Nil by mouth

We are at the end of a month's stay in the Auvergne. Major is humming the MASH theme as he re-tiles the shower. This morning he serviced two chain-saws, changed the oil in the Land Rover, washed my dishes, mopped the kitchen floor, rinsed henna from my hair and up-loaded a few dozen CD's to the ipod whilst learning a foreign language. When the tiling's finished, he will saw and chop wood for the fire.

The yellow pallor of one who frequents Charles Dickens Ward is gone, replaced by the more familiar hue of Ron-red, and hair has thickened where it had thinned ever so slightly at the edges. The skin, having burnt and peeled from the neck in such an alarming and seemingly irreparable way in October, now has the newborn, soft perfection for which any woman would rush to Harley St to trade her breast implants. Only a floppy turkey chin, the temporary result of a direct hit to the drainage system, remains as a visible testament to Major's battle, well, that and the skinniest little arms and legs you've ever seen. And the PEG, for he still isn't able to swallow.

The longest post-therapy, non-swallowing period he has found on the net is 7 weeks. It is now 12 weeks since his therapy ended, 16 weeks of not swallowing in total, but then what does the net know? The doctors are non-committal about how long he might yet have to rely on the PEG for survival.

My Mum makes the acquaintance of a head and neck cancer specialist and sounds out his opinion. He likens the treatment to the repeated pouring of boiling hot water down the throat, resulting in severe burning which takes a long time to heal, and he is not at all surprised that Major is not yet swallowing.

It feels as if we are without a manual. We thought for a while that the doctors might not have one either, that patient individuality must present lots of unknowns to them too, despite the numbers of people they treat, but lately we've come to the conclusion that they knew all along, and that not being able to eat or drink for months on end was too depressing a prospect for them to come clean about earlier.

Each morning Major tries a few sips of tea, "I'm really close, I can feel it", and lately he has drunk small mouthfuls of Badoit throughout the day. I feel the dryness of his lips and can only guess at the thirst his malfunctioning saliva glands cause to rage in his mouth.

He has been in pain this week, the most discomfort he has suffered since diagnosis and the first heavenly prescription of co-codomol and morphine. He fears the worst, naturally, and there are tears before bed. He resorts to swilling and spitting out the Badoit, stops the hourly swallowing
-progress tests and is kinder to himself with Brook's stretching exercises. The pain retreats.

My offers of thin soup and finely liquidised real food continue to be rejected; the PEG is his life-line, and the fear of blocking or damaging it is strong. There are substances besides NHS-provided Fortisip and Nutri-food, however, which Major does not consider to be a risk; green tea and crushed selenium tablets, self-prescribed anti-oxidants, are syringed for breakfast, after which, as brass-playing brothers know, there is "a drink for anytime of the day and night"; a red wine before pumped-lunch, an evening apero of Pastis, a whiskey night-cap... (I use the singular and specific times for style rather than accuracy.)

The PEG's tube, initially transparent, is now dark red. Major says it's the staining of the green tea, but green tea, by definition, is not red. I can't suppress my controlling disapproval and it overflows in a nagging reproach. He answers, "do you really want to deprive me of my only pleasure?". What can I say?

Fingers

I am almost two months out of synch... apologies. Major is doing well.

In late November there is a follow-up consultation at the hospital. I am rather excited at the prospect of seeing Dr Rowell again with his tic, his lovely hands and gentle care. We tell everyone that this is the BIG one when Major will learn how successful treatment has been, though I'm not sure now where this notion came from.

We arrive early and call into Graham's mask workshop to return a tub or two of unused Aqueous cream. He greets us warmly, but is indignant that management have wised-up to his supply system of the unguent and put a stop to it: "can you believe it?" He rolls up his sleeve to show me purple and green bruises sustained when he fell off the stage in Frankfurt the previous weekend.

It is not Dr Rowell who walks into the small consulting room, but a beautiful young Asian woman, Dr Tan. She is Madame Butterfly with a miner's lamp: the skin under her chin actually defies gravity and domes upwards. In an ungrounded flutter she tells us how advanced she is on her road to consultancy with that need that clever people have of telling you how clever they are. With the lamp on her forehead she peers into Major's mouth and prods the area ulcerated by the cancer with a long sliver stick. He tenses and flinches. She pronounces it inflamed and prescribes antibiotics. Standing behind him, she presses her pokey little fingers into his neck, eliciting a gargled, closed-mouthed hum of pain. His eyebrows are raised to the top of his head and his eyes fill with tears.

Her torture-lust sated for now, she becomes earthed and calm. Major is alarmed that he still cannot swallow though it is six weeks after the end ot treatment, and she is reassuring with her reply: "Noooo, of course you can't yet".

