I was deeply moved and
saddened yesterday to read of the death of the BBC journalist Steve Hewlett. Although a well-known and rightly celebrated journalist I only
really became acquainted with Steve, or it least I felt as if we were
acquainted, as he candidly shared the experience of his cancer on the BBC Radio
4 PM programme. Although Steve’s cancer was different to mine, I nevertheless
profoundly related to how Steve eloquently described how he came to terms with
his diagnosis and prognosis. Steve’s treatment journey also had many parallels
with mine and I’ve shared the highs and lows, the hopes and fears, the waiting,
the chemotherapy side-effects and the uncertainty. As Steve was diagnosed ahead
of me his frank interviews also gave me an idea of what to expect as my cancer
also progressed. Perhaps part of yesterday’s sadness is a selfish and poignant
reminder of the inevitability of how my cancer journey must also end.
I have also found it
therapeutic and cathartic to be be fully open about my illness, albeit within
my small circle of Facebook friends rather than a Radio 4 audience. Indeed
today I thought I’d try and record a few thoughts on death for my slightly
wider blog audience. For those unfamiliar with my cancer journey to date
however, I must first establish my credentials by quickly bringing you up to
speed with the details of my cancer. I am I the process of trying to document a
more complete account of my cancer journey which will require a suitable amount
of motivation and number of “good days” to complete. In the meantime, here’s a
brief precis of the story so far.
Up until the 8th
December 2015 life was normal. I was able to freely ponder where I might be
working in 5 years time, what car I should buy next, where we’d go on holiday
next year, how I’d spend my retirement, what my grandchildren will be like and
what adventures I’d like to take them on when they come to visit. These are all
now mere thought experiments and prospects that are no longer relevant to me
and therefore can’t be sanely contemplated with any form of reality. At around
2pm on the 8th December 2015 I went to the toilets at work to empty
my bladder prior to a full afternoon of meetings. I stood in front of the the tall Victorian
urinal and proceed to spray the porcelain in a thick coating of bright red
blood. I was taken to hospital and following a number of tests and CT scans I
was told the next day, on my 49th birthday, that I had a large
tumour in my right kidney. I had a radical laparoscopic nephrectomy (they
whipped out my right kidney) between Christmas and New Year and despite the
fact that the operation was complicated by the tumour outgrowing the kidney and
merging with my liver I hoped that this might be the end of things. Things were
indeed hopeful at first, my 3-month post-op CT scan showed no sign of any reoccurrence
of the cancer despite it being identified as a rather nasty stage 4 malignant
cancer. My 6-month post-op check-up went
less well. The cancer had returned to the space where my right kidney used to
be as well as my liver and my right lung. I was told that this time the cancer
was inoperable. I was told that there was no cure. I was told that it was
terminal. I was also told that I would still require treatment, not with any
expectation of ultimately beating the cancer, but in order to extend my
remaining life for as long as possible. I didn’t ask how long I might have,
that would be a very nuanced question that would depend on how well I respond
to to the first line of chemotherapy and besides cancer is a complex family of
diseases that has quite unique progressions in individual patients. Despite
not asking the question, it was one my urologist is no-doubt asked by every
other patient, so he took a punt and told me anyway, he said I have about 18
months. An estimate I did not take too seriously but an interesting baseline
nonetheless and a definite goal to try and beat.
I was warned of the
possible side effects of the chemotherapy (Pazopanib in my case), I didn’t however
expect to have almost completed the bingo card of side effects and end up hospitalised
for a week just 5 days after starting the chemotherapy. As it happens the week
I ended up being hospitalised was the same week that my in-laws had come to
stay, so every cloud etc. etc. The upside to all these side-effects (I told
myself), was that if the chemotherapy is causing me this much grief it must at
least be slightly inconveniencing my cancer. The pain and sickness however made
it hard to convince myself that this was indeed the case until 12 weeks into my
treatment when my next CT scan revealed that the chemotherapy had indeed shrunk
the tumours. I rallied and returned to work with fresh hope. A further CT scan
after 24 weeks showed that although the cancer had not shrunk any further, it
hadn’t grown either which apparently is as good as it realistically gets. Although
the Pazopanib was working, it was also known that it would only work for so
long before the cancer would be able to tolerate it and start growing again. Typically
the Pazopanib works for around a year, although I’m told there’s pretty large
error bars around that average. In order to extend the period in which the drug
would be effective I had entered a clinical trial, one arm of the clinical
trial (the arm I was one) aimed to take a break from the chemotherapy with the
expectation that the cancer would have a period of dormancy before starting to
grow back again and forcing me back on to the chemotherapy. On Boxing Day 2016,
under medical supervision, I stopped taking the chemotherapy. Although freed
from the fog of the side-effects within weeks of stopping taking the Pazopanib
I was becoming more and more breathless. I contacted my oncologist and as a
precaution my follow up CT scan was bought forward. I was hoping for a spot of pneumonia
on the lungs to explain my breathlessness, alas the CT scan revealed that the
cancer had come back with avengeance. The original metastases on my right lung,
liver and the area vacated by my kidney had all grown and new metastases had
sprung up in my tummy, in my hip bone and throughout my lungs. The new small metastases
in my lungs had caused the airways to block and my lungs to fill with fluid,
hence causing my breathing difficulties.
