A slightly different version of today's post also appears in the Guardian's online Society section.
I remember the moment with utter clarity. Where I was
sitting, what I was doing, and what I was looking at. My consultant had called
with the results of my third biopsy. It was positive. They had found 3 cancers
in the prostate.
This had been a long journey and I should have been
prepared; but I wasn't. Of course, I had been one of those people who always
said that "cancer" shouldn't be such a dangerous topic that we don't
talk about it. The reality is we all know of people who have died of cancer and
despite all the many advances in research it still is a major killer.
Despite all the actual evidence of my own case it was
difficult not becoming morbid; thinking of the music for one's Requiem (Faure
or Mozart?)for example . However, my partner soon put paid to such nonsense
when I got home, and what better occasion than to remember the advice of
Churchill as I opened a bottle of fine champagne; "in victory we deserve
it, in defeat we need it".
I had decided to have a PSA test, which detects the
possibility of prostate cancer, back in January last year. I was surprised when
I was asked in to see my Doctor to be told the reading was over 18 – far higher
than would normally be expected for my age. So, I was referred immediately to
the Churchill hospital in Oxford for tests, and thus began seven months of
scans and biopsies. Biopsies are not great fun and the final one was under
general anaesthetic.
The problem for me was that whilst the PSA results were very
high, and climbing, they couldn't locate any tumours. When they did, they were
quite small. There is a problem with the current state of medical
knowledge on this particular cancer, it is thought that most men in their 80’s
will have prostate cancer, but the majority will never have symptoms and not
die of it. Yet every year some 10,000 men do die.
The medical advice was less than clear-cut on my own
diagnosis and so for three months I convinced myself that I could keep this
under surveillance and avoid treatment. The main forms are to have the prostate
cut out or eight weeks of radiotherapy, the side effects (not to be detailed in
a family blog) can be serious for ones quality of life.
In the end, I organised a second opinion. I had the Oxford
Prof's view so I went to see his opposite number in Cambridge, Prof Neal. He is
currently undertaking a research project to trial new improved PSA tests. I
think it was this chat that finally moved me to deciding I would have
treatment. Amusingly my decision was rather confirmed at a Health Service
Journal dinner when I found myself sitting next to Norman Williams, the
President of the Royal College of Surgeons. Doctors and consultants are rightly
guarded at telling you what decisions you should make on your own health but
having outlined my own dilemma he said if he was in a similar position he would
probably go for treatment. It was reassuring and helpful Norman.
In my case I was fortunate to be in the category of people
who can have brachytherapy, a relatively recent treatment imported from the
States. So on April 29th this year I was admitted to the Royal Berkshire at
Reading and in a three-hour operation, I had 66 radioactive seeds (flown in from
the States no less) inserted into my prostate. I was lucky to have an
understanding Board at ACEVO who agreed to me taking a two month
"sabbatical" to recover. I was not then ready to be very open about
my cancer.
So, its 6 months on. I'm still radioactive; if you are
pregnant or a baby you should not sit on my lap, but otherwise feel free. I
have off days, but the good news is that the cancers have been zapped. My PSA
is back to normal and It has not spread.
Why speak up now ? I can look back at the experience
with more detachment and I feel confident in talking about it, and what better
time than the start of "Movember ", when Prostate CancerUK and
the Movember Foundation
work to raise awareness of this disease. I spoke to Owen Sharp, Prostate Cancer
UK CEO and ACEVO member who was keen I talk about it as they need men to be
more aware of the problem. So, hence this Blog.
The journey has been difficult. Looking back, I can remember
the dark days. Somehow, this thing lurked in the back of my mind. Looking too
much at all the stuff on the internet did not help. I'd go to bed thinking the
worst. I suspect having a strong sense of humour and sense of purpose kept me
strong. Being the third sector's leading voice made me more determined
not to falter or retreat in the face of this new obstacle.
It is at times like this you realise how important the NHS
is. The quality and standard of care for cancer patients is superb. The advice
and support I got at the Churchill, especially from the Prof Hambdy, my
consultant, and Rose Southby, and the cancer nurse, was an important part of my
recovery journey and its good to be able to publicly thank them here. .
We should also not forget the crucial work of the cancer
charities. I had lots of help from both Prostate Cancer UK and Ciaran Devan at
Macmillan Cancer Care and his team. The work they do on research,
campaigning and support for people with cancer makes all the difference, and
the amount of research now going on into new and more effective forms of
treatment for prostate cancer is breath taking in its scope. However, more
needs to be done and so fundraising is crucial in this historically underfunded
area.
So "Movember" is an important movement. This
emerged as an idea from two friends chatting in a bar in Melbourne in
2003. They decided to grow a moustache to draw attention to the need for more
research, and they devised rules for growing a “mo" to raise awareness of
prostate cancer, rules still extant today.
This month this movement wants to raise millions to
continue to fund the expansion of research and services for prostate cancer
through their major UK partner Prostate Cancer UK. This is now a global health
movement, with over 1 million people in 21 countries taking part. This deserves
support, although I'm afraid I'm not growing a moustache I am telling my story.
I remember a friend who had had cancer ( a leading third sector CEO ) telling
me I'd one day be surprised when I discovered that I had moved from being
anxious to being simply matter of fact about it all.
And the wider lesson? Well, if I had reached 60 and
even though there were no symptoms, I would be going to the doctor to talk
about having a PSA test. Especially if a new test which could serve as a more
accurate indicator had been rolled out.
The other lesson is to be prepared for any result. Both
Macmillan and Prostate Cancer UK have a lot of literature its worth reading
before a test. I'm glad I had the test, and the treatment because now it’s
sorted. I know they never tell you it’s "cured” and it will be checked but
I'm confident. I celebrated my 61st birthday on Tuesday (fireworks kindly
laid on for me by Lambeth Council in Brockwell Park) I will be celebrating many
more.
The final lesson? Support Movember and
let us ensure more research into causes and treatment for prostate cancer.
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