Brook, the speech therapist, joins us. She chats as if she's at a party, interested in Major as well his mouth. A month into radiotherapy his voice became crackly and rasping, and very painful to use. It's already much better by this appointment, though it still tires quickly. It sounds as if he's holding liquid in his cheeks when he speaks, and consonants are articulated softly, if at all. She says that the tissue will heal as if the mouth were closed, and, as he is not eating, it's important to stretch it by levering the jaws open. One finger easily fits between his teeth, but there is not room for two and he is shown stretching exersizes.

Three weeks later we return for another check-up. There has been no mention of a scan and so we are more realistic of what the day might bring; not so expectant of receiving a shiny clean bill of health. And the thought of going another round with Madame Butterfly is sobering, especially as there has been talk of an inspection camera being put up Major's nose this time, and she is not the inserter of choice.... It's a great relief to learn that athletic, squashed-nosed, slightly sad Mr Norris is to see Major. The last time we saw him he was in his scrubs, blue shower cap and all, just before he performed the biopsy back on the first day of Wimbledon.

He examines Major's mouth and says that he remembers clearly the ulcer as it was in the summer, and that it seems to be healing well. Standing behind Major's chair, he slowly and lightly traces the lines of the jaw with flattened fingertips. He sweeps beneath the ears, around and down the front of the neck and inside Major's shirt to the shoulders in an unbroken, careful, sentient caress. Later, Major tells me that the touch had felt therapeutic. (It sort of felt like that for me too but I can't really go into details as it's not that kind of blog....) At the end of January there will be no escaping the camera up the nose, but for now Major is spared.

I want Mr Norris to praise him for having come through so well, for having endured the harsh rigours of treatment, for being so strong and brave: a big tick from teacher, a medal, a pat on the back.... He quietly and unsmilingly says that they will be keeping a watchful eye on Major for the next five years.

Wait and see

After only a couple of visits to the hospital we belong there, we're in the club, know where to go and what to do. Even I, the appendage, feel that I have my place under its Oncology Wing.

We clock up a few hours in the radiotherapy waiting areas. Someone on the staff (clerical, I suspect, without knowing why) has a subscription to Gardens magazine (NOT Gardens Illustrated which would be a completely different kettle of fish; you probably have to be BUPA to find that in a waiting room), and there is Country Life, some old Cosmopolitans and a Vogue. Nothing housey. By the time Major's initial simulation is over I have flicked through the whole stack, spending most time with Hello, circa May 2003. That distraction out of the way, the real waiting game can begin which is Observation (subtitled Guess the Cancer).

The radiotherapy labs keep office hours, Monday to Friday, 9-5, so there's no shift work, and we see the same sets of staff most times, and, often, the same patients. This is surprising as the sessions are short, no more than 4 minutes or so, and the waiting areas are usually busy. Maybe it's to do with the settings of the machines, since the strength of x-rays changes throughout the treatment; some weeks a full-on zapping, other weeks a mere tickle, the machine teasing the tumor like a cat with a mouse. Maybe the patients we see are all in step with Major and his course, though their cancers are in different bits. The thought of the planning this would involve hurts my head; it's more likely to be the alphabetical order of their names... In any case, a lot of people in the South East of England are taking a nuking.

Many of the women go into cubicles when they arrive, and exchange their tops for blue hospital smocks, and their shoes for thick socks that look as if they belong to wet suits. I guess from the smocks that they have breast cancer, though the socks are a bit of a mystery.

During half-term, children accompany their mothers, swinging their dangling legs from chairs, and finding things to fidget over and giggle at, delightfully shadow-free.

There are men with red patches on their necks, areas of burning defined by straight lines, so maybe they're oropharynx like Major, though the thing about this game is that you never know - it could be the bones, or something else in the neck that is cancerous rather than the squamous cells. (In the beginning, Graham told us that there's a cancer for every bit of the body, and showed us a willy immobilisation unit he'd made.)

There are out-patients in wheelchairs brought in by porters from the NHS bus who will have to wait for all of their fellow passengers to be treated before they can go home again, and in-patients with no hair, wheeled up from the wards in their bed clothes. An old man is brought along in his bed, and we watch his progress through a whole week at the same time every day. He starts off on Monday sprouting tubes, frail and semi-conscious , and by Friday his hair is neatly brushed and he's alert. I would like to say hello (my Oncology Club membership might allow me to) but am not able to break through the bed/dignity/big-mouth, nosy soprano thing.

