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Unwell

It’s a normal day in late May. Tom goes off on his bike, as usual, to Sainsbury’s, where he works in the bakery. That night he arrives home with a bad headache. He takes a couple of para­cetamol and thinks no more of it, but the following morning it is still there. He takes some more pills and sets off for work. He gets back later that day and it is worse. What’s more, he is beginning to suffer from double vision. More paracetamol. Annie and I don’t like the look of it and suggest he give work a miss and go to the doctor, but Tom is far too conscientious for that and doesn’t want to let anyone down. By the end of the following day he is really struggling. He not only has a severe headache, barely made tolerable by the painkillers, but the ­double vision has turned into a definite squint. We plead with him to see the doctor but he assures us he will be OK. However, he has a terrible night and the following morning, a Saturday, we finally persuade him to go to the emergency surgery. We run him there in the car and at 9 a.m. we are called in to see the doctor.

As luck would have it, it turns out to be our own GP on duty. He examines Tom carefully, expresses some concern and then rings up and makes an appointment with the Neurology Department at Addenbrooke’s Hospital. We drive straight to Addenbrooke’s. We do not know it yet, but it is a journey we will repeat endlessly over the coming weeks. By 11 a.m. he is being examined by the Neurology Registrar. He thinks it may just be a severe migraine and gives Tom some stronger pain­killers. If it doesn’t clear up we are to return the following week.

Annie has a work trip booked to Colombia for a few days. Tom’s illness doesn’t look serious so off she goes. However, the symptoms do not clear up. They get worse, a lot worse. On top of the severe headaches and double vision Tom starts to vomit. He cannot keep anything down. Eventually he is admitted to hospital, to the neurology ward. They try their best but they cannot control the symptoms. He cannot even keep down the anti-emetics, which are supposed to stop the vomiting.

When he was a baby, in La Paz, Bolivia, Tom contracted salmonella. Whether it was the result of the salmonella itself or the treatment which followed we do not know, but ever since then, whenever he is ill, he always suffers this vomiting reaction. Once it starts he cannot take anything orally, not even water. In South America it was not such a problem, because a lot of drugs are available as anal suppositories and to ‘colocar un suero’ (‘put up a drip’) was seen as a very normal practice. Indeed, people feeling a bit off colour would often go to the local chemist or nursing station and have them set up a dextrose drip, which, temporarily at least, made them feel better. Countries have very different attitudes to the administration of drugs. In France, you often get an injection. In Germany, suppositories are freely available. In England we seem to be keen on taking drugs orally, if at all possible.

We explain to the doctors about Tom’s vomiting reaction and suggest they give him drugs by suppository, injection or drip. They listen, but they do not seem to take on board what we are saying. So they only use injections or a drip when he is in serious danger of becoming dehydrated. Then it’s back to the pills. After a while he starts vomiting again. They give him pills to stop the vomiting, which he immediately vomits up. We beg them to set up a drip or give him an anti-emetic injection, but to no avail. They are decent, caring people, doing their best for Tom, carrying out all the tests under the sun, but they have their way of doing things. On this issue, they fail to listen to us, though it is not for want of our repeating the message: ‘Once he starts vomiting he cannot take anything orally. Honestly. We know. We have been here before. Often.’

Tom is no stranger to illness, even from birth – maybe even before birth. His is a difficult pregnancy and Annie is ill for a good part of it. Then there is a lot of false labour. When, finally, he is born (in Leeds, while we are home on leave from South America) he fails to breathe for some time. I wonder, later, if this is the start of all his problems? Then he has a very bad reaction to a measles jab. When he is six months old, we return to South America, to work in La Paz, Bolivia. Almost immediately he contracts salmonella and is very seriously ill, in hospital for many days, on a drip, unable to keep anything down. He recovers from the infection but his digestive system has been permanently damaged. Diarrhoea and vomiting become normal. He doesn’t absorb his food properly. Despite our best efforts, he ‘fails to thrive’.

A couple of years later we go on holiday to the Yungas, a semi-tropical area, down a dangerous mountain pass, away from the altitude of La Paz, where we live at 12,000 feet above sea level. While we are there Tom is as well as he’d ever been, but on the long, vertiginous road back up the mountain, he turns pale and begins to vomit again. Whatever problems he has are clearly exacerbated by altitude. We need to leave La Paz.

We leave La Paz and head back to England, on leave. Endless tests at Birmingham Children’s Hospital find nothing wrong, so the following spring we return to Bolivia, to Santa Cruz this time, in the lowlands. That’s when the tonsillitis starts. Despite almost continuous antibiotics he has tonsillitis at least once a month. As always, once he becomes ill, the vomiting reaction kicks in.

So life is a struggle for Tom. He struggles to grow – he is always shorter than his mates and, particularly annoying for him, shorter than his younger brother. He struggles academically, which is not picked up, because he is well behaved and not at all disruptive. He just sits quietly at the back and fails to flourish: a typical, middle-class low-flyer.

So Tom is no stranger to ill health. He lies on his hospital bed, continuing to suffer, silently, stoically, doubled up with pain and retching to bring up the last remnants of an already empty stomach. There are endless tests and scans. Endless questions – sometimes intrusive, personal questions – repeating the same information to yet another set of doctors. There are ridiculous questions: ‘Do you regularly inspect your son’s body for moles?’ I mean, for God’s sake, he is 21!

He has been in hospital for several weeks. It is clear that, whatever the problem is, it is serious. The doctors are keen to get him home while they await the results of yet more tests. His symptoms are reasonably controlled and he is not vomiting at the moment. They give us painkillers and anti-emetics to take home. We ask if they can supply them as suppositories but, apparently, they can’t. His sisters, Liz and Jo, have come home from Nottingham and Sheffield. His younger brother, Ben, is still at home. So there are several of us to look after him. Liz is a nurse, which is to prove invaluable in the coming months. However, coming home, for Tom, is not a success. After a couple of days he starts vomiting again. The oral medication is useless. We take him back to Addenbrooke’s. Unfortunately he cannot be admitted straight back on to the neurology ward, so he is kept in A & E for hours, on a trolley, desperately ill. It is an experi­ence neither he, nor we, are keen to repeat.