Facing cancer: the biggest challenge of all

I passed one of those markers in time in January, this year. My brother too. One of those times when you look again at the faded monochrome photos you’ve had framed and propped by your desk, or stuffed into musty old albums, dog-eared edges straying from their black photo mounts. And I mean really look, desperately trying to see them now, animated and smiling. Alive. In colour.

There’s one of me, perched on a chest of drawers. My very early twenty-something mum, face still unlined and freckled (the best looking mum at the school gate), leans into me, smiling at the camera. My dad too, handsome and tall, hair slicked with Brylcreem. And for some inexplicable reason, I am holding a bottle of Gordon’s gin.

Forty years. Forty long years since we lost him to bowel cancer, at just 53. And it made me think. He wasn’t even told he was terminally ill. Doctors and nurses spoke in hushed tones behind his back. The entire family colluded in not telling him the truth, ‘because it would kill him’. Ironic, eh?

Nobody knows, until it hits them, how they might react on receiving any life-changing diagnosis. And all too often, Life, the Universe, God – who or whatever it is pulling those punches – delivers the knock out blow too soon. But at least – I think, most of the time – you get a chance these days. The chance to make peace with yourself, your family and friends, even those you’ve fought against. The chance to say goodbye. At least you get the chance to fight. The chance to live.

My dad never got that chance.

‘Every four minutes,’ says Cancer Research, ‘someone in the UK dies from cancer’. Overall the numbers have gone up but the ‘big four’ – breast, bowel, lung and prostate cancer – have become less deadly, relatively speaking. Now, according to one friend’s GP, the incidence of rare cancers – such as the one which her husband fought so valiantly for the very few short weeks between diagnosis and death – is increasing.

Sometimes you just can’t dodge that killer punch, even when you know it’s coming. And everyone (everyone I’ve known, at least) fights – however deep their faith that this life isn’t all we have, however sure they are that life goes on behind that veil. They just keep spinning that barrel till it clicks. Often in the face of insurmountable odds. Every one of them an inspiration. Braver and stronger than those around them. Because they have to be.

Take my friend Graeme.

It was 1986 when a young, fresh-faced physiotherapist, new to the St John Street practice of the legendary Freddie Griffiths (Manchester’s physio to the stars), stepped chirpily into the treatment room to assess me. Even then, it was clear he took pride in keeping himself fit, looking after himself, confident in the power of self-discipline in the healing process – characteristics which Fate has tested to their extreme.

We became pals, regularly catching up on the ups and downs of our respective lives over the course of him delivering a pummelling for some drawing board or ski-related twinge or other. That said, I think my favourite diagnosis ever was his assertion that I had undoubtedly contracted a dose of ‘knitter’s neck’. But I digress.

When he set up his own practice, we kept in touch. It was during a catch up there, after a ski tumble trapped my right hand – still inside the glove, still attached to the ski pole – beneath a tangle of my own body weight and my skis. My impatient tug free snapped the ligaments in one of my fingers – now irreparably bent. Yes, ouch!

Anyway, there I was with my swollen finger and Graeme said he had news. I doubt even he realised, just then, what a rollercoaster ride he had climbed aboard.

He remembers well the day he first knew something was wrong: 30 October 2010. A beautiful day. He and his partner Lesley were driving south from Manchester on the M6 for her birthday weekend. He noticed his right eye watering. ‘Perhaps a touch of conjunctivitis,’ he reasoned. ‘Nothing to worry about’. But, without so much as a fanfare, ‘the alien’ had tip-toed into his life.

By December, his eye was still watering, despite the use of over-the-counter eye drops. His GP prescribed antibiotics. But still, no difference.

Later, about to head off skiing for a week and concerned at his now very sore eyes, he popped into A&E at the Manchester Royal Eye Hospital. ‘Blepharitis’, said the doctor. ‘It’s your age’.

Relieved at such a simple explanation, Graeme thanked the doctor and set about a routine of eye drops and daily cleaning of the margins of his eyelids. But, while the redness subsided, the eye watering didn’t.

In January 2011, he returned to A&E, this time sure his tear duct was blocked. ‘Blepharitis,’ they said, again. But a referral, a month later, for a tear duct examination brought scant relief. ‘Probably a blockage and it’s cleared now. You’re discharged’, said the doctor.

Back with another GP, a month later, Graeme’s suggestion that the problem might be linked to his sinuses was brushed aside with, ‘Try this steroid spray for a month’.

So, given the apparent reluctance to refer him anywhere, he took a different tack. How about health check? You know. Just in case.

‘Why? Do you think you’ve got a problem?’ said the doctor. Surely he could take his blood pressure himself? And as for blood tests, she didn’t think that relevant.

A month later, his eye still watering and an even greater feeling of pressure, he noticed a slight gap beginning to form on the inside of his eye, where the eyelids meet, as if a cyst was forming. Determined not to be fobbed off a second time, he wrote to the doctor asking for a referral to ENT.

