Howard, 71, diagnosed with operable pancreatic cancer, April 2011

Sadly, Howard passed away in January 2017 from a brain haemorrhage.  Our hearts go out to all his friends and family.

Howard tells his story, in his own words, about his diagnosis and subsequent treatment for pancreatic cancer…

Whipple’s op for Pancreatic Cancer gets me back in the saddle

HowardCancer of the pancreas has a much higher profile than when my Dad succumbed in 1984. Perhaps it’s because so much more is being done, perhaps it’s because so many celebrities have survived successful surgery and perhaps it’s because more surgeons are now specialising in what used to be ‘shoulder-shrugging’, unpopular surgery.

My alert came when my pee suddenly turned the colour of builders’ tea. Urgent tests revealed sinister cells in a blocked bile duct and the neck of my pancreas. Three months on, after a successful Whipple’s procedure, exercise and a careful initial diet I’m back on my bike and feeling terrific.

Luckily I live near Guildford where one of the country’s Centres of Excellence has a proud record of success in the surgical treatment of the disease. I am equally proud to be one of its statistics. This is how it went.

I’d only called at the Health Centre for a specimen bottle.

“What do you want it for?” barked the receptionist in true Gestapo-style when interrogating patients.

Several smart replies sprung to mind, not least “gin and tonic” but I decided against the smart ass.  “My pee’s turned dark brown and I thought I’d…”  My explanation was drowned by her sudden excited panic.

“Oooo, you must see a doctor straight away. Can you come back in an hour?” I suppose so.

‘Crikey’, I thought. ‘What can be serious about dark pee?’  After all it was a hot day… I was perspiring more…and had enjoyed a fair few slurps of fizz to celebrate yesterday’s Royal Nuptials. Perhaps a bottle had been off. How wrong could I have been?

I returned an hour later to be swiftly diagnosed as being jaundiced. In the next two weeks I had scans, tests and more scans which confirmed cancer in the bile duct and the neck of the pancreas. During one of the ‘goboscopies’ (my word! meaning endoscopy) a stent was inserted to clear the blocked and distended bile duct. I felt better but the experts decided a Whipple’s procedure would sort me out. And it has.

Quite simply, a Whipple’s procedure is where the affected neck of the pancreas, the gall bladder, the biliary duct, part of the duodenum and if necessary part of the stomach are removed and realigned so that digestion will work nearly normally.

It’s a major job which has never been popular with surgeons specialising in the gastro tract because of the inaccessibility of the pancreas, which lies behind the stomach. Not only are substantial bits of one’s innards removed but it is also a serious re-stitching job to daunt even the most enthusiastic member of the W.I.

Today, as I type, my recollections of the discomfort of this major abdominal surgery, the inconvenience, the lack of sleep and the inability to read or to concentrate are fading just like the king size scar across my tummy.

I don’t remember ever having been in pain but I do know that extra helpings of patience were necessary to get me through such an extensive restyling of my guts.

I shall never forget the support of my wife Heather and the uplifting ‘Get Well’ cards and visits from friends.

Now, some months after my brown pee had set the alarm bells ringing I feel surprisingly chipper. Having taken nutrients through a tube up my nose for ten weeks with nothing else but water by mouth, I’m two and a half stone lighter and back in a world where clothes are a surprisingly better fit and my wife’s delicious cooking has to be enjoyed albeit sparingly.

The reality hit home

The process of diagnosis between the experts didn’t take long. The gastro radiographer who carried out the first ‘goboscopy’ (endoscopy) and inserted the stent recommended the Whipples procedure in a letter to the surgeon. We received a copy and the reality began to hit home. It sounded serious so we looked it up… and shouldn’t have done as the ‘interweb’ confirmed it as ‘major’ and gave comparisons and survival rates! Oh dear. Destabilising to say the least.

There were no histrionics or tearful wailings but because I had felt so much better after the stent had been inserted and the blockage cleared we had felt that the problem was ‘done and dusted’. But the diagnosis and the information from the Web  suddenly gave life a new and unknown dimension… and much moreso for my wife.

