all four
continents before I get too old and knackered. In 2003 it was Canada,
and for 2006 it will be Africa. In about 5 years time, hopefully Asia,
then Australia as a retirement present to myself. We Brits like to get
around a bit.
Having had considerably more jungle juice than the average
Hodgkins patient, plus a bit of toasting thrown in during the early days for
good measure, I'm now in a reasonably good position to talk ad nauseum
(literally) about long term side effects. But that will have to wait for a
few months until I get back from Africa - unless I get Malaria and come back
sooner than expected. All I will say for now is that bleomycin and
lungs don't mix well..... On the positive side, I am still around 18 years
after diagnosis, am in reasonable health (apart from getting old and
knackered) and other than the minor inconvenience of having to work for a
living, I still continue to spend as much time as possible seeing the world
from my wheels.
So I'll start my ramblings, and then finish when I get back
in June 2006. In the meantime, one of the better sites for anyone with
Hodgkins or friends and relatives thereof can be found at:
www.hodkinsdisease.org (Li
Sparks). It's the best on the web. I must get in touch with her one
day.
Memorable quote
"If you're going to get cancer, then this is
the one to get" (lymphoma specialist, Toronto 1987).
Well, I personally would rather have something more mundane
like measles or chicken pox, but he did have a point.
Build up to diagnosis
After working the summer in a German hotel on the Rhine, I
spent a year in Austria as an English language
teacher while still a university student. This was the year Chernobyl went up with a bang and a few
puffs of radioactive smoke wafted around the atmosphere for a while. About
this time I was cycling through the Austrian alps on the way to Salzburg.
Maybe I got more than a suntan that day.....
Having returned from Austria and completed year three of a
four year degree course in Accountancy and German language (what a
combination) it was time to utilise another summer vacation to see a bit
more of the world. There is an organisation called BUNAC - British
Universities North America Club - which arranges student work permits for
British students in America during the vacation periods. The first
ever Canadian Bunac visa programme was starting in summer 1987. I had
a cunning plan to do both the Canadian and American programmes, which
dictated that I do the Canadian working holiday first, since the
Canadian visa requirements specified that you must be returning to full time
education, and the US visa requirements allowed you to go in the summer of
your final year. And so it was to be Canada. I was on the first flight
out for the first ever year of the Bunac Canada programme. And I was
the first person back, too.
Things were going well; I had found a nice flat share
in downtown Toronto, made some friends, got an evening telesales job selling
Canadian lottery tickets to Americans (it never ceased to amaze me that
someone would get their credit card out when a complete stranger called on
the phone), had a potential interview lined up for a daytime accounting job,
and had the weekend earnings potential sorted out following leads to sell
Encyclopedia Britannicas. (Did you know that during the sales routine, the
demonstrator is not allowed to tell the customer the price of the
encyclopedias? For years afterwards whenever I saw an Encyclopedia sales
stand I would make a point of going over and asking how much the set cost
just to watch the salespeople try and wriggle round it). Alas, following a very
productive three weeks after arrival in Toronto, it was time for the brown
stuff to hit the fan.
Diagnosis
Hmmm, I can see a lump in my neck about the size of a
tennis ball. I didn't notice it was there until I saw it in the mirror
one day. Hmmm, must get that looked at straight away; now I
realize it is there, I can feel it pressing on my windpipe. Off to see
my flatmate's doctor, who had a good poke and prod around the neck and under
the arms, and with a concerned expression asked whether I had a cough.
Considering I tended to cough every time I opened my mouth to speak and had been in and out
of my own university doctors practice for the previous nine or so months
with repeated "bronchitis", the answer was, of course, yes.
Time for
an X-ray. A couple of days later I was under the knife (conscious,
with a towel thrown over my face) while another doctor performed a biopsy of
the neck node. He asked a few questions; have I consumed any unpasteurised
milk, have I been in contact with anyone with TB? No, and no. I asked
a question; is there anything on my X-Ray? No (but I could tell that he was
lying). Went home, the local anaesthetic in the neck wore off,
starting to get a bit sore, opened my mail to find a white card with a cross
on the front and a picture of the French language teacher from my school in
Austria with a short note that she had died. It was not a good day.
