I should have died six years ago
HOW do some people remain so cheerful in the face of adversity? Ian Ewers is in constant pain from nearly three-dozen tumours and his limping immune system is buoyed by medicine.
HOW do some people remain so cheerful in the face of adversity? Ian Ewers is in constant pain from nearly three-dozen tumours and his limping immune system is buoyed by medicine. He might also have a condition that stops nutrients being absorbed by his body.
Seven years ago, it was a consultant's diligence that flagged the alarming state of Ian's ability to fight infection. “If it wasn't for him, I would be dead.” A drug treatment programme was started; if it didn't work, he was warned, he would be dead within a year.
In recent weeks he's started taking morphine tablets to dull the pain of the tumours - a Rubicon he'd been wary of crossing as he feared it signalled “the start of the end”.
Despite all that, he manages to greet the world with a smile.
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“I keep a happy face and keep going. You have to, really. I'm still alive. I have the philosophy that there's always someone worse off than me.”
One of the things about Dercum's Disease is that you can't tell how much pain a sufferer is in simply by looking at them. “Sometimes people say 'Why is he a bit grumpy today?' and you think 'If only you knew. . . '” laughs Ian, who's 39 and lives in Lowestoft.
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“The morphine has stopped the 'electric shocks', which intensified the pain tremendously. I have what they call bone-ache: the only way to describe it is that I can physically feel the bones aching. It's there all the time - like having a dull toothache everywhere: fingers, predominantly the legs and arms. It exhausts you, incredibly.”
Dercum's is a rare disorder that predominantly afflicts overweight women. The growths apply pressure to the nerves, causing weakness and pain. The cause is unknown, there's no cure, and its impact gets worse as the sufferer grows older.
At the last count, Ian had about 35 tumours. He's got three very large ones on his left leg. A couple of painful growths are developing on his ribcage, which he might have cut out.
He has had eight tumours removed in the past, including seven from his abdomen so he could sleep, but surgery is best avoided if possible: partly because his immune system would find it hard to combat any resulting infection, partly because he reacts badly to anaesthesia, and partly because the tumours tend to grow back.
The growths are tender and painful when establishing themselves; then they develop into a dull ache.
The major risk is a tumour growing in the heart, lungs, or pulmonary system. This can prove fatal.
“I get on. I'm a fighter; I always have been,” Ian says. “Six years ago, I could quite easily have given up, but I haven't. It's becoming harder now. I'm having to rest more than I used to. You just have to get on with life.”
He joined the Royal Air Force in December, 1985, as a fresh-faced 18-year-old. After training as a medic he spent most of his career in Norfolk: at West Raynham and then Coltishall.
He experienced a problem with his nervous system, but seemed to recover. It would be years before that episode would fall into context.
In 1991 Coltishall's Jaguar squadrons were dispatched to the Gulf. At the Norfolk base, Ian was in charge of the dispensary and the medical stores, so he had to ensure all medical packs were complete and that there were stocks for a mass inoculation campaign.
He spent most of Operation Granby - as the British military named the first Gulf war campaign - on standby at RAF Leuchars in Scotland, as well as maintaining the medical centre. Should UK forces have suffered major casualties, personnel would have been brought there.
The following year, his tour of the Falklands coincided with the 10th anniversary of the conflict over the islands. Luckily, there was no fighting, but “I saw quite a bit of action in terms of putting my medical skills to the test. I removed quite a few toenails because of frostbite.
“We had one chap who unfortunately broke his leg. We couldn't get him off the mountain because the weather was very bad and the helicopters couldn't get in. But he had a complicated fracture and it would be about a week before we could get him down.
“I had to carry out a minor op and wire the bone together with sterile wire so it would stay put until we could get him off the mountain. It was all done by telephone! We had very little anaesthetic; it had to be done with local anaesthetic and a very drunk person!”
Later, Ian's health began to deteriorate.
“I'd have episodes where I'd collapse and they thought I'd had a stroke. Then at one point they thought I had MS (multiple sclerosis). But nothing was pinpointed. Then I started developing a weakness down my left side.”
The nature of these unpredictable incidents impacted on his job.
“I had this episode where I'd get this cold feeling down my left side that was like someone pouring iced water. Functions were affected: my speech sometimes became slurred, everything would become disorientated, and therefore they couldn't risk me being in the medical centre on my own. They put it down to post-viral syndrome.”
Hopes of career advancement were stymied by illness, and during a round of defence cuts in the mid-1990s it was suggested he consider redundancy. Ian left the RAF in the spring of 1996.
Fortunately, he'd acquired many skills and managed a nursing home before being headhunted by the British Nursing Association to run a multi-million-pound agency nursing contract at Camden and Islington. After 18 months he was promoted to operations manager for south-east England.
However, health problems reared their head in 1997 when Ian had a stroke at work. He recovered quite well, but was on crutches for some time.
