writer's moll

If I should go before the rest of you
Break not a flower nor inscribe a stone.
Nor when I’m gone speak in a Sunday voice
But be the usual selves that I have known.
Weep if you must,
Parting is hell,
But life goes on,
So sing as well.

We lost our beloved Rob last week. Emerging from the parallel universe that we’ve lived in for the past month – a small room next to his with a sofa bed, 24/7 care, shared by the family in shifts - feels weird. I wanted to write about him but could gather together no more than a few scrappy thoughts because my head resembles a cupboard crammed so full that it’s impossible to open the door to sort the gold from the dross, so I’m adding some stuff from his step-Dad’s funeral tribute.

I’ve mentioned before people’s idealised versions of dying and one of them is deathbed declarations. His younger sister was distraught that Rob had none – no confidences to impart, no promises to extract. He died one day short of the first anniversary of his operation to remove his tongue and out of those 364 days there was just one, 10 days before the end, when he appeared to accept the game was up. He remained silent, with a slightly surprised expression, then asked for his medication to be reduced enough to give him a clear head and gave orders to write or do this or that, or phone this or that person. He never mentioned death again.

He was mad about gadgetry from the very beginning – at 15 he proudly demonstrated a gadget he’d made to open and close his curtains without getting out of bed – to the end when his house was awash with electronic wizardry. His butterfly brain never had fewer than five projects on the go at any one time. But his family and friends also benefited from his expertise – his last job was restoring the sound on his step-Dad’s laptop.

No one would ever say he was an undemanding patient – he could easily keep 3 people busy at the same time. He liked a particular brand of wipes which proved difficult to find and he didn’t like the first, second or third substitutes I bought. So, when a while later he’d run out and asked for more we asked what kind he said “oh anything, I’m not fussy about stuff like that” and looked all hurt and puzzled when his sister and I exploded with laughter, saying “what? what’s funny?” The amazing thing was he never complained about the big things – he suffered them with fortitude. But the little things that were fixable he wanted fixed. During chemotherapy sessions it got on his nerves when his IV machine bleeped to indicate a fault, and much to the exasperation of the nurses, would mischievously fix it himself instead of waiting for them. He was too impatient to feed himself through his stomach tube (PEG) with the normal syringe and invented a pump which would do it 3 times faster.

Though he weighed less than 6 stone (84 pounds) at the end, he never lost his vanity – essential items always included his deodorant, aftershave and Calvin Klein underpants – or his hope for a miracle. 10 days before he died, his PEG failed and the doctor, having just told him how short a time he had left, added that a new one would not work. Rob asked for a pad and drew a cross section of his stomach and the PEG to show where he believed the fault lay, with a plea at the top of the page “I want to feed – I want to live”. He got his new PEG.

He was afraid of sedation and despite frequent advice to accept it, refused it to the end. I promised him that I’d never let them give him anything he didn’t want, but just before he went into a coma he had a panic attack – his pulse racing at 140 - and the nursing sister persuaded me that it was cruel not to sedate him. I agreed and now they’ll always be that lingering doubt that his last thought may have been “my Mum betrayed me”.

I’ve often moaned about our NHS but I don’t know how we’d ever have managed without the exceptional love and care of the nursing staff at the hospice where he died. It’s rumoured that funding for the Rainbow Rooms for the terminally ill will be withdrawn in a couple of years’ time and will have to rely on donations. If this is true, the community will be the poorer.

I’ll let Rob have the last word. This is a text message he sent to his father:

It has been great how everyone has pulled together – a shame that it couldn’t have been something nicer to cause it like a family BBQ. I feel loved by everyone and it makes me see how important life really is. I am not going down without a fight. Love, your son Rob.”