“My eyes were half open
But we didn't see him there
Put the car back in my pocket
And I'm still here in my chair”
But we didn't see him there
Put the car back in my pocket
And I'm still here in my chair”
Rossi/Young
Yet another two weeks of habitual cabozantinib abuse have
passed without incident and once again it’s time for my fortnightly oncology
clinic with Dr. Wheater. Other than the fact that my voice is a little hoarse,
I’ve got no other new ailments to show for my six weeks on the maximum dosage
of my highly potent new chemotherapy drug. No sweats, no major tumour pain, no
sore or dry skin and no sore mouth. I don’t even have the shits at the moment.
“Are you sure you’re taking the chemotherapy?” quips Dr. Wheater clearly
surprised at how well I am faring on this treatment. “Quite sure.”, I assure
him. Dr. Wheater does however, spot that my blood pressure is slightly elevated
and suggests getting a blood pressure machine at home to recheck it when I’m
perhaps a little more relaxed. He also takes some bloods to check there is
nothing awry internally that has not yet manifest itself physically. Nonetheless
things are clearly going well and it isn’t too surprising to hear his decision
to simply carry on with my current treatment at the existing dosage. He also
prescribes me a month’s worth of the good gear and sends me on my way with no
need to come back again for another four weeks rather than the usual fortnight.
Result.
I awake a few days later with a tingling feeling in my hands
and feet and a very dry mouth and throat. The day after that and the tingling
in my feet is turning into a chafing that makes it uncomfortable to put any
pressure on my feet. The inside of my mouth is also becoming quite sore and
somewhat difficult to open wide, should I wish to do so. The much anticipated chemotherapy
side effects, it would appear, have finally kicked in but despite being frustrating
and uncomfortable they are not however especially dampening my energy levels
and I still feel well in myself. There’s therefore no need to cancel any of my forthcoming
trips to Cornwall and Durham. Indeed, I have a rather relaxing weekend visiting
my friend John in Cornwall, even if I am hobbling about a bit on my blistered
feet in a rather haphazard fashion. I also ensure that the ever increasing pain
in my mouth caused by the chemotherapy stripping away the outer levels of skin
does not unduly prevent me from stuffing copious amounts of fish and chips into
it.
I get back home from my weekend in Cornwall to a message
from Gus, my specialist oncological nurse. Apparently my latest blood tests
show that although I’m happily grinning and bearing the chemotherapy side effects,
my liver seems rather less tolerant of being routinely poisoned. The bloods
show that the Alanine Aminotransferase (ALT) levels are about ten times the
normal level, and I’m instructed to take a break from the chemotherapy to see
if they settle down. I’m rather frustrated at having to stop with the
chemotherapy, my feet may well be quite severely blistered and rather painful,
but in a perverse way I was quite happy imagining my tumours undergoing a
similar brutal attack and was therefore keen to keep up the full assault as
long as possible. Dr. Wheater’s first priority is to get me a quick ultrasound scan
test to ensure there are no serious plumbing issues with my liver. I’m booked
into the radiology department at Southampton Hospital two days later where I
bump into Gus in the reception area and am immediately ushered into a treatment
room for my ultrasound scan. The hand scanner is trawled across my steroid
engorged belly and flabby flanks but it's hard to make much out from the blurry
monochrome images it produces on the screen annoyingly angled to the side of my
head. I was hoping for a bit of Alan Partridge styled running commentary during
the scan but the doctor is not especially forthcoming with his findings. I
badger him for a bit more information and he concedes that he can see no
obvious problems such as kinks or perforations in my private pink pipework, but
his view is apparently somewhat obscured by my large measures of tummy gas that
I am clenching onto in a desperate act of politeness. He takes a large number
of static images from the scan to forward on to Dr. Wheater to see what he
thinks, but no other information seems forthcoming today.
I get a phone call from Gus the following day who confirms
that Dr. Wheater has taken a peek at the images from my ultrasound scan and
couldn’t see any obvious physical problems. He therefore wants to simply
monitor my liver function closely via regular blood tests over the next few
weeks with the hope that it will improve with a short break from the
chemotherapy treatment. If so, I should then be able to simply resume the treatment
once it has settled down a bit, possibly with a lower dose if there is still a
concern that my liver is likely to be besieged by the full dosage. I guess the
chemotherapy break will also give my feet a chance to recover too. We have
another trip this weekend to Durham to check out the Lumiere festival and to visit
the girl, so it will be nice if the side effects have subsided somewhat for the
trip.
In the meantime, the blisters on my feet have now burst and have
started to wear away leaving large flaccid flaps of thick dead skin dangling off
the soles of my feet. I can’t help but peel the dead skin off and reveal the tender
new membrane underneath. I realise my error immediately as I touch the virgin fresh
skin and try to make amends by gently rubbing some Epaderm cream that I got
from my last hospital stay into the red-raw soles of my stinging feet, but to
no avail, the pain is excruciating. I post some photos of my offensive ruby trotters
on Facebook and apparently put several people off their dinner. Alas my feet
are still pretty painful when we visit Durham a few days later but with a good squelching
of cream and some thick socks I’m able to cocoon them enough to slowly shuffle
my around and admire the ingeniously illuminated city.