Late in 1999 he began to suffer bad stomach aches. Crohn's, an inflammatory bowel disease, was suspected. A consultant did the expected colonoscopy examinations, but also offered other checks. These showed Ian's immune system had virtually crashed.
“If it wasn't for him, I would be dead.” He started drug therapy. “Basically, if they didn't work, they gave me until Christmas 2000 - a year, maximum. My world fell apart, really.”
Ian went back to work after three months but his cocktail of medicines affected his kidneys and liver. In October 2000, he says, both those close to him and the hospital were urging him to quit for the sake of his health. “As much as I wanted to carry on, I was forced to, really.”
Drug therapy was shoring up his immune system, but he still experienced neurological problems. “It was three years ago when it turned out I had Dercum's Disease - which they think I probably had during my time in the air force and which they think caused the neurological problems.
“I have tumours that grow on the nerves, and basically they're stopping messages passing down. If you get uptight or stressed, you short-circuit - as my consultant at Addenbrooke's says - and you have attacks that shut down your system.”
The last year has effectively been about pain management.
The growths hurt 24 hours a day. “I take morphine now and that doesn't kill it off, but it makes it manageable so I can get up and take my dog for a walk round the block with the aid of a walking stick.”
Those stomach problems have escalated in the last two years, and Ian's being tested for Celiac Disease - a digestive condition that damages the small intestine and affects the absorption of nutrients. Over the last three months he's lost quite a lot of weight.
What's the prognosis?
“No-one can really say. It's down to how the body systems manage.” Drug treatment has kept him going, “but that could stop any day. All I do know is that in the last six months an awful lot has changed, and my worst fear was to be put on to morphine. Mentally-wise, I felt that would be a big step - that would be the start of the end, if that makes any sense.”
Last winter, Ian fulfilled a dream of going to Egypt. The weather was not too hot, but definitely warmer than February in Lowestoft.
“When I came back, I had a check-up at the hospital and everyone said how well I looked. Painkillers, I'd been taking them, but not as many. I was able to do more than what I could do, and it lasted for about two weeks after I got back. And then it all went downhill rapidly. The pain surged in. I became unable to move around very well.”
His medical team mused on this. Perhaps if we could avoid the colder and damper months of a British winter, and return to a warm Suffolk spring, it might help.
Ian set about renting an apartment in southern Spain for almost the whole of next February - a time when he can become virtually housebound back in damp East Anglia. It's something of an experiment. If it works, it could alleviate the symptoms of people with similar conditions.
The trip has been made possible by financial backing from Suffolk Royal British Legion, a respite allowance from Suffolk County Council and help from the Royal Air Force Benevolent Fund.
The Royal British Legion has assisted a number of times in the past: helping him register as a war pensioner, and installing a handrail at a previous home after he had a stroke.
A naturally active person, Ian finds it hard to discover his stamina is not what it was. Luckily, his parents live close by and are very supportive.
“When I go shopping now, my mum comes with me, because I get very tired very quickly.”
He recently went out into the garden and had to admit defeat halfway through a task.
“It got me very down and quite tearful, because I couldn't do it. I had to ring my dad and say 'Could you come and dig this plant up, because I just haven't got the strength to do it.'”
Despite everything, he laughs.
“Brain's 39, body looks 39, but generally I feel incredibly old inside. So we don't know what the future holds. We just live each day as it comes. If it's a bad day, I rest. If it's a good day, I do what I can manage.”
Why a poppy?
THE first donations for artificial poppies were given in Britain on November 11, 1921, and were inspired by Canadian doctor John McCrae's 1915 poem In Flanders' Fields. After the fighting stopped, the only thing that would grow in some places was the poppy.
Moina Michael, an American secretary with the YMCA, was moved by the words. She bought red poppies and sold them to friends to raise money for servicemen. A colleague had the idea of making artificial poppies.
In Britain, infantry officer Major George Howson formed the Disabled Society, to help ex-servicemen and women. He suggested to the Royal British Legion that members of the society could make poppies, and a factory was founded in 1922. Today, more than 70% of factory employees have a disability or chronic illness.
The Royal British Legion's poppy appeal last year raised a record £24.7 million, yet £75m is required to fund its work.
Four million ex-service people have a long-term illness or disability and 927,000 live on an annual household income of £5,000 or less.
There has been only one year (1968) since the Second World War when a British service person has not been killed on active duty.
Donating: Freephone 0845 845 1945. Visit www.poppy.org
We never forget
On the eleventh hour of the eleventh day of the eleventh month in 1918, the First World War ended. November 11 - Armistice Day - remembers all those who gave their lives for freedom.
The Royal British Legion also supports the Remembrance Sunday services (November 12 this year) and the two-minute silence. The parade and service at the Cenotaph in Whitehall is organised by the Government and the Legion.