You Have Not a Leg to Stand On (3 page)

Such Unkindness - Blessed Oceans

One awful entity was when my wonderful little wife was found to have breast cancer. To be told you have cancer must be bad enough, but for a woman to be told she has breast cancer, I can only equate with myself being told I would never walk again. Perhaps all husbands think their wives breasts are beautiful but my wife's breasts really are beautiful; the only way I can accurately describe them without being too overt is ‘Page Three.' And now she was being asked to accept, what I can only describe as, mutilation. The cancer was a DCIS, ductal carcinoma in situ, which means it can't be removed without removing the whole breast, as the cancer is within the milk ducts. The surgeon told us he could build a reconstruction at the same time. He gave us the implant to hold and he said he could match the ‘fall' of the other breast, but he couldn't save the nipple as the ducts there would also be carcinogenic. My little wife felt it was imperative she woke up with two breasts.

At this stage, as my wife figures so completely entwined in our lives together, I think I should paint you a picture of how she really is. When I refer to her as ‘My poor little wife', I give you the wrong impression. It's a term of endearment I use to give you the sense of how I feel towards her. How I think I ‘am' imposing upon her, how I ‘hate' myself for being as I am. You might think she's a small, meek and put-upon person. She is neither meek nor small, and I don't think she'd ever describe herself as ‘put upon'. She is a tall, strong, buxom, beautiful Englishwoman with a commanding presence. Her eyes are deep, deep brown with the whites of her eyes showing all around the iris. The irises are so brown they merge into the pupils, giving them a dense depth in which you could get lost forever. Her dark brown eyebrows are set well apart and emphasise her strong features. Her shoulders are broad and strong and her rounded, plump, beautiful breasts have the perfect fall. Her figure is hourglass and her skin is all a soft, pale biscuit colour giving her a natural glow.

She was admitted to the Royal Marsden Hospital in London to have a single mastectomy and reconstruction. She spent a week in hospital, I was with her all day, every day, and although, in great discomfort, all was going to plan. A couple of days after she was discharged, just before her first follow-up appointment, she began to feel unwell, a fever, and yes, the reconstruction had become infected. The whole thing had to be done all over again.

This time, we very nervously wove our way through the next five years of regular checks, when she was finally considered ‘cured.'

Although the new breast was nothing like her own breast, we began to relax, and the whole dreadful episode slowly receded into the background of our everyday thinking.

The new breast had a valve on the side underneath the armpit, which meant the size could be adjusted after the effects of surgery had subsided. When my little wife, after about ten years, became aware of a small lump around the implant, we both felt it was probably the implant showing its age, and needing to be replaced.

If only it were that simple. Not only was the lump cancerous, a CT scan revealed it had metastasized, spread through the lymph system and throughout her lungs. By now we were punch-drunk. We could only listen to the oncologists with their strategy of how they would endeavour to treat it.

The drug therapy she was given immediately has so far been very successful, and reduced the size of the tumours in her lungs from peas to pinpricks. She has a CT scan and ultrasound every four months to follow progress.

So, instead of just sitting at home, nervously waiting for results every four months, we made one of the best decisions we've ever made; to go on a four-month cruise right around the world. Our little ship was called the Saga Ruby. We fell in love with that little ship, its crew and all its passengers. We visited thirty-six different countries over one hundred and fifteen days. As far afield as Tahiti and Bora Bora in the South Pacific and Beijing in the winter in the North Pacific. We walked on the Great Wall of China; my Pusher pushing me along. We wheeled right through the Forbidden City, a sight no one could ever forget, we were driven all about Beijing in a London taxi. We were taken to a Chinese play, where we sat in the audience at our own table, with drinks and little eats, and the actors moved and sang in high staccato. Dramatic and really quite touching.

We were taken to the Temple of Heaven. It was on the way there we had an experience I will always cherish. It's difficult to explain how moving it was. Our London taxi was parked on the edge of one of the few Beijing City parks through which we had to wheel to get to the Temple of Heaven itself. At the bottom of the long flight of steps up, was a large, open-sided, old stone courtyard, with covered stone passages along the sides. It was along these passages that like-minded, elderly Chinese would gather in the late afternoon, in groups of people with similar interests. Playing cards, playing chess, mahjong, discussion, singing, opera or operetta, men and women, all muffled up against the cold. We wandered slowly through them, from group to group, watching or taking photographs. No one took any notice of us; we might as well have been invisible. It wasn't a performance, it was just what they did, every evening, it was beautiful, and I'll never forget it.

At the end of a very long and intriguing, memorable day, we were taken to the most sumptuous hotel imaginable. Then at six o'clock in the morning the following day, without time to enjoy the lovely hotel, we were driven back the hundred miles, to our beautiful ship. Our butler was waiting for us at the cabin door and said, ‘Welcome home.'