That pretty much
brings us up to date. I’m obviously back on the Pazopanib in the hope that it
will be effective once again. If it does not shrink the new metastases in my
lungs and naturally drain the fluid I will need a further operation to drain
them. Whilst things were progressing reasonably well during my initial course
of chemotherapy I was pretty confident that I would easily smash my urologists
18-month prediction, 8 months in and it’s now looking like it will be quite a
challenge to actually complete the next 10 months, which brings me back the the
cheery subject of death that I wanted to talk about in the first place.
Having thought about
death quite a bit now, I’ve organised my thoughts into 3 areas, the first,
death itself is remarkably easily to cope with, the second, coming to terms
with what I will miss is somewhat harder to accept, and the third, the
bereavement for those I leave behind is by far the hardest to cope with.
I have no fear of
death itself, well certainly no fear of actually being dead. That’s not bravado
or rhetoric, I’ve found plenty of things to worry about since my diagnosis, but
being dead is not one of them. As has been pointed out by many greater thinkers
than me, I never existed for millennia before I was born and it caused me no great
concern at the time, I seriously fail to see why it should cause me any unease
after I die either. I assume however that fear of death must be a concern to a
great many people, after all the world's most tenacious ideologies have drummed
themselves up a lot of business by exploiting this fear. I can see why. If I
seriously believed that life on Earth was the the whim and creation of an
all-powerful supernatural entity, then I could only logically conclude that cancers
that indiscriminately target innocent men, women and children were intelligently
designed by the same hand. The only thing I can think of that’s more horrific
than such a belief is the sickening notion that the self same deity has the
ability to cure such diseases if asked nicely enough, yet is seldom moved
enough to do so. Thank goodness I find such belief systems so utterly ridiculous
that I need not concern myself with their inhumane threats, preposterous fabricated
promises, cognitive dissonance and the unjust judgements.
I can therefore move
on to more real concerns. The one I felt hardest to accept when first given my
terminal diagnosis was the intense frustration at my realisation of what I will
miss out on. I now view old-age not as an inevitability but as a prized privilege
that I will be denied. I so wanted to see my children graduate from university,
I wanted to see their careers take off, I wanted to grow old with my wife, I
wanted to enjoy my retirement and take the long holidays I have been too busy
to take up until now. Most of all, bizarre as it sounds, I wanted to be a Grandad,
I wanted to push my grandchildren around in the garden in my wheelbarrow, I
wanted to take them down to the river to see the swans, I wanted to take them
on picnics in the woods behind my house. It has taken time to adjust to the fact
that I cannot have these things. But there are many other things I can take great
solace in. My children are incredibly intelligent, rational, organised and driven
people. I do not need to be around to know that they will have great success in
life. I know they will both graduate with strong degrees. I know they will hone
their skills further with postgraduate studies. I know they will have successful
and enjoyable careers and achieve great things in their chosen field. I know
they will choose sensible and successful partners. I know they will have
children when the time is right for them and that they too will give them the
upbringing and opportunities for success that I would have wanted for them. I know
this not because of my parental instincts and desires but by the evidence and
capability I have witnessed in my children. Fifty years may not seem like a
long time to have spent on this Earth but what a fifty years they have been.
The mere chance of existing at all is so fleeting small that I am grateful that
I even had the chance. The fact that my fifty years on this planet coincided
with the release of every Pink Floyd and Led Zeppelin album in the history of the
universe is an immense source of satisfaction to me. I have shared this planet for a period of
time with John Lennon, Douglas Adams, Carl Sagan, Sue Townsend, Leonard Cohen,
Victoria Wood and Lemmy – what are the chances? How can I be anything but
thankful?
So the final area of thought
is the one that is hardest of all to come to terms with because it’s the one
that doesn’t go away after my death. I know I am much loved by my friends and family
and that is something they will need to continue to deal with after I’ve gone.
I know it will be hard for my family but I also know that they will eventually
be able to move on and I know that they will never forget me. I have not been
especially close to my mother for much of my adult life. Fortunately that
changed before my illness and we have been much closer in recent years. As a
parent I can image how distressing it is to lose a child. Our children are
simply not meant to die before us and we are ill equipped to deal with it when
it does happen. I therefore recognise that dying before my mother will be very
hard for her to deal with and I wish I could do more to address this problem.
My wife and I have been together since I was 18 and she was 16, we’ve done everything
together for last 32 years and neither of us had previously given any thought to
a possible future without the other. Alas I fear that it is my wife who has
drawn the short straw having to carry on without me. She is however immensely strong,
capable of anything she puts her mind to and will be supported by great friends.
She will be OK. My father died when I was 15 so I know what its like to lose a
parent early. I know that after an initial unstable period I got my life back
on track and I know that my mind is filled with a myriad of memories of him.
Likewise my children too will not forget me. They are 20 and 19 respectively and
have enough memories of me to last them a lifetime too. Fifty years from now
they will still recall my annoying jokes, my constant need for music, my
insistence on reason and logic and, no doubt, several of my less redeeming features
too. So to my urologist I say 18 months my arse, I will live on for decades yet
in the memories of my friends and most especially my wife and children.
Crispian Jago
