When Clive James wrote a few months ago of being ‘stuck with the embarrassment of still being alive’, it struck a particular chord with me – as a number of people thought it might, judging by the number of e-mails I received giving me a link to the piece.
As it happens, I am just coming up, next week, to a year past the day when I was told that the cancer had returned, for the third time; this time to both lungs. It was the first time the term ‘Terminal’ had been used, and I admit defeat trying to put into words how heavily that word hangs in the air.
It is not that ‘terminal’ implies death – we all know we will die. Perhaps ‘Terminus’ might be more appropriate, for that date marks the day on which, like Number Eleven buses, Doctors reverse back into their garage and remind you to take all your luggage with you…from then on, they avert their gaze if you ask questions, shuffle their notes, and invite you to continue your journey on foot – alone. Unless they can see value in you as a guinea pig for new drugs…
People react differently. Some like the Macmillan adverts, fall backwards, flailing arms, unable to cope without ‘support’. Personally, when the Palliative Care team as they are now known, arrived, I mentally stood on the nearest chair and screamed for someone to catch and evict them…I was wrong. Now that I need their help, I realise just how fantastic they are. Totally different to other Doctors. Not concerned with whether you might, in time, become addicted to some drug or other – if it works, if it helps, it’s yours. Carpe Diem might well be their dictum.
The trouble with Carpe Diem, or the usual mantra of ‘live every day as though it is your last’ is that, as Clive has discovered, if you know that ‘today’ is to be your last then splurging your last 100 quid on a bottle of vintage Champagne is a damn good idea. If you can’t be sure, then using the 100 quid to pay the gas bill, with winter chills approaching, might be a better idea…
The other problem with that ‘terminal’ diagnosis is that it instantly puts a bloody great wall between you and the rest of the human race – apart from the select few that, like you, live on in the terminal village. ‘Other’ people will cheerfully tell you that ‘you look well’, or even ‘I’m sure you’ll be better soon’. We are, quite literally, the village of the damned. Lepers in the land of hope. The only truly honest conversations we ever have are with the other inmates.
Rosa was another inmate.
The normal reticence towards revealing anything about other patients was cautiously abandoned when Rosa was diagnosed, a year after me. The six people they had gathered from across France, all diagnosed with the same rare cancer, Leiomyosarcoma, were to be joined by a seventh. Not only that, but this patient had also, like myself, managed to contract Leiomyosarcoma of the womb, without having a womb! Well, I said, she was self evidently female! Not only female, but turned out to be English as well! They contacted both of us to ask if we would like to be in touch with each other – we would.
Rosa blew my mind the first time she wrote to me. I had just penned an article on Coronation Street and the picture she sent me was the one here – taken outside the Rover’s Return when she, a professional magician, had been part of the ‘entertainment’ to celebrate their 50th anniversary. The coincidences were starting to pile up – and we became firm friends. We didn’t meet that often, lived hundreds of miles apart, but the e-mails flew backwards and forward.
She was funny, and witty, and most of all, gritty. So unlike, I have to say, our fellow French patients, who, to put it politely, made the most of being ill. That didn’t stop Rosa from berating me. Looking back over our e-mails today, I see I was taken to task for not following her to Niort to a holistic healer who ‘was wonderful’; soon I was in trouble for not living on pulverised wheatgrass and raw quail’s eggs. I was bombarded with adverts for juicers – when Rosa came to stay with us, Mr G could barely lift her case – packed with industrial juicer and kilograms of organic carrots.
Then she was going off to China to have her tongue painted green (some miracle cure that ‘the Australians swear by’ – that never happened) but at the first sign of the dreaded lung mets, she was fund raising from generous family and friends, of whom she had many, to finance two trips to Dresden to a specialist clinic. She was horrified that I didn’t follow suit when I too developed lung mets. Finally, come last Christmas, she discovered cannabis oil – the wonder cure. £3,000 every month for some special medical variety. She never did convince me to follow suit. She was stoned out of her mind for the first couple of weeks, till she learned that she was supposed to take par anus…we laughed ourselves silly over that.
The last time we spoke, it was to tell her that I was going on the Lord Nelson, my sailing week from Hell. When I returned, there was no answer to her phone. I thought maybe she was taking her young son back to his Father in France. Sadly no. She died on September 11th. The bright spark that was Rosa is no more.
Over the past four years, four of the original six of us have died. The fifth I know not. Rosa and I represented the success stories. Do I feel embarrassed to still be here? You bet; and guilty too. I don’t have a young son. More than that – it feels incredibly lonely. I’ve never given in to self-pity before, but yesterday the tears flowed. For myself, as much as Rosa, I’m ashamed to admit. It was planting bulbs that brought it on. Will I see them come up? I don’t know.
There’s no one else who understands that invisible wall between you and people who innocently say things like ‘I might be able to do it next month’, or ‘perhaps after Christmas’. Terminal means that you can never plan anything in advance ever again. It’s a weird limbo land.
This probably isn’t the post you were expecting. I should have been covering Yentob and Batman answering questions, or maybe Graham Ovenden’s art collection being destroyed – but funnily enough, I don’t care about either event enough…
Give me your best jokes, a few puns; remind me what great fun this blog can be. Ms Raccoon is feeling very sorry for herself. She needs cheering up (so don’t, for God’s sake, mention #CSA!).