***

Another time, a long time before we found our lovely ship, a long time before beginning to find our way again, or even thinking there might be a way again. We were sitting on a blindingly white shimmering beach, overlooking the Indian Ocean, on the Kenyan coast, about a hundred miles south of Mombasa. The tide was at its lowest, you could smell the damp sand and the wet seaweed, and in the distance you could hear the line of white surf crashing on exposed coral reef.

I was in my wheelchair, my wife was on one side and a great friend, whom I'd been at preparatory school with years before, was on the other. He said, ‘Let's go for a swim.' I said, ‘That'll be great when the tide comes in.' He said, ‘No now.' Before I could answer he picked me up in his arms and ran into the shallow water. Instead of putting me down in one of the hundreds of knee-deep little pools, he went on running. My little wife was running behind, she couldn't keep up. We clambered on to the exposed reef. Even Gwynne's knees began to buckle. He charged through the white surf and quickly into the deep blue water. I floated out of his arms, and immediately I could sense the immensity of the Indian Ocean. My legs had already been affected by osteoporosis so it wasn't possible for me to sink. I floated about on my back, stretched my arms up over my head, weightless, I turned over and looked down. I hadn't got goggles on so everything was very blurry, but I could see the reef wall plunge down out of sight. It was stunningly beautiful, little fish darting in and out of the colourful coral. I've always been able to hold my breath for a long time so I just hung there looking down, buffeted about by the small waves on the surface. I felt completely at peace. I wasn't aware of any pain. My body was absorbing energy. I didn't want to take a breath. I wanted to be part of this lovely enticing picture. I don't know how close I was to that moment, that millisecond before the oblivion of the crash. It would be so easy to end this awful struggle we were both yearning to be through. I rolled onto my back and took a deep breath. That experience was a pivotal point in my recovery. In the deep misery we were both suffering, I'd forgotten how much I loved the sea.

Stoke Mandeville

In retrospect, I began to realise it was while at Stoke Mandeville Hospital, I lost my will to live. By the time I arrived, I'd been six weeks in Nairobi Hospital, four weeks in St. Mary's Roehampton and one week with Marriott. No one could possibly have known, going to Stoke Mandeville Hospital, the star of stars for paraplegic rehabilitation, would break my spirit for years to come.

One of the most important things a paraplegic must learn is how to deal with double incontinence. I've explained earlier how I was taught to deal with urine collection and how unsatisfactory it was. So this is some sort of explanation for the far greater difficulty of dealing with the bowels. It's not a subject I really want to dwell on, but if I'm to tell my story at all truthfully, I must explain how awful and how curtailing the lack of bowel control really is. I've never seen it explained. Possibly for the same reason I'm reticent to do so now.

It's all very different now, but when I went to Stoke Mandeville Hospital, the present hospital was a far-off dream. So on arrival I was put into the dreaded 1X Ward, ruled with a rod of iron by Sister Rose. Sister Rose didn't put up with wimps, this was the situation, put up with it and deal with it. She was married to a man who could only move his head. And yet every morning he was up and dressed, bright and breezy, in his electric wheelchair, which he controlled with his chin, visiting people who were down in the dumps. Now, in the modern new hospital, the mattresses patients lie on have little motors to blow them up. This moves the air from place to place, making a ripple effect up and down the body, all to prevent the curse of pressure sores. But in those days we were laid out on four sets of two plump pillows, along the length of the bed. Every two hours, two orderlies and one nurse would come to the bed, the two orderlies picked me up flat in their arms while the nurse turned the pillows over and plumped them up. Then they would lay me down again on my opposite side. The whole ward of thirty beds had to have this procedure performed every two hours, night and day.

