I was living in Nairobi, Kenya in December 1984 when I started to
experience terrible leg cramps. That, coupled with the large hot
swelling on my leg gave the doctors plenty to look at but the answers
ranged at the time from growing pains to trapped muscle tissue!
Eventually a fantastic doctor told my parents he had woken up with a
jump in the middle of the night, suddenly realising that it might be a
very rare disease called Ewings sarcoma.
As the medical world is not very advanced in East Africa, mum and I
travelled back to the UK for some further tests and on the 5th Jan 1985
arrived back in the UK to be admitted to the Middlesex Hospital. I was
10 years old.
Tests revealed a large tumour on the left tibia, confirmed as Ewings and
followed the day after with being fitted with a Hickman line to deliver
the chemotherapy that began the next day after that! It was all done at
breakneck speed as I later found out that I was not given very good
chances of survival.
My chemo followed a rotation. 4 days in hospital having chemo, a burst
of vinchristine when I was next well enough and my blood count was ok,
followed by another blast of the chemo cocktail. I was being blasted
with Actinomycin, Cyclophosphamide, Bleomycin in one go, then
Methotrexate and Cyclophosphamide in the next...each time followed by
the vinchristine.
During this time, mum had to deal with everything - including finding us
a home - whilst dad cared for my sister in Kenya and made arrangements
for us to leave there and come back to the UK.
The results and scans were looking more encouraging than anybody had
hoped and so the chemo was completed and followed by local radiation to
my shin - 39 days over 24 fractions. Unfortunately I was burnt very
badly by the radiotherapy and ended up back in hospital with burns all
over my leg from knee to ankle.
After the burns had healed the damage that had been done to my foot and
ankle became apparent. I was declared Clear in the September of 85 -
only a few months really but it seems even now like a lifetime.
I had 2 surgical interventions on my Achilles tendon to try and improve
my walking. The wasteage in my leg also meant I couldn't do anything
strenuous with it...but I still had my leg and in 1985 that was a rare
achievement. The second intervention left me with a real problem. The
radiation had damaged my skin so much that the operation wound broke
open and was not discovered until the first plaster cast could be
removed. I was in agony after the operation but I don't think I was
quite taken seriously...the plaster was removed and I think everyone was
surprised at what I had put up with. Even me!
I continued to visit the Middlesex, UCH and the Hammersmith for tests,
scans, checks on my lungs etc for the next 10 years. Finally in 1992 (2
days before my first A Level!) I was told that I would have to have my
leg amputated as my walking was now so bad, I was in a lot of pain and
there was really nothing else that could be done. I was admitted for
the operation 3 days after my last A level and the junior came in to
take my medical history. I told her what drugs I was taking and she
turned pale. Nobody had told me not to take any medication before a
large procedure, so I was packed off home for 6 weeks. I had escaped by
hours..and left the Middlesex with the permanent marker 'line' still on
my leg! 6 weeks later I was re-admitted and a different 'visiting'
surgeon suggested a triple arthorodesis and correction of the foot and
so that is what happened.
I am now 24 and still have my leg. I do get some pain from it now and
again and my limp does mean I get neck and back pain from time to time,
but I wouldn't be without my leg after I fought for it for so long.
I still go back to the Middlesex from time to time and am part of a
study at the moment, looking into fertility (following the
chemotherapy). I live in Wales with my boyfriend Steve and I work in
IT. According to my prognosis, I am not meant to be here. But I have a
fantastic life and live it to the full.
Helena
If you would like to contact me, please send an e-mail to [email protected]