What I mean is that I possess the blessed good fortune of being able to tackle the serious medical challenges I’ve had to face over the years as if they’re happening to someone else. I step back and look in. I don’t want to get involved. Leave it to the experts and how they are!

Cowardice some might think but at 70 I now reason that it’s a personal protection mechanism that kicks in at times of medical crisis. I just go with the flow and let the devil take the hindmost…

I rock up for all the tests… grin at the KY smearings on my belly before the ultrasound scan… pedal like hell until I’m really puffing in the ticker test…smile as another nurse alerts me to a “quick prick” now she’s found the vein… lie awkwardly on cold x-ray surfaces … and penultimately, as basement air cools my cheeks as I’m trollied into the all-enveloping, drifting, dreamy, gentle mercies of the smiling anaesthetist in the highest of high-tech departments.

My faith is now completely and comprehensively, ultimately and utterly in the minds and dextrous talents of the experts… the anaesthetist, the surgeon, the theatre staff… the nurses in Intensive Care… the physios… the dieticians. Let them get on with what has to be done. I’ve already decided. I’ll watch!

Is that a positive approach? I’m not sure. But I do know that as the reality of the hammer blow sinks in a repositioning of the psyche is essential because from hereon in things are never going to be the same again.

And so it’s proved after the tests at Guildford’s Centre of Excellence and my first meeting with Neville Menezes the diminutive surgeon from Goa. I asked questions as though they were on behalf of ‘somebody else’. He provided the answers and the reassurance. I listened, felt confident but never particularly involved. We shook hands. His are small and delicate. Sensitive. Perfect, I thought, for the precision required to replumb my innards in the serious ‘knife and needlework’ procedure first pioneered by Mr Whipple in 1927.

Attachments

After nine hours in theatre I came round in the hushed environment of the High Dependency Unit (HDU). Heather, my ‘current’ wife as I always introduce her, was there looking anxious. Her’s was the short straw. Waiting and wondering while the other half is chopped about can’t be fun but she gave me a big welcoming smile and a gentle kiss.

In HDU everything is done carefully, efficiently but at considerable pace. The nurses work incredibly hard and have seen it all before. Except perhaps for my sense of humour. I gave them all appropriate nicknames which kept their colleagues giggling. Even the forthright Sister took ‘Boadicea’ on the chin with a grin.

After major surgery you can expect to be attached to a number of pipes and tubes. I hadn’t thought of it so they were an irritating surprise when I came round.  The epidural was comfortable and was removed after five days; a feeding tube and an  oxygen pipe disappeared up my nose and a saline drip into an arm were all suspended on a mobile stand. Each feed bag lasted about four hours and the saline was topped up regularly. The drain bags from pipes either end of the 18 inch wound across my tummy had to be emptied twice a day and my catheter bag was also changed regularly of course, so together with the normal blood pressure check three or four times a day I wasn’t left alone for long.

My other ‘attachments’ were to a life-saving lo-tech ‘Hug Me’ cushion which I pressed against my tum when coughing up any nasties to prevent a chest infection. I was also never without my DVT compression tights which presented a daily battle to pull on over my ridiculously high insteps.

Despite this constant professional attention I was soon at risk of getting bored: My eyesight had gone ‘wonky’ and I couldn’t read, couldn’t write or watch Wimbledon on TV. On top of these I couldn’t concentrate and couldn’t sleep.

My moods rose and dived and I had little control of my bodily functions – the liquid side of things anyway – which was extremely demeaning after the catheter was removed..

My very worst experience was, I suppose, when the cocktail of drugs and the anaesthetic combined to produce some scarey hallucinations: for a while I was fighting the Taliban in an underground car park in Kabul before it morphed into a day’s swan- upping on the Thames before inexplicably segueing into the dramatic Scottish theatre of ‘Addressing the Haggis’.. Don’t ask! I can’t explain any of it except to admit that for however long it lasted, I was right out of it but apparently seriously grumpy!

The marvellously solicitous and patient nurses had seen it all before of course, and repeatedly told me everything was quite normal and only to be expected after what I’d been through!

Wobbly pins

Physiotherapists, bless their bulky biceps, loomed all too early but successfully launched me onto a wobbly pair of pins only two days after my op insisting that the exercise would do me good. It wasn’t long before my confidence grew and I was soon happily pacing the corridors of the surgical floor with my wife on one arm and my ‘constant companion’ – my drip tree on the other!