Although I was paralysed from the waist down, I couldn't move my top half at all. I couldn't sit up, I couldn't roll over, all I could do was move my arms and my head. This was understood at Stoke but not at Roehampton where dealing with defecation and urination hadn't even been touched upon. So as soon as the turning procedure was done, along came an orderly with a little tray on wheels, who said, ‘How you feel today, fifty percent?' I smiled wryly. ‘I'm going to plumb you up.' I just looked at him, it wasn't an expression I'd associated with myself. He pulled the sheet down, I was naked. He put on a pair of rubber gloves. He took hold of the end of my penis, pulled it straight up in the air and washed it, and my testicles, with a wad of cotton wool and disinfectant. He lay it down on a piece of paper from a roll. Then he opened a little jar which had a brush on the inside of the lid. On the brush was a thick white substance which he proceeded to paint along the length of my upheld penis I said, ‘What's that?' He said, ‘Glue.' I said, ‘Glue?' He said, ‘Yes, glue.' He took care to paint all the skin without any gaps. He then lay it back on the paper, he opened a little flat packet, and out fell what I thought looked like a condom. I said ‘What's that?' He said, ‘A condom.' I said, ‘A condom?' He said, ‘Yes, a condom.' I thought, ‘I'm going to have to stop asking questions.' He then opened another little packet and out fell what looked like a small hard white plastic valve open at each end. He pushed that on the inside of the unrolled condom, then he picked up a short piece of rubber tubing, about six inches long. This he pushed over the hard white plastic valve, with the condom over it, fixing the tube, the valve and condom together. He then pulled my sticky white penis up, as long as he could, with the condom rolled over the head, then carefully rolled the rest of the condom down the length, covering all the glue. He squeezed it gently to make sure there were no air gaps. He then withdrew an ordinary sewing needle from a pincushion on the tray and carefully pushed it through the rubber tubing just above the hard white valve, to break the condom which had been pulled tight inside. He then attached the other end of the rubber tube to a long clear plastic tube with a litre bag on the end. He attached that to a wire holder which he hung on the frame of the bed. He then tapped my lower gut, just above the bladder, ten or twelve times, then pushed his fist, quite heavily into where he'd been tapping.The urine spurted out through this extraordinary collection of plumbing, and into the bag hanging on the side of the bed. He said, ‘You must fill that,' pointing to the bag, ‘twice a day.' He had a strong Moroccan accent, ‘Now we teach you how to shit.'

Sister Rose's chocolate sauce caused a stench so foul, it cannot be matched anywhere on earth. My gut and everyone else's gut had to be emptied completely every second day, and the only place it could be emptied, was here, in this bed. It was emptied every second day to train it to be ready to empty itself when a suppository was shoved in by me, then empty itself while sitting on the loo.

All during this awful, dreadful time, my wonderful little wife was with me whenever she could be. Even when I was asleep in the day, after the torment of the chocolate sauce, I'd wake up and she'd be there. She was living in a B&B nearby, and her mother had lent her, her car. Her mother, who you would have thought would be aghast at her lovely daughter now tied to a cripple for goodness knows how long, was marvellous with her acceptance of the situation. I didn't deserve such kindness I was getting from all those around me.

After about ten days of enduring this torture, I was allocated a physiotherapist called Sally. She was a smiling, pretty, blond girl and very strong. We still correspond and see each other occasionally to this day.

To even get to the loo, and sit on the bloody thing, I first had to learn to sit up and not immediately fall flat on my face, or backwards, flat on the bed. Being paralysed from the waist is exactly like expecting a pencil to stay upright when letting it go with its point on the paper. This feeling of having no control was frightening and entirely unexpected. I really didn't think I was ever going to get it, other than holding on to something. All I had was the weight of my arms, if I was falling forward, I had to move my arms back, or if I was falling backwards, I had to move my arms forward. I suddenly got it. I can only equate it to finding you can ride a bicycle. You think your father is still holding you up, but he'd let you go at the other end of the drive.

The first ‘go' at being on the loo was an absolute disaster. I managed to get into a wheelchair, sort of on my own, after quite a few lessons from Sally, but getting out of it and on to the loo seat, was beyond me. So the orderlies picked me up and put me there. The loo seat was a blow up one. As with most male paraplegics, the muscles on the buttocks quickly shrink away to nothing. Therefore the sacral bones can very quickly tear the skin from inside, it can take weeks of lying on your stomach to heal. They gave me my suppository and left me. I had a glove on the right-hand. I got my bearings and slowly tried to push the bloody thing up into the lower bowel, I couldn't get there without slightly leaning forward, With my left-hand I steadied myself by leaning on the front of the seat. I just got there and after some fumbling, not being able to find the anus, I shoved it up as far as I could. With relief, I leant back against the cistern, closed my eyes and waited for the result. Quite suddenly, without any warning, I lost my balance, my arms flailing all over the place, I crashed to the floor. I don't know how long I lay there, it seemed an age but it couldn't have been very long. The ward nurse came in to see how I was getting on, and said, ‘What on earth are you doing down there.' She called the orderlies. The suppository had come out and lay, accusingly, on the ground next to me. They scraped me up and carried me back to bed, to fight another day.

