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I’m more than my Cancer!

This weeks hard-hitting story is from the remarkable Jim. We must do better!

‘As for man, his days are like grass, he flourishes like a flower of the field; the wind blows over it and it is gone, and its place remembers it no more.’ 

So says the psalm of King David. 

It is a poetic summary of the brevity of our worldly existence and one that I keep returning to since I was diagnosed with high-grade metastatic prostate disease (cancer) in the Autumn of 2016 just after my fiftieth birthday. I had a Gleason score of nine and my prognosis was poor: perhaps limited to only a few months. I was also eighteen months away from the conclusion of a thirty year policing career and very much looking forward to a change of direction and perhaps a little golf.  Rather than the smooth transition to retirement that I had planned in my mind’s eye, a car-crash more aptly describes the shock of a terminal cancer diagnosis, and my family were in it with me. 

Aged just 47, I had gone along to the local GP to ask for an examination for prostate cancer. I had no symptoms but went because I was told to. My older brother, Jeremy, a writer for The Spectator, had just been diagnosed with prostate cancer and the advice was that I should be checked too. When a close relative has the disease the risk is significantly raised, given the possibility of genetic factors. (I have since learned that we did not share the BRCA 1/2 gene)

 “You’re too young!” said the young Doctor. 

“You’re fit and healthy and you know the symptoms so don’t worry. Come back if you have symptoms.”

He declined to do a physical examination of my prostate or a PSA (Prostate Specific Antigen) blood test. 

Three years later I was told by the hospital Urologist that had my GP carried out a cheap and simple blood test when I had first presented to him, it would have shown that I had prostate cancer then. 

I didn’t really have symptoms this time, but my wife, Michelle, had noticed that I was getting up in the night for a wee whilst on holiday in Rome for my fiftieth birthday.

As with most cancers, early diagnosis is crucial and life expectancy is reduced when the cancer is allowed to metastasise – that is to spread outside the prostate. 

Mine had spread to lymph, hip, spine and ribs. 

There is much debate about the accuracy and value of the PSA blood test. 

Since my diagnosis it has been made available to men over fifty upon request to their GP but there is still much resistance to providing it. 

Charities and even football clubs like Burnley FC have staged free testing events but the NHS is still reticent to do them. 

I perhaps found a reason for this when a Prostate Cancer clinical review paper came into my possession. It read as follows:

‘Epidemiologic evidence indicates that the most effective way to reduce prostate cancer incidence is to decrease testing.’

Now I’m no epidemiologist but if I, as a copper had decided to reduce crime by staying in the station and not feeling any collars, I think it wouldn’t have gone down too well with the public. 

We used to call lazy police officers “The Olympic torch”- because like the Olympic torch, they never went out- but that’s another story. 

I am being flippant, and I understand that the PSA test can be unreliable at lower levels and that further investigation might be damaging and unnecessary worrying for some men, but in my seven years of treatment and trials it was the most accurate barometer of treatment success and the suppression or growth of tumours that my oncologists had. 

I appeal to the NHS for easier access to testing for men – even routine testing- and notice that many prostate cancer diagnoses are now in men well under fifty. 

Prostate cancer is driven by the male hormone Testosterone. Once diagnosed by a biopsy of the prostate, a rather unpleasant but mercifully short procedure, hormone treatment begins to remove the Testosterone on which the cancer feeds. 

For a man, particularly a relatively young man, this can be devastating in itself. 

During an Immunotherapy trial I had to fill in a questionnaire every three weeks along with several blood tests. 

It asked me, on a scale of one to ten how much I felt like a man. 

My response varied considerably each time, as Testosterone and the medications used to suppress it are emasculating. I felt that even sex-offenders aren’t castrated in this manner and it felt particularly unfair.

As a rugby playing, judo black-belt and Public Order specialist who tends towards the more masculine end of the personality spectrum, I found this aspect of treatment particularly difficult- perhaps even worse than the thought of death.

I have adjusted my views on this over time and in some ways it is also a blessing. 

Prostate cancer is soon to take over as the biggest killer of men so it is crucial that we do something for men’s cancers such as this. 

I have alluded to the trauma of a cancer diagnosis, and this applies to all cancers. 

