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.