This essential stand on wheels, had to be with me all the while it pumped its ersatz food into my abdomen. Together, its tubes were a serious handicap to pace and manoeuvrability. Perambulation had to be sedate and before lowering oneself onto the loo for example, the pipes were only prevented from tangling, by a careful anticlockwise pirouette! Despite all this, the benefits of the exercise were noticeable with every lap.

Even sitting in a chair was an achievement to be ticked off in those early stages as was the ease of getting up and the difficulty experienced returning to bed. These simple human manoeuvres all mattered. Small daily improvements showed I was getting there and to help lift my mood I was encouraged to remember each accomplishment.

The trouble was that as they all became easier, they became less significant and I discovered I was at risk of replacing the pleasure of these minor successes with boredom. I had been warned that the second week was the worst and so it proved. Strangely, for me who had never experienced anything bordering on depression, I was close to tears. I was down and the black cloud just wouldn’t lift. A walk propelling my constant companion had lifted my spirits only yesterday but today… no chance!

The reassurance from the consultant, the nurses and my wife, who all insisted that it was entirely normal helped a tad, but reluctantly I just had to be patient. They were all right because it did pass.

No food

For the entire five weeks shackled to the drip stand I ate virtually nothing. I lost nearly three stones. I was never in pain. The nursing care was superb. Mr Menezes was as solicitous and concerned as if I was his first ever customer for this complex procedure, whereas he had carried out scores before. He even prised himself away from a family barbecue in his jeans to check the rate of a leak from a drain. I appreciated not only his expertise and dexterity but his post operative attention. It was good to see the main man at times regularly and always with a smile.

After three weeks of steady progress I was to be released with my feeding tube still up my nose. This was because the ‘east’ drain was still not quite dry and proper food would have to pass by new stitching and hinder the healing at the joint between the pancreas and duodenum. So for 20 hours a day I was to be manacled to ‘pipe and pump’ but it sure wasn’t going to let it stop me having some fun.

Some months earlier we had booked to see ‘Singin in the Rain’ at Chichester with two chums and there was no way I was going to miss it. Mr Menezes sanctioned the outing, so my constant companion had to come too and I took great delight in marching into the auditorium clutching the stand with the less than flattering tube up my nose. The marvellous production was the tonic I needed but it proved quite tiring.

I had to rest up for most of the following day and check on the diminishing dribble into the last drain bag. Thankfully, it was dry on the Friday evening and the pipe was withdrawn. A bag was stuck over the hole and that too was dry by Saturday night so I was able to have the metre-and-a-bit long feeding tube withdrawn from, it seemed, somewhere close to my knees, the following morning. I was at last able to reacquaint myself with some decent scoff!

At last I was free of attachments. Now I had to follow the dietary recommendations of the experts despite the fact that it wasn’t much help to be off to a 70th birthday celebration that afternoon. But ever the good boy, I found myself vigorously stirring the bubbles out of a glass of champagne! No fizzy drinks had been the skinny dietician’s instructions!!!

Footnote!

Only a fortnight after release I was riding my bike to the shops and fit enough, but knackered, to handle a day’s photography at Wentworth and now, as we approach Christmas I’m raking up the apples and acorns and holding myself in readiness for the leaves. I’m very comfortable and looking forward to time with the six grandchildren. Young Joe, who is pictured contentedly dozing on Grandpa’s chest at a family barbecue just after release, was born while I was incarcerated. He certainly raised my spirits when he was brought to the hospital for approval!

The Mongolian Nose Flute visible in the picture unsettled the youngsters but after it was removed I went ‘all soft and silly’ when 4 year-old Charlie gave me a nice kiss and with his arm round my shoulder said, “Good, we’ve got proper Pappa back.” I was pleased to be back too!

Now I’m proud to be a ‘statistic of success’ at the St Luke’s Cancer Centre where, as a contribution to research I’m on a Clinical Chemotherapy trial. Luckily the only side effect I’ve had so far has been sore feet!  Take note!

Howard. November 2011