Beginners: Live for the day – the future is unknown!

Since I last wrote i have been to London to meet my new grandson Theo. He is of course gorgeous. When we (I went with my daughter Fran) first met him he was still snuggled up as if in the womb, feeding (attached to his mother’s breast a lot of the  time), sleeping, barely opening his eyes and when he did he looked as if the world was too bright for him – technicolour sunshine. Over the space of four days he gradually stretched and opened his eyes more and by the time we left, after many ‘holdings’, kisses, the taking 5 million photographs and celebrating at umpteen delicious meals with his parents Tom and Bea, and Bea’s parents Ian and Patsy,  and my daughter Rachel and her partner Dono and son  Kabe and my sister Mary, and Bea’s sisters Laura and Isabel and their partners (what hospitality never mind the cakes), Theo  was really looking at things responding to light and sound and singing and laughter.

I felt strange when at one point last Sunday I had both my first grandson Kabe on my right knee ( he is 16 months and really a  little boy now and a  totally delight),  and Theo resting on my left knee,   and realised that  I  did not think I really knew I was a  Granny ‘properly’ until that happened.  I find it hard to explain that emotion: one is a mother, and  Grandma (Scotland!), yet one feel also  quiet separate as oneself – one’ is’ these things/ roles  but then one is also just oneself,  and sometimes I feel slightly unsure of exactly who I am now i am ill as i keep thinking of how i may not be around soon to be that Granny.  Which feels more strange than self-pitying.  Very sure and also unsure as everything one took for granted is now part of the present and  an unknown future.  Live for the day they say but when you know you really are it  is a weird feeling, like moving between worlds. Friends write or come and visit and and say things like,  ‘you are strong’ ‘you are determined’ ‘being positive is half the battle’ as if tenacity of spirit can win through and i know that matters but then every day i read obituaries of people who were surely equally strong and determined. Cancer as my oncologist said to me on Thursday is awfully silent  illness, it just keeps growing quietly until it begins gradually to disrupt the functioning of your body and then it’s just a David and Goliath struggle and sadly Goliath normally wins.

Travelling to London was like moving into a parrallel world: one totally familiar yet one that one has kind of moved out of, ‘in’ and ‘out’ of the world of ‘cancer’ (which is populated by lots of people like me and many a lot younger. It’s salutory to go into Ward 1 of the Western General there are so many people coming in for life infusing chemotherapy). I have travelled so much in my life… been to so many amazing places, had great experiences and  and met so many wonderful people – made it my business i suppose to know  certain parts of the world almost always since  1973 lead by music. But since March 2011 apart from a crazy two day trip to Arisaig with my friend Sue and Barbara’s mum  Joan from Seattle, I have not been further than North Berwick (both fave places nowhere better in the world than either of them). Still  the thing is with cancer, public places, lots of people and travel  are  to be avoided as possible places of infection  – so  you – at least I – have become a tad neurotic about catching infection which would be a real disaster.

Still I threw caution  to the wind yesterday and today going to see the wonderfully silly French film Potiche at FilmHouse  last night and the excellent  Beginners at the Cameo  tonight.   Beginner’s was recomended by two different  friends only yesterday as ‘light you will like it’ obviously forgetting how one of its’s main themes – cancer and death – woud be uncannily pertinent.  I love going to films and always have since joining the Film Society  at Essex University in 1967 (run by fellow students who went on to found The Other Cinema). I must have seen hundreds of films  in my lifetimemany of them classics . Saturday night at home in the early 1960s we all sat round as a family and watched the Saturday night film on BBC TV  (like ‘I Remember Mama’ with  Al Jolson etc). I can remember the frist ever film I went to: my Grandma Flo(rence) took my brother and i to Rock Ferry too see the Al Jolson story. A man came up out of the bowels of the cienam on a pivoting platform playing the organ.  I remember how dramatic it was.  I love the way film  take you somewhere else and deepens your experience or at elast puts whole new set of images and thoughts in your head.

Today and yesterday I went largely to the cinema to avert  my mind talk as yesterday I saw my onocologist Dr Lesley Dawson (who wears the most wonderful  smart frocks – she is an impressive woman in every way – intelligence, humour, mood, direct way of talking,  and … frocks!!). The ‘bad’ news is that it seems things are not progressing as hoped.  My recent  scan shows ‘new’  tumours that were not on the earlier scan I had the day before my operation in March.  Apparently they could have grown in the 10 weeks between the operation and when chemotherapy began. One thing is for sure is that they have not ‘disappeared’ with 3 cycle of ‘gold standard’  capox life infusing chemotherapy. Nor so far is there any visible shrinkage in any other tumours. Hugely disappointing to say the least but not unexpected as I was told that my cancer might  be resistant – it is stage 2 cancer with stage 4 presence.