A few days later the doctor telephoned with the results of
the biopsy: You have Hodgkins Disease. Having never heard of it
before, I asked the obvious question; What's that then? Answer:
it is a disease of the lymph glands, I will refer you to a specialist.
Never mentioned the word "cancer" and that was it, phone down.
Hmmm, two immediate thoughts.
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Thought 1 -
at last someone has found out the cause of my health troubles for the past
year.
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Thought 2 - I have a disease that has been named after
somebody, that's not so good.
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I need to find out what it is. Straight off to Toronto
library to look it up; start reading about interesting things like "five
year survival rates".
Now this is the point where my favourite quote kicks in. "If
you're going to get cancer, then this is the one to get". Because all of
those books in the library were a couple of years out of date (this was 1987,
remember), and fortunately for me and the majority of other Hodgkins
lymphoma patients, there is a 70% - 80% cure rate with first-time treatment.
Unfortunately for me, I was in the 20 - 30% that relapse - but more
about that later.
Symptoms
I was a classic text-book case but, even so, my doctor
obviously failed to read that page of the text book and missed
all the signs. More on this later
Summary of the rest (will complete after returning from
Africa in summer 2006)
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Started on MOPP chemotherapy in Toronto very quickly after
diagnosis, and continued with MVPP regime at Christie Hospital in Manchester
as soon as it was feasible to return back to the UK (with a rather large
bundle of X-rays and scans - but not as large as it was to become)
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Was advised to suspend my final year at university
while undergoing the chemo, and managed to get a full time job as an
accounts assistant for the duration of my chemo
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Did final year and graduated. My worries about finding
employment proved unfounded and I accepted a job with Price Waterhouse in
Windsor. When I spilled the beans on my medical background, there
didn't seem to be an issue. Or as they said at the time: There's as
much chance of somebody leaving the firm to travel the world as there is of
you having any more medical problem. Well, in fact, I was to do
both....
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Did the Bunac Work America programme in between graduating
and starting work. Worked in Colorado for a couple of months
waitressing, was all ready to travel round the States on the proceeds when I
got a nasty case of shingles which ended up with a week hospitalisation and
another premature return to English soil. More thwarted travel plans.
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Started bean counting, passed first set of accountancy
exams, in the process of studying for the second set when a regular check-up
X-Ray spotted something suspicious on a chest X-Ray. Come back in
three months and we'll see if anything has moved. Three months later,
no change. Come back in another three months. Another three
months later, no change. OK, lets give you an MRI scan, that might
show more. This was doing wonders for my accounting exam preparation
(well, what was the point?).
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MRI scan shows disease is active again, and we need to open
you up and collapse a lung so we can get a biopsy from the chest to confirm
diagnosis. OK then, can you wait a couple of weeks for me to do my
final accountancy exams? Alright then.
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Chest biopsy is positive. I am now out of the local
hospital's league and get referred to the Middlesex Hospital in London.
Seems to be localised in the chest this time, so preferred treatment is
apparently radiotherapy to the chest area. There is a bit of a fly in
the ointment, however, in that the protocol at the time I was first treated
was a year of jungle juice followed by a course of radiotherapy to the chest
area. When the notes for the radiotherapy dosage (or as I prefer to
think of it, which level the toaster was set that day) came through, I had
already had plenty, and what would be needed this time to clear the relapse
would take me beyond safe limits. Apparently because the spine passes
through the radiotherapy area, too high a dose risks paralysis. So
that was that, and it was another year of jungle juice (ABVD this time).
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A new generation of anti-sickies made the whole experience
not exactly delightful, but much more bearable. Carried on working full time
with PW, nobody any the wiser apart from the bosses. Quite a few comments on
my new short hair style when I retired the wig.
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Qualified as an accountant, hung around for a year for some
more experience, then resigned to finally get to do some of the travelling
than was thwarted in my student days.