One day there is a prisoner waiting with two guards, one of them joined to him by handcuffs. He is round-shouldered and cowed, not a malignant presence, but weighty, more priest than paedophile. He looks like Shylock, or a faded flamenco king, or an aging Indian chief; swarthy, pock-marked skin, a huge hook nose and intense greeny blue eyes that make me think of exotic fish, though I only get the quickest glimpse as he casts them down to the floor. He is not your average man of Kent. A skull cap is on his head, but in place of robes, regulation jeans and a plum sweatshirt dress his thin body; they express nothing of him but the loss of his expression. In contrast, the beefy anglo-saxon guards are completely at ease with all that their black and white uniforms and shaved heads say of them. There is no interaction with their charge, but they chat and laugh with each other. Really, casting and wardrobe have excelled themselves again; I even forget to guess.

Major's favourite team is at LA3, particularly Rachel who has warmth and curiosity, and quickly tunes into his way of being. The boys in LA2 do not possess such charm; they call the patients' names with their heads in their clip-boards, then "date of birth?" across the room when the patients are barely out of their chairs. These are people they see day after day, for weeks sometimes, but Major says they're OK once he's inside the lab, and anyway, much better that they're really quick with the mask business.

Most times Graham will saunter through at his slow andante, "it's all go today...". He'll stop for a chat, and ask Major the time of his appointment, then look at his watch. The machines can be temperamental, and have cranky days when they don't work well, causing delays. On such days Graham has a word with the lads, and Major's name, as if by magic, will be the next one called. Major oils this system with gifts of strawberries and apples for the teams, whatever he finds at the farm stalls on his way in. He and Graham share an innate understanding of what makes people tick, and would thrive on any black market. They're natural survivors.

The man in the thermoplastic mask

Radiotherapy ended over three weeks ago and Major is recovering well. This is how it started...

At the end of August, Major and his new mask have a 45 minute appointment in the radiotherapy simulation suite. Dr Rowell is there with his team to work out exactly where the x-rays will strike. The purpose of the mask is to keep the patient still so that the rays hit their target precisely without damaging surrounding healthy tissue. Mildly claustrophobic, Major has had nightmares about this since the date with Graham; I know because most nights I've been woken by his whimpers and flailing limbs.

He lies on a plinth with supports under his knees to keep his back comfortable. The mask is placed over his head and bolted down; he's told to raise a hand if it's too unbearable in which case he'll be released. His eyes are open, and immediately dust falls into them from the mask; he can barely blink it fits him so tightly. Eyelashes poke out through holes too small to allow a relieving fingertip in, and laser-thin lines of green light criss-cross his body. He is left alone in the dark room.

Dr Rowell and the techies sit at banks of computers behind a glass wall as in a recording studio. At the tap of their fingers the plinth goes up, plinth goes down, and the giant head of the machine moves above and around Major at impossible angles for one so huge, its blank face preparing to blow Terminator kisses to his tumor from all directions.

Major's course of 35 treatments is to be mapped out and programmed in during this simulation; decisions made about photons, electrons, neutrons, futons and all sorts of sci-fi business; "warp factor" is probably somewhere in the mix. A radiographer repeatedly rushes in to mark grids on the mask with thin strips of tape, and then to draw lines and bullet points on them in green ink (earthling, lo-tech style). With each visit she reassuringly coos to Major "not long to go now", before dashing out again. After 25 minutes he waves to her as she approaches and grunts through closed mouth his urgent desire to be free. She explains that there are only 5 minutes to go, and if they break now they'll have to go right back and start from the beginning. She tells him he's doing really well, and disappears.

In the village Major bumps into our neighbour, Jenny, a reflexologist. She has made repeated offers of a free session since she heard that Major had cancer, and now he is so freaked out by the simulation experience that he finally accepts. After a generous hour in her slanting chair he floats home across the road, clutching a relaxation cd dealing with FEAR. He dreamily tells me that the session was wonderful, and sleeps all afternoon and through the night. The next day as I'm practising I hear strange moans outside my room, and "no, no, NO". I open the door to see Major denying his fear on my yoga mat, eyes closed, body extended, listening to the cd through headphones. Over the next few days he is often to be found in meditative pose, his fingers forming various shapes as Jenny has shown him, glass of wine on the table at his side.

A second session with her a few days later is as pleasant and relaxing as the first, but, after the third the other-worldly sense of well-being disappears, and Major comes home agitated and disturbed, muttering in all seriousness about the release of demons. Jenny reckons he is particularly responsive to the work so it should have good results.