A cancer diagnosis has the power to take a life but also to change it. 

Just as we are all different, we and those around us, all react differently. 

The psychological effects of diagnosis are often underestimated and it can feel that one is left to cope alone. 

My sister’s friend of many years, Rick, died recently of pancreatic cancer. He received his terminal diagnosis in a matter of fact way and was left alone in a side room to await a counsellor. He waited for an hour and left the hospital alone and in bits. There are so many things that we could change for the better in this regard. 

In the past 7 years I have known friends to succumb quickly to cancer who were very fit and healthy, and others who reacted in a myriad of different ways. There’s no easy formula, of course.

Some turn to drink or excessive exercise. Some become depressed whilst others are euphoric and throw themselves into work or home improvements. 

Even though my brother and I shared the same genes and the same cancer, our cancers and our reactions were very different. 

I was fortunate that we shared a sense of humour and a brotherly love that allowed us to make some sense of the situation in which we found ourselves. 

My brother told me a joke about going to see his doctor and he asked the chap how long he had to live. 

“Ten” said the doc. 

“Ten what? Years? Months?” He implored. 

“Ten-nine-eight-seven-six…”.

 We both laughed at that. I told him that I had laid in bed and folded my arms across my chest, imagining what I would look like in a coffin. He laughed at my tongue in cheek demonstration and peaceful countenance. 

Gallows humour is a feature of policing that helps us to deal with trauma. 

One Police Officer friend, after a prostatectomy described his nether regions as an ‘ornamental vegetable garden!  Sometimes laughter is the best medicine. 

When I returned to work after early Chemotherapy, I was met with sniggering faces as I returned to my desk. 

It was festooned with fake cobwebs and plastic spiders and I noticed that lots had been drawn for my meagre possessions and post-it notes attached to them with the names of the winners attached in the event of my untimely demise. 

My coffee machine, my buffalo jacket, even a picture of my daughter had names attached to them. 

I laughed most at the note attached to my West Ham United mug, which simply read, ‘BIN’.

I loved the lads for that. 

You can’t imagine how some people react when you tell them that you have cancer: they hide away and shun you as a leper. 

I have discovered through my own experience as well at the experience of others, that a cancer diagnosis is most difficult for those who are closest to us. 

I took my diagnosis on the chin and turned back to my faith in God. 

I became almost euphoric. 

When one realises that time is short, there is a weighing of the life, and a review that takes place. One hears of this phenomenon happening in an instant for those undergoing near death experiences, but after a terminal cancer diagnosis the same thing happens much slower. 

In the dawning realisation of one’s mortality, colours seem to burn all the brighter. I began to savour sunsets and the sweet smell of cut grass or the pungent scent of a rose. 

The micro- world that often passes unnoticed came into sharp focus. 

All senses were amplified and I rediscovered the wonder of the world  as if discovering it for the first time and with almost childlike innocence. 

Things that once seemed important were now trivial and the things that are really important took up their rightful place, centre stage. 

The same reevaluation of life came for many, during the covid pandemic, but such is our fickle nature that they are now being forgotten again. 

As I experienced this epiphany the simultaneous effects of the awful news on my wife and children was devastating. 

No wonder that they could not understand my reaction, not I theirs; we were poles apart. 

I hope that in reading this, you may begin to understand the nature of these things or recognise them in yourself. 

Family members, especially children, can become distant. I think that the thought of losing someone we love, and being helpless to rescue them can cause friction in different ways. It can lead to stress and anger as well as a loved one becoming remote or appearing uncaring. This is surely a self-preservation mechanism, though I’m no expert in psychology. 

I felt no need for counselling as I was happy to get on with living and to try and remove the dreaded thoughts from my mind. My wife, however thought she might benefit from talking it through with someone without skin in the game. 

I had been put in touch with the local Macmillan cancer services and contacted them to see if I could book Michelle in for some sessions. 

“Sorry the counselling sessions are only for the patient not the family,” said the voice on the other end of the line. 

“Yes, but I’m the patient and it would really help ME if my wife could have my sessions instead,” I protested. 

Needless to say, no help was forthcoming and it is only recently, at the end of my cancer journey, that help has been offered by our local palliative care hospice. 