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Decided back-packing was not for me, and it was to be cycle
touring from now on. Got hold of an old Raleigh ten speed, put a rack
and some bags on the back, and headed off to Greece for about three months
on a dry run before venturing further afield with fully loaded wheels.
Came back and bought a decent mountain bike which I then converted for road
touring, and this was to be my trusty steed for the next 10 or so years.
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Started in Singapore, cycled up through western Malaysia and
spent some time there visiting good friends, then flew to Hong Kong. Sorted
out a two year contract with Price Waterhouse in Hong Kong for when I had
finished my travels, then headed into China. Plenty cycling, trains,
boats and buses took me overland through south China, through Vietnam,
Thailand and then the east coast of Malaysia.
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I'd stopped for the day in a small town called Rantau
Abang. Had a wander round and found somewhere to eat in the evening.
Tucking into my curry chicken, I felt a twinge in my neck and, putting it
down to some more stiff cycling muscles, reached up to rub my neck.
And there it was again. Same spot exactly as the original diagnosis
site in Toronto. Undeniable.
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I had by this point lost the appetite for my curry chicken,
and slouched off back to my accommodation, where I duly pulled all the
shutters down, lay on the bed and bawled my eyes out (but quietly, mind you,
even though it was off-season). Did another couple of days cycling along the
beautiful east coast highway, occasionally musing at the waste of such
pleasant surroundings on my miserable self, and at the next available
opportunity threw the bike on a bus from Kuantan to Kuala Lumpur in the
search of a man with a knife and some anaesthetic.
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Relapse confirmed, back to the UK via Hong Kong, where I
left the wheels at the Flying Ball Bicycle Co to come back to the UK later
in the year with the English mechanic. Meandered into Price
Waterhouse's Hong Kong office and informed them that I would be unavailable
to count any beans at the designated time. The job was left open for
me to return to when I had completed my treatment, which was a very nice
gesture considering the circumstances.
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Back to London, scanned again etc. You know you're in
a bit of bother when you arrive for your appointment to discuss scan results
and treatment options etc and your doctor tells you to go and have a coffee
and come back when he's seen everyone else so he can have a good long chat.
But I knew I was in trouble anyway.
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And so it was to be high dose chemo followed by stem cell
transplant. A few months of regular chemo, then a mega dose and three
weeks in an isolation room watching daytime TV and throwing up. But it
worked, and about five months following the high dose chemo, I was in Hong
Kong counting beans again.
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Cycling continued in Hong Kong - regularly out to Lantau and
from Mui Wo out to the reservoir, just before the long climb to the Big
Buddha. But there was a difference, it was much harder work than it
used to be.
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When my two year contract was coming to a close, I chose to
return to the UK - the main reason being that if I was going to relapse, it
was likely to be about two years after treatment, and it might be a good
idea to not be overseas for a change. But the relapse never came. I
got a mortgage, got my head down, decided in my wisdom (?) to specialise in
financial modelling, finally ending up at Deloittes before it dawned on me
one day that I might actually not have another relapse (touch wood).
Time to resign. Time to put some ghosts to rest.
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Back to the place it all started - Canada. I was
denied the chance to see the country the first time I was there, and I was
going to see all of it now on a bike - west to east - come hell or high
water. Some of the other riders at the time would discuss the mental
and physical challenges of undertaking such a trip. For me,
there was no mental challenge: I'm going to get on my bike and ride it
all day, then I'm going to get off, eat and go to sleep. Then I'm
going to do the same tomorrow and the next day. What is mentally
challenging about that? For me it was purely a physical challenge - I had
not done any major touring since the high dose chemo, and wondered whether I
could still hack it. Four thousand miles later, yes I could
still hack it (just about) but those lungs just aren't what they used to be.
Radiotherapy and bleomycin has taken it's toll, so I just need to adjust to
a pace within my limits, then I'm off again into the wide blue yonder.
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Next, Africa. With only a little time for training
because of work constraints, I will have to use the first leg down the Nile
as my training, then gradually speed up. I'm in no rush to get
anywhere, four months solid riding is a long time. As long as I get to
the end in one piece, I'll be happy. In fact, that just about sums me
up.
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