Thankfully subsequent blood tests when we get back home show
that my liver function is gradually improving whilst on my chemotherapy break
and although it’s not quite back to normal, after a fifteen-day break Dr.
Wheater is finally happy for me to resume my treatment, albeit on a reduced daily
dose of 40mg/day, down 20mg from my previous 60mg/day. My liver function may
well be settling down but I think my feet still don’t seem to have quite got
the message yet, the raw skin on my feet is still making it very painful to
walk and its getting close now to our Disneyland Paris trip, which I imagine
will require a fair amount walking about. As our trip approaches I awake each
morning and test my feet by standing up, only to discover I either need to sit
back down on the edge of the bed again or slowly totter to the nearest chair on
my tippy toes making “ooh” and “aah” noises in time with each doddering step.
On the day of our trip to Disneyland my feet have infuriatingly still not
improved, but never mind, we’ve got a wily new travel plan in place. Firstly,
we have now booked seats on the Eurostar so I only have to stagger as far as
the station rather than drive all the way to Paris as I had originally planned.
Secondly, I have discovered that once I get to Disneyland I can hire a
wheelchair in which to be pushed around, and even better still, apparently if I
present them with a letter explaining my medical condition, I should even be
able to get a special pass to enable me to jump the queues on some of the
rides. My daughter drives us to the station and by the time we board the train
to London my feet are already pounding and rather inconveniently still continue
to hurt even when I stop standing and sit down on the train. We have at least
bagged ourselves four seats together around a table and much to Tori’s
annoyance I discover that the pain eases a little if I raise my legs horizontally
and place them across Tori’s lap on the seat opposite. Once in London the next
obstacle is getting from Waterloo station across London to St Pancras station
to catch the Eurostar. I slowly stumble my way across the station concourse to
the underground using my family as shields around me to protect me from the
bustling commuters pushing and shoving their way in all directions. Once our
tube train arrives my daughter gets in the carriage first and swiftly bags the
remaining seat so she can offer it to me when I’ve eventually successfully
manoeuvred myself into position. There’s a few waits at St Pancras as we
collect our tickets and go through passport control but I manage to find
suitable seats or perches to take the weight off my feet while we wait and we soon
make it on to train without making too much fuss.
By the time we get to Disneyland Paris my feet have rested
enough for me to take on the final stage. The station is fittingly right next
to the entrance to the park but we need to collect our park tickets from our
hotel before we can go in, in order to get to the hotel, I really need my
wheelchair, but the wheelchair hire shop is inside the park. We explain this
conundrum to one of the staff at the park gate and I’m clearly not the first
person to pose him this particular dilemma. Without any further explanation
required Tori and I are let into the park and closely escorted to the
wheelchair hire shop where my chariot awaits. As soon as we’ve hired the
wheelchair we are then immediately escorted back out again before we can
sneakily enjoy any of the rides. Once triumphantly installed in my fetching new
wheelchair the Jago family are able to pick up the pace and I’m whisked along
through the Disney village and on to our hotel, The Newport Bay Club, to
check-in.
I could become quite accustomed to my new wheelchair. When
I’m out and about no one normally realises that I have terminal grade 4 cancer
and that I’m in a lot of discomfort from the chemotherapy treatment and am
often restricted in what I can physically do, but as soon as I’m sat in my
wheelchair I’m instantly granted an accommodating dispensation for my condition
from everyone around me. I bypass the security scanner on the entrance to the
Disney Village as my wheelchair is rapidly waved through the side gate, as a
disabled person I clearly wouldn’t have any concealed weapons hidden about my
person. I decide however not to make this sarcastic but rather obvious point to
the security staff and simply make the most of my new found quick entry mechanism.
Keen to milk my new privileges even further we head to the “Town Hall”, where I
cash in a letter from the hospital detailing my diagnosis, for a little green
card that grants me disabled access to the rides. We test it out my new green
card on the Haunted Mansion first, instead of joining the forty-minute queue at
the front we head past the disabled sign at the exit gate and are ushered onto
the ride after a short wait of only a few minutes. I feel a little guilty for
playing the system but in reality my feet really wouldn’t have been up to
standing around for forty minutes so having suitably quelled my conscience we
decide to go for it and I spend the next two days being blissfully pushed
around the parks in my concession chariot jumping the queues for the best rides
and attractions. I liked Thunder Mountain best – we did that four times without
queuing. We also got to meet and greet a fair few Disney characters too including
this tight-arsed duck who unsuccessfully tried to persuade me to give him some
money.
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| Team Jago meet Scooge McDuck |
I see Peter has genes from some other corner of the family; tall, dark and handsome. They are not adjectives you've heard too often !!!
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