With what, in hindsight, appears a spectacular lack of urgency, it was two months later when Graeme arrived at Withington Hospital for his appointment with Mr Potoula, an ENT consultant. By then, the swelling had developed towards the nose side of his eye and he had a noticeable pain in his right sinus. Eight months since the alien first made its presence known, a CT scan was ordered.

Used to looking at scans of backs and necks, but not skulls, Graeme could clearly see the black egg-shape mass overlapping his right eye socket. Time for an MRI scan.

‘By now,’ says Graeme, ‘the pain was increasing, my eye was visibly pushing out of my head and I had difficulty breathing through my right nostril.’ But the tumour, said the doctors, was ‘benign’. The relief was palpable. All they had to do was remove it.

By the time that moment came, in August 2012, the pain was really bad. So bad, he says. he would happily have allowed ‘a porter with a knitting needle’ to ‘have a go’.

‘The tumour was growing exponentially, filling my right nasal cavity and deflecting the nasal septum dividing left and right sides of the nose. I looked in the mirror. Using a torch I could see the grey mass, part way up my nostril!’

Mr El-Kholi, the surgeon, was Egyptian. Over the years, Graeme and his colleague Cheryl had looked after many of Mr El-Kholi’s fellow countrymen during the national squash championships, several British Opens and the World Open. Hopefully, that care would now be reciprocated. And sure enough, on coming round from the anaesthetic, the pain had gone, he could breathe more easily and his eye was almost back to its rightful position.

Back to his physiotherapy practice and back on the squash court, life was good again. But two weeks later, back in clinic, Graeme’s world fell apart.

‘I’m afraid the tumour’s malignant.’

Gauntlet thrown, the alien had snarled.

I can’t remember exactly when it was that I walked into Graeme’s clinic with my swollen finger (he will no doubt remember precisely), but I do remember driving home that day with a heavy heart. As he says himself, he ‘ticked none of the boxes’.

And so it was I joined an ever growing band of friends who he has kept informed along every dip and climb of his six-year rollercoaster ride. More recently this has meant the almost constant pinging of the mobile as he updates us all with progress – peppered with his own, thoroughly well-researched tips on keeping well. It’s positively humbling to see the love and regard people have for this man – each and every one there with him, virtually – in spirit, if not physically, ‘riding with the alien’ – his dogged determination an inspiration to us all.

Nasal nitty gritty

If it’s details you’re after, the alien in question was a ‘sinonasal intestinal-type adenocarcinoma’ – cancer of the nasal lining – a cancer so rare, it didn’t even have its own classification. Consequently, it was grouped with the one most like it: intestinal.

There were no secondaries but this single tumour had eaten its way into the shelf of bone supporting his brain and the nasal cavity, and fractured his right eye orbit. They would have to remove the eye. And the facial disfigurement would be such that a prosthetic eye was out of the question.

‘But my eye’s fine,’ he said. ‘I’ve got normal vision’. The consultant remained silent. Unconvinced.

How long would he have without the op? ‘Maybe four weeks for it to fully enter your brain,’ they said. So he went for the op.

The surgeon outlined his plans.

‘An incision would be made through both my eyebrows, crossing the bridge of my nose, down the right side of my nose then under my nose, spreading out to both left and right, where the top of a moustache would be. They would go in through my forehead frontal bone to remove the tumour in its entirety.

‘A portion of the sheet of bone that divides the upper sinus from the brain, the skull base, would be removed, together with the associated layers of tissue surrounding the brain, the dural lining (meninges). The dura would be replaced with fascial tissue from the outside of my thigh, where there is a nice strip to harvest, and secured in place with a plastic and titanium plate. Any tissue the tumour had come into contact with would need removing, including the specialised lining of the nose, the turbinates (bony fins inside the nose that humidify and filter the air) and the nasal septum that divides the left and right sides.’

Immediately after the op, Graeme’s sons Elliot and Sam kept us informed, and the news was good. His eye had been saved. A plastic and titanium plate now supported his right eye, replacing the bony eye orbit – although he still had double vision on the left side. ‘So much so,’ he jests, ‘I didn’t know which of the two tea mugs to go for!’

The good news, however, was short-lived. Problems with his eye persisted. First, they removed the plate – achieved by chomping it into small pieces with cutters and removing it via his nostril. But it wasn’t enough. Hiding behind the right side of his nose, the alien snarled again and, this time, the operation required drastic reconstruction surgery.

Ambitious though it was, that too failed and, in October 2013, Graeme learned that he would, after all, lose his right eye, some of his cheekbone, the reconstructed area of his nose and some brain tissue. There could be no half measures. It was a stark choice: have the surgery or face leaving Lesley and his boys.

For Graeme – who had continued working, playing squash and training for a cycling challenge throughout all this – there was nothing else for it.

‘There could be only one winner,’ he says. But when the neurosurgeon reviewed the scans, declaring the site inoperable, it was another body blow. ‘This alien was more difficult to eradicate than Japanese Knotweed!’