On the next visit to Maidstone Major seeks out Graham and asks him to cut eye and mouth holes in the mask. He asks that his nose might have a hole too but this is an orifice too far and is denied him for the sake of the mask's "structural integrity". When Major enters LA2 for his first dose of rays he asks to hold the mask before being clamped under it. He gives it a good shake and blows away dust from the new cuts, then gives himself up to the plinth. He says that by the time the session finishes, some 4 minutes later, he is almost asleep.

Comments

Thank you so much for the emails you've sent about the blog and the love you've sent to Major. It's fantastic for both of us to have the good vibes coming through. I know that comments have been hard to post here, but the settings have been tinkered with, so hopefully, if you check the "anonymous" button that comes up when you've clicked on "comments" and copy the squiggly letters there, the comment should get through.

Trick of the tail

October 20th: the final day of treatment. To mark the occasion and to catch one more installment of the radio-lab waiting room theatre-show, I accompany Major on the last of his pilgrimages to the healing waves. Autumn sunshine obligingly paints the delights of the journey gold, and roadworks have begun in several places along the way causing queues where until today there have been none, the cycles of repair neatly taking over one from another.

Major is now 2 1/2 stone under his normal weight and supermodel thin. It suits him in a pale and interesting sort of way; if only he'd wear nice shirts he might pass for an ectomorphic Oxbridge prof. He is bony and fragile to hold, making me understand how wonderfully healthy thick flesh feels on a body. I consider making a chicken stock to supplement his milky courier-delivered "fortisip" but worry that the fat globules will bung up his PEG. My specially created, mega-fattening avocado and milk mush is rejected purely on the grounds of its unappealing colour (70's chemical green; totally un-F&B, despite the natural ingredients). This, I feel, as I watch it sink into the rose bed, is the behaviour of a 3 year old since the PEG bypasses any sensation of taste and it would have done him GOOD. Oh well, must respect the patient's wishes, and, to be honest, I didn't really fancy it either.

The weekend passes with nothing much but the compiling of a huge shopping list, mostly goodies for Delia's mincemeat and Christmas cake, but also odd little essentials; socks, watch batteries, floor mop... There is going to be a big shopping expedition featuring Major's favourite food, MIXED PEEL, which usually at this time of year he'd be sneaking into the kitchen to eat straight from the pot with sticky fingers. We will experience a return to normality now that treatment has finished, a celebratory afternoon out in Hastings.

Major drives and makes a return trip on foot from the car park to ESK (fab discount emporium) to get change for the machine while I browse shelves full of all the cut price crap anyone could wish for in a lifetime. In Trinity Wholefoods he holds the baskets like a dutiful butler and I pile them high with yummies above and beyond Delia's requirements, the rapacious wife of Jack Spratt. But after Woolies, in the third jewellers on the watch battery quest, he has to sit down. His wax jacket stays stiff and large around him as he disappears into it on the chair, half little old man, half tortoise. He is a pale shade of yellow. He lets me drive home.

The next day he visits the GP, the first appointment since April, when he was told for the third time, "No, I'm sure you haven't got cancer". The vein in his arm where the PIC-chemo line went is showing as a dark streak through his skin, and he feels so weak and cold, more spittle than ever.... The GP says this is all to be expected after such treatment. I ask whether he apologized for the mis-diagnosis, "No, but he smiled a lot and was very gentle."

It's only now, at the end of treatment, that we are told things will get worse for a couple of weeks before they improve, or perhaps it's that we are only taking the information on board as Major is feeling so unexpectedly grim. I imagine that the radio waves, having accumulated in his neck over the last 7 weeks, are dancing out a wild and exhausting frenzy of squiggles to white noise, untamed and free now from the machine that created and administered them. (Have I just described sperm?! These are the negative of sperm, going in for the kill rather than creation, yet the result also being life.)

I leave for a weekend of work on Friday, assuaging desertion-guilt with the hope that Major will be more comfortable in complete silence. He says that he's listening to his body and his body says "sleep". On Sunday evening I return to find that there has been an amelioration; talking seems slightly easier and he is not so listless. He's halved the time the hospital said it would take to turn the corner out of the grim stage, and I'm impressed by his strength. He is reappearing.

Mask man

Back in July Major has a day of appointments at Maidstone Hospital. We meet Dr Rowell for the first time, the head and neck radiotherapy specialist. He has a tic after Herbert Lom's Chief Inspector Dreyfus, and beautiful, elegant hands. He will oversee Major's treatment, and gives us lots of time. We learn that the treatment will be "curative" though there is some concern about how deeply the cancer has extended into the neck from the back of the jaw. The fact that one of Major's lymph glands is hard as a rock and full of straw coloured liquid seems not to be cause for alarm; apparently squamous cell carcinoma does not tend to spread to other parts of the body.