As some of my side effects like tingoing in fingers and numbness when touching cold things has not quite stopped in the third recupoeraiton week Dr DAwson decidde that I should not have a life infusion this wek just taek the capcetebine for 2 weesk adnb have the third week fof to recuertae. This means that i was only at the hospital for an hour yesterday. No drips, no treatment, no sitting and listening to the Archers Omnibus.  I was almost begging for it from the nurse as i had got my head into it happening! So no being shrouded in wool for the next 10 days, no ‘difficult week’ ahead… instead a kind of ‘holiday’ which takes some getting used to… of course i felt challenged afterwards and wept but got to see it as something necessary and positive.  I may have onw or two cycles without oxyaltyplatin as it is the drug taken intravenously that stimulates the most side effects in combination with the capcetabine.

The funny thing about about going to the cinema to cheer myself up – and Potiche did that as it is so funny – Catherine Denueve ends up as a mature, singing ‘feminst’ MP! –  is  that in the film Beginners the father is dying of cancer.  Anyone who has seen the film or  read the recent interviews with Ewan McGregor ,who is great in the film as the  son and the film’s main subject – hero – may remember  that his father in the film ‘comes out’ at 78 after his mother dies… and when he has cancer. At one point at one of the many parties  his father holds in his home for the lovely ‘gay’ group of friends he becomes a part of,  he tells someone he is ‘turning the corner’ ( a phrase i associate with the I Ching but that’s another story). His son says  ‘why did you say that Dad? you have stage  4 cancer and there is no stage 5’ . And i thought wow that is me I have stage 4 and I am probably the only person in the cinema who is in that position. No – of course i did not stand up and say so! But wow it boruight it home – I am at stage 4 and there is no stage 5.  I loved the film – it’s quirky and thoughtful and about loneliness and friendship both of which I think I know a lot about.  I am often lonely but I get on with life any way i can and count myself  lucky I have and do  enjoy living my life  – ‘keep on keeping on’ has long been a motto – a leit motif. Unlike McGregor’s  Dad in the movie I have never sought another  partner after my marriage ended over 22 years ago now  and never understood why either! again another story. Nor am I gay alhtough i do love and esteem  my female friends.

I hope my ending is as peaceful and gracious when it comes as the father in the film has,  but as my daughter Rachel said to me today, paraphrasing (was it) Dick Cheney (!) ‘the future is a known unknown, and also an unknown unknown’!  Yesterday  I felt totally astonished the cancer had not shrunk and wept telling my daughter Fran,  ‘I am not ready to die’.  Today I woke up and thought of Theo and Kabe and their present and future and that of my three children – and they are all the future – mine and theirs  – whether i am here or not they will grow and stretch and blossom and thrive and do amazing things like i have done and as cliché  as it sounds  that is the way of the world. Indeed it is re-assuring.

I remember having the luck to see the Dalai Lama soon after i was out of hospital in 2004 after breast cancer – yes i should have been in bed but hey one cannot miss the Dalai Lama if one can possibly get to see him  (thank you the person who got me two tickets at the last minute when it was sold out – I took my  sister Mary). He addressed an audience full of children and adults at the Usher Hall and he was funny and witty and full of that depth one attributes and hopes for from  him. He does not disappoint. He  exceeds what you could ever hope for.  In answer to one question about children who die he said that life is given and we have no control over whether we live 7 minutes, 7 hours, 7 years or 70 – or something to that effect.

This reminded me of a kind of vision i had when I  was coming out of one of  my breast cancer operation probably full of morphine, a vision so clear  i feel i saw it in a film. In this ‘film’ God – who is really an old man in a robe with a beard  – goes into a long high room  with walls of glass which is like a TV producer/director’s   control room full of TV screens in layers on top of each other (like David Bowie in the film The Man Who  Fell to Earth). And God looks at the first screen and throws up his hands and says to the person  sitting in front of it, ‘Oh no – not … so and so…’ And he  then moves to another screen and says the same thing. He is very distresed. And one of the people sitting in front of the screen turns and says to him quietly, ‘But you knew they were coming up today – you knew they only had x years…there is nothing we or you can do.’

So in a way that is how I feel. The future in unknown. My number is being called but no one knows exactly when  day is when  will be on one of those screens. Least of all the doctors who despite their expertise – and I do not doubt it – can only try to come up with a life infusing  chemotherpy that may work and may not for stage 4 cancer.  It’s hit and miss with  knowledge as to what might hit yet might not.    As Dr Dawson said, if we could only open me up briefly and  have a quick look inside across my stomach they’d have a better idea. The perinaeum where my cancers  are growing is a largish  area and even a CIC scan which  she showed me on a screen can only come you with small(ish!) dots that look dodgy  and should not be there. The scan produces slithers of images like sliced bread – sliced images through ones body. It’s an art to be able to read and interpret  them – the art of the radiographer and oncologist. On their expertise one is totally dependent. It is very humbling.   It’s amazing how they deal with so many patients day after day so many of whom they can help and others like me that  they can try to help to keep things stable but cannot know if they can effect outcome. In my case they are hoping to control the cancer but it may be romping away.  Yet I feel fine and dandy and except for tiredness  which itself could be part of the  stress of knowing I have it – it’s still impossible to believe it is really true! The sun shines, the flowers grow, the rain falls, the birds sing