A couple of weeks later, the doctors reversed their decision. They would operate, remove the tumour and fashion a flap of skin across his right eye, nose and cheek. Imagine a huge flesh-coloured sticking plaster, permanently in place, diagonally across the eye and there you have it.

Riding with the Alien

This is the Graeme we now know, the Graeme who appeared on our news screens and across social media, unashamedly – defiantly – promoting the Facing Challenges Together bike ride he undertook with Elliot and Sam. In July 2014, the intrepid cyclists rode the 1370km trip round the highest peaks of England, Wales, Scotland and Ireland – a climb of 4257m – over eleven days. Not bad for a man not long emerged from major surgery.

They called their jaunt ‘Facing Challenges Together’, in not just a nod to Graeme’s own experiences but in celebration of the challenges we all face, in all our lives. And since then, they’ve inspired other people to use their logo, to go off and face their own challenges, do their own things for charity. Any charity.

Their efforts raised over £10,000 for The Christie, a similar sum for Macmillan and £11,000 for the Dallaglio Foundation.

It would have been wrong – and long-winded – of me to tell the story blow by blow here. Graeme did it so well himself in his own book Riding with the Alien, which is still available from Amazon. It’s a harrowing and honest read, packed with the quotidian detail of life with cancer. Indeed, he wrote it to inform fellow sufferers and their families, not for profit.

facingchallengesblog
Left to right: Professor Jarrod Homer, Graeme’s main consultant, Elliot Heward, Graeme Heward and Sam Heward, ready for the off at The Christie © Graeme Heward.  Main image: Group of doctors in a hospital corridor © Sudok1 (Adobe Stock)

By July 2015, he’d had the attention of more than 30 consultants, 40+ scans and 15 operations totalling 46+ hours and the alien was gone. Life returned to normal. Well, as normal as it could be.

And I wish, I so wish, I could say that was the end of it. In October last year, we learned that the rollercoaster was back in action. The alien had returned, nestling behind Graeme’s throat, up close to the base of his skull, close to the major blood vessels supplying his brain. They could neither operate nor irradiate – although this latter news he was grateful for.

‘During my earlier treatment, there were periods,’ he tells me, ‘when I was having radio and chemo together. All I could eat was eggs – boiled or scrambled – and mushroom soup! Anything else, I’d be hopping round the house screaming with the pain in my throat’.

So chemo it was. Three-week cycles of intravenous, then oral, then a week off, during which he played squash and cycled. And, in true Graeme-style, no piece of research, no cookery book, no website remains unturned in the quest to fight this foe.

‘I need to exercise, to promote the feel-good chemicals and oxygenate my blood. Exercise also squidges around your lymph. All my cells are getting this toxicity, so it’s important to clear them. Then there’s ten minutes meditation every morning – something I never thought I’d be doing!’

In fact, he was back playing county squash not long before Christmas. And those days when he sat at The Christie, drip on hand, he was busy texting his band of pals with his own healthy eating tips – his ‘alien unfriendly, immune boosting diet’. The bucketloads of Brussels sprouts and organic baked beans caused quite a stir – and the turmeric with everything. But, believe it or not, he allows himself the occasional glass of Cabernet Sauvignon. And he’s big on juicing.

Recent discussions have included liver flushing with Epsom salts in water – either side of a glass of olive oil mixed with grapefruit juice and four ornithine tablets (an amino acid which plays a part in the urea cycle) – and the merits of garlic cloves as rectal suppositories (only during a full moon, apparently). And, perhaps less upsetting if you’re reading this over breakfast, the joys of looking after Gromit, the family’s recently acquired puppy and ‘cancer distraction’.

And, through all this – despite all this – he always has time to offer encouragement and support to others.

A glimmer of light

A few weeks ago, his scans showed ‘no detectable sign of cancer’, a result he celebrated with vegetable soup and a game of squash. But his regime continues. Nobody can tell whether this particular alien still lurks, bruised and battered, in some dark corner, licking its wounds, regrouping for battle. Constant surveillance is needed. But one thing is certain, this particular alien appears to have met its match.

If his next scan, at the end of March, brings good news, and the alien remains cowed, there’s a better chance Graeme can proceed with forehead, nose and tear duct reconstruction. I can safely say, a lot of fingers are crossed.

And, still in his early fifties, still with the hope of so many more years ahead of him – he is far from bitter about the path his life has taken. Thinking back to those initial consultations, to the months of eye watering dismissed as merely an unfortunate consequence of advancing middle age, he is remarkably phlegmatic, forgiving. Accepting. Would things be different now had the alien been spotted earlier? No point in dwelling on what might have been, he says.

‘Mine was a very unusual and rare tumour. 1 in 100,000. I had symptoms of blepharitis, which may have acted as a red herring. My symptoms had been relatively insignificant – a watering eye. There is nothing to be gained from looking back. I am here now.’

Indeed. Sadly, not everyone gets the chance to fight so long and so hard. Sometimes the battle is just too great. The invading foe too wily. Sometimes too, I guess, you can choose not to fight. But at least, now – most of the time – you do get the chance.

Good luck, my friend. Good luck and long life.

 

 

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