Open Writing

James is finally cleared to start wearing his artificial leg again, eight weeks after his surgery. It's a painful process, as he has to build up calluses where people don't normally have them and his leg muscles haven't been used for so long they are terribly weak. Like any teenager, James resists listening to advice from adults and hasn't been doing the exercises or wearing the shrink stocking designed to prepare his stump. He also finds it tedious having to build up his strength by wearing the prosthesis for gradually longer periods of time each day.

A week after he starts using it they take it off him, again. Seemingly, the end of his bone has become attached to the muscle and is causing him a lot of pain. The doctor decides that James needs a different kind of prosthesis. He has to push his stump into the old socket but would be pulled into the new one. With massage and some sort of ultra-sonic pulsar machine, they manage to free the muscle again. James doesn't like the new leg because it makes embarrassing wind noises from time to time, when he sits down, but hopefully it will only be temporary.

We go to pick the new leg up and discover James' hip is swollen. With alarm bells ringing, we rush back to oncology. Nothing is found and eventually the swelling goes back down. We'd been told, in October, that the sooner amputees can start using their prosthesis the better. The longer they're without, the stump bone thins, muscles atrophy and the other joints begin to twist to compensate for the shift in weight bearing, bringing risk of permanent damage. Finally, by the middle of March, James begins to use his leg, nearly five months after the amputation.

Two weeks later, it's the Easter holidays. Monday is glorious. Howard works in his garden all day and I enjoy a twelve-mile walk with friends. We flop into bed early and sink quickly into blissful sleep.

A heart-piercing scream wakes us in the still dark of deep night. We find James in a crumpled heap, shivering uncontrollably and panting very rapidly. We cover him and, stamping down our own panic, try to keep him calm. The ambulance seems to take ages but actually arrives quickly.

Getting up in the night to use the toilet, James had slipped. He'd twisted round, tried to grab the towel rail, which broke under his weight and fell awkwardly on his stump.

The doctor in casualty tells Howard that the hip is broken and will probably need to be pinned; the alternative is six weeks in hospital, in bed. James is admitted and Howard comes home.

I arrive early the next day in order to be present when the doctors do their rounds. Two 'under-doctors' appear and stand between James and I, with their backs to me, and seem unable or unwilling to answer any of my questions. I'm told the consultant will arrive about 1 pm so Howard comes to hear what he has to say, as well.

This slim, greying man steams into the room, white coat billowing with his minions in his wake, and announces that pinning is no good for amputees. He orders more x-rays, makes a comment about James having two good arms and a good leg so he'll be OK. Once mobility is determined and pain relief under control, he can go home, we're told. Unfortunately, the consultant doesn't want to explain what he means or answer any questions and promptly disappears. We wait all day and at teatime we're told the x-ray department can't fit us in so we'll have to wait until tomorrow.

At least James seems to be all right. On Monday night he'd been veiy upset that something else had happened to him but he's back to his old self again. He's on morphine for the pain, which makes him very sleepy, but he seems to move about the bed fairly comfortably.

The next day, we're summoned to x-ray at 9 am only to be met by the man who'd taken the x-rays on Monday night. He spends forty minutes trying to find out why James needs more pictures of the same area. I tell him I certainly don't want James exposed to any more radiation than is absolutely necessary. We decide not to have the x-rays done and return to the ward. Late in the afternoon the nurse tells us that the consultant will be in theatre all day and might come to see us around 5 pm if his operation doesn't run over.

I'm feeling quite angry and frustrated by this time. We're used to consultants who go out of their way to talk to us, answer our questions and involve us in decisions. As a parent, I need to know what we should be doing. Will James be bed-ridden for weeks or should we organise physiotherapy? Is it safe to take him swimming and would that help strengthen his muscles? How soon can we expect him to be able to use his artificial leg again? What will the pain management involve, when will James be able to switch to over-the-counter type relief? Are they giving him anything to prevent constipation? When will it be safe for him to return to school? I have lots of basic questions. I phone James' doctors at the other hospitals, to try to get some information, and they are as helpful as they are able to be without access to James or his medical notes.

Later, our brilliant friend, Pat, drops in to visit us. She just happens to be a member of the Community Health Council, a voluntary organisation of professional people that act as a watchdog for the health service. I let off steam about our experiences, amongst other things, and then she leaves to return to work. Shortly afterwards, the nurse rushes in to say the consultant is on his way. Pat had gone directly to the hospital administrator and the consultant's secretary, to complain about our treatment.

He is not pleased that the x-rays haven't been taken, nor I suspect that he'd been expected to see us. I have to follow him out of the room to try to get him to answer all of my questions. He tells me his junior doctor will look at the x-rays and, if they're OK, we can go. The x-ray department stays open an extra 15 minutes and rushes us right through.

The younger doctor is much nicer this time and shows us the pictures, talks us through the situation and explains what's going on. James has a spiral crack just below the sticky-out bits at the top of his femur. Being an amputee, there is nothing pulling on the bone and he isn't putting any weight through it so they hope an operation won't be necessary. He has to be very careful and they will check in two weeks to make sure the crack isn't spreading. Hopefully, it'll mend by itself. Thanks to Pat, we're home by Wednesday night with a clearer idea of what we should be doing and what to expect. The only difficulty is James' inability to comprehend the words 'rest' and 'careful'.

*

My son inherited these qualities from his granddad. When James was a baby, Howard's dad suffered a serious heart attack, which meant that he couldn't drive and was invalided off work. Heart disease was a feature of the family; Geoffrey had already lost two brothers to it. He'd been made redundant in the past, worked at a number of jobs and in his late fifties was a progress chaser in a local factory. Unemployment at that time was very high and he and his colleagues had lived under the constant threat of redundancy over a number of years. His vegetarian, non-smoking, teetotal lifestyle and low weight all helped him to live longer than his brothers but I believe it was that extra anxiety that pushed his heart beyond the limit.

Geoffrey was useless at being an invalid. Against medical advice and in the face of his family's anguish, he was soon steaming through life at nearly full blast. Gently, he helped each of us to understand that it wasn't quantity of life that was important but the quality. He had to be the person we loved and we couldn't deny him that. So we just held our breath when he went to entertain at a children's birthday party, took a part in a play or sped off on some other project.