Another aspect of cancer diagnosis is the need for financial help. Even holiday insurance can become significantly more expensive. 

The local Macmillan services  could not provide any advice at all. Whilst I did not need assistance, I knew others who did. 

During Chemotherapy, I met a poor single parent with sepsis who was struggling to get treatment whilst sorting out who would pick the kids up from school and worrying how to pay the bills whilst she was unable to work. I told her how to get help but felt that this should have been forthcoming from others whose job it was to assist in these circumstances.

 

We have known others who were self-employed and struggling financially and who also were not given any help or advice. Some friendly advice from my wife, Michelle allowed some much needed relief to their circumstances but this should be available to all. 

There is help out there and it should not be too difficult for cancer services to provide sound and consistent advice. The TV adverts tell me that they do. 

Our own experience was somewhat disappointing. 

Being referred to the local Macmillan services by the hospital, Michelle and I thought that we’d attend to see what was on offer.

“You could have a massage or some Reiki,” said the lady as we took our seats. 

“What’s Reiki?” I said.She explained it was something to do with “moving energy.”“Ok we’ll take one of those please.”

Unfortunately. it transpired that the girl who does it was on an extended holiday in Australia and neither massage or Reiki was available until January when I began my Chemotherapy. 

She left the room and returned with two ‘relaxation’ CDs.

“Don’t listen to the first two tracks as they’re about something else,” she said as she handed them over.

“I don’t think we’ve got a CD player,”

I said, handing them back. 

Finally we were each offered a stone from a small wicker basket. Our tormentor picked one up and ran her thumb and forefinger over its surface. “You feel the smoothness of the stone in your hands, and feel present in that moment- would you like one?”

I don’t mean to sound ungrateful, but a badly copied relaxation CD and rubbing a stone doesn’t really hit the spot when your life has just been torn apart.  

It did give us much to laugh about on the way home, even if the comedy was unintentional. 

My brother died in May of last year and I will not be very far behind him. 

Two of my neighbours recently died of cancer and another was diagnosed during covid. 

Cancer is no longer a rarity but the norm. I suspect that no one reading this will not have been affected by it in some way. 

Mindset is an important part of living with a cancer diagnosis. 

Cancer treatment can be a hard slog, just like a 30 year policing career, requiring no small degree of resilience, both mental and physical. 

I have often been commended for having a positive mindset and getting on with my life. I’m not so sure it is all my own doing. We all need support. 

The second half of the psalm I quoted at the beginning of this article is about trusting God. That is certainly where my strength has come from. I have a strong faith. 

It is good to look outside of ourselves; to look up and away from the circumstances of life over which we have little control. 

Our attitude is something that we can control and I simply chose joy over despondency; life over death. 

Accepting the inevitable, yes, but also determined to live what remains in the right way.  I don’t want to die with any regrets. 

I know that we don’t all have faith, but accepting support in whatever form it takes is important. 

Having someone nearby who understands something of your difficulty is far better than trying to go it alone, however strong you think you are. 

And there is no shortage of people out there who have felt exactly as you do. 

I never felt the need for support groups, but I have plenty of friends who have, and have benefited greatly from them. 

My point is that no one should suffer alone or believe that they have to deal with a cancer diagnosis in isolation. 

I have found my journey a difficult one. There have been high mountains and deep valleys. I have often had to fight to be heard or to get help. I don’t want to go into detail about my complaints but I often feel for those people who cannot speak up for themselves or do not have the same support network that is my privilege. 

I follow an ex-director of World Health Organisation Cancer Services, Professor Karol Sikora on social media who just this week said the following about cancer services in this country: 

‘Major new research outlining just how far behind British cancer care is falling…

Waiting longer, getting poorer treatment and losing many life-years as a result.

British cancer patients deserve so much better…’

It is true that there are many wonderful people, both professionals and volunteers who support cancer patients and I don’t want to sound disheartening. We need you all and more than ever. 

My own message is a simple one:

To those who are suffering from cancer or supporting a loved one- you are not alone. Speak to someone and accept help. 

To those in the NHS and in cancer services and who are responsible for funding and delivery, I echo the words of professor Sikora: We must do better.

Jim Lewis-Clarke. 

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