The mornings started early to clear-up the dreadful results of the ‘chocolate sauce'. I meanwhile had asked the ward nurse if I could stop taking it. She readily agreed. Apparently that's what they were waiting for me to do, not just me, everybody. It was part of the training process. As we were all so helpless, we'd naturally become reliant on the hospital and its system. They wanted us ‘to question' and take back the responsibility of looking after ourselves; looking for potential sores; not staying in one position for too long; making our own decisions. Sally taught me how to handle my wheelchair. Get in and out of it from different heights, even from the floor and from the front. In and out of a high-sided bath, or a sunken bath. Even getting dressed had to be retaught. One thing had gone deep into my psyche. It was, of course, the chocolate sauce. Deep in the back of my mind, I'd resolved not to eat, nothing in, nothing out. Whenever mealtime came along, I felt sick and if I made myself eat, I retched and retched until it came up. Years later we talking about that episode with Sally, and she said, ‘Yes, we thought we might lose you.' So when I said I'd like to leave, no wonder the request was so readily accepted!

One of the options we were given was to learn to use leg callipers, metal rods, hinged at the knee and strapped on with thick leather buckled belts, as a way of simulated walking. Practically all the paraplegics took up the offer. Obviously, if anyone had recently lost their ability to walk and then offered the chance to do so again, however clumsily, they would jump at the chance. The success rate was more or less 100% nil. The hospital knew this, but they had to offer it as an option because it was there. Sally wasted days and weeks, holding me upright, in one of the long, never-ending passages that seem to epitomise hospitals; She was trying to make a new method of walking with crutches and callipers instinctive. I'll try to explain it, see what you think.

You first buckle on the callipers, which are specially made for your legs. They must lock into the thick heels of a new pair of heavy leather walking shoes. Then you lock the callipers straight from the hinges at the knee. So with locked straight legs, and your hands holding the handles of the crutches, you place the points of the crutches, on the floor, right in line with the hubs of the large rear wheels of the wheelchair. Your upper arms are now parallel with the ground. You push directly downwards, with all your might, lifting yourself to a standing position so the soles of your new shoes are flat on the ground. Be very careful to keep your hips pushing forwards, to keep your upper body and legs in line. Don't look down, or you'll jackknife, and fall flat on your face. Stand there for a minute or two, to get your bearings. It's worth the effort just to see life from that viewpoint again. You'll wonder how on earth you're going to make your legs move forward, one by one, to start walking. Move the points of the crutches forwards, and place them about a shoe's length ahead of the shoes and lean on them. You can start with the right or left leg, so I'll start with the left. Move your weight on to the left crutch and use your upper body, on the left, to lift the left hip, raising the left shoe off the ground. It will then swing forward, ahead of the right leg, then let it drop to the ground by relaxing your upper body. You have taken your first step. Then shift your weight on to the right crutch, lifting the right leg with your upper body, allowing the right leg to swing past the left one, and so on, step after step. It's so easy, one step, then another step, away I went, you couldn't see me for dust... in my dreams.

All my dreams were so clear, so detailed, so distinct, like the beautiful animated cards you receive online on your birthday and Christmas, always about moving my legs. Sometimes, in a half-awake state, I felt my legs moving under the sheets, so I determined to keep them moving while I awoke fully, feeling they would go on moving when fully awake. It was very depressing when this happened, and then waking to be confronted with the stinking ward. Never once did I learn to take an unaided step.

Another incredible device I was told about while at Stoke Mandeville hospital, without which I really don't know how on earth I would have coped, is an internal/external bladder controller. As it was still regarded as ‘experimental', it couldn't be entirely funded by National Health Service. But its implantation could be if I could fund the device itself. My Aunt Carmen offered to buy it for me. Such a kind offer I really didn't deserve. Internally, on the left side of my chest, under the skin, is implanted a signal receiver. Two wires are threaded down under the skin, around to my spine and down to the vertebra, thoracic number 12 to the nerve endings that control the bladder. By chance, the spinal cord was cut by the collapse of vertebra number 10. The control box is about the size of a packet of cigarettes. Externally, I hold its fellow receiver over the one under the skin. An electric shock, at a particular frequency generated by the little box, contorts the bladder for about 10 seconds. This automatically cuts off releasing the neck of the bladder, the sphincter muscle, allowing all the urine to shoot out and down the pipe to the bag on my leg.

Talking about electric shocks, it brings to mind another short interlude involving just that. I accepted my wife might like to have a child of her own one day. So we brought up the subject at one of my outpatient check-ups. I obviously needed to produce sperm, without the ability to have an erection and ejaculate. I really don't know if this is how it's done now, but we were told an electric shock had to be administered directly to the prostate gland. Can you imagine! Hopefully sperm might find its way out into an awaiting test tube. It would be taken immediately to the lab for analysis. This odd procedure took place and yes a small amount of sperm did dribble out and was hurriedly sent to the lab. Shortly the result returned, only to reveal there were a few sperm but they were all dead. I said, ‘Of course they're dead you've just electrocuted the poor little buggers.'