Major is pretty much his normal self, energy twitching out all over the place, thirsty... He's lost weight already as eating has become increasingly painful but is relieved to be in the system after 10 months of repeated cancer-denial from his dentist, doctor and wife. The pain-killing drugs suit him fine, and he's wearing his PEG well after the initial infection and discomfort it caused. I, however, feel tired and periodic, and have no protective crust against the world on this day, especially the strange world of the Oncology Wing.

We sit in the waiting area of the radiotherapy labs. Four appointments secretaries work in a bay near us and I listen to them making dozens of phone calls, all to people with cancer, and wonder at the scale of this illness. I am overcome with all sorts of emotions, soppy gratitude for the NHS being one of them, and have to ask Major for a tissue.

A smelly looking man of about Major's age with a long beard and Catweazel hair is pushed to the desk in a wheelchair. He wears pyjamas and a threadbare dressing gown; huge, yellow toenails poke like talons through holes in his slippers. His body expresses captivity and separateness, as if he doesn't understand the language being spoken around him. The staff don't address him directly but talk about his needs over his head. Without warning he pukes up, his face showing disgust and wretchedness and disbelief that he is centre-stage in this scenario. I can't help thinking of acting - the expression is so pure and intense through just his eyes, and the set, casting, costumes, action all so perfect that the scene can't possibly be of real life.

A man in a pristine white tunic claps his hands on Major's shoulders and says, "Don't worry mate, you're in with me next". Graham! His warmth makes me feel emotional and my eyes need another tissue. Its lunch time and he's impatiently waiting for staff to come back to work, keen for us not to be waiting. He's heard that Major is a musician and tells us that the band he plays double bass with got to No 3 in the Indie Charts. We make impressed noises but are too sad (not tears sort of sad) and middle-aged to know what an Indie Chart is. To fill the time and put us at ease, he shows us the lab where he makes the masks for radiotherapy.

It's spotless; a cross between the office of a fastidious computer engineer and a sculptor's atelier. Motorbike leathers hang from the coatstand, carefully pegged to a hanger, and chilies are growing on the windowsills. There are plaster body parts on shelves; a perfect breast, a big man's forearm, and the transparent plastic head of a child. I reach out and touch it. "She's doing fine now", Graham says, a bit too quickly. I reckon the odds on this being true are 50/50.

He gives us insider tips; Major's huge list of appointments is an excellent sign, it means the treatment is expected to work; if there were only a few sessions of radiotherapy the treatment would be palliative. Also good is that Major will have a full head and shoulders mask; head only means they're just trying to make you comfortable on your way out.

He dumps a handful of Roses chocolates on the table before me and explains that he uses the chocolate gifts brought to him by patients as bargaining currency with the pharmacy girls; he gives them sweets and they give him Aqueous cream which, in turn, he gives to the patients to ease the burning the radiotherapy will inevitably cause to their skin. Major is given two tubes and makes a mental note to bring in a big tin of Quality Streets next time. We are also given a book of poems written by cancer staff and patients at the hospital, Graham proudly turning to the one he and his assistant wrote. This completely does me in and I excuse myself to the loos. Its the sort of feeling a weepy movie produces; nothing dramatic, just liquid from the eyes that won't stop.

Major lies on a plinth with his shirt off, his face marked with green lines of light to make sure his position is right for the fitting, his eyes closed. From a tray of hot water Graham takes a flat piece of head and shoulders-shaped plastic, like a marksman's practice target, and puts it onto Major's face. It is quickly smoothed and shaped over his features, pinched round the nose and pushed into eyesockets, sculpted round the neck and clavicles. I take Major's hand and tell him to give his weight to the table, and breathe - I can see from his ribs that he is close to panic -and I watch as the holes in the plastic stretch to mould round him. It's a real sci-fi trip seeing it take his form in seconds.

He now has his very own thermoplastic immobilisation unit. Graham says that when treatment is over he can take it home and keep it.

I think these masks are fantastic! Such faces and stories, each one labelled in hand-written red ink with the patient's name and a "finish" date. Mrs Abbott's also says "dentures out". There's a stack of them piled under a counter in the lab and I'm thinking theatre, dance, school drama projects, art installations, hanging baskets.... Graham says, in a perplexed and somewhat disappointed way, that people don't usually want to keep them after treatment, and they have to be thrown away. Its perfectly possible to put them in hot water and melt them flat, ready to be moulded to the next victim's head, but in this country that's not done for fear of cross-infection. He smuggles out three big ones and three small ones hidden in large paper sacks for me, delighted by my enthusiasm for his work. He wants photos of whatever their future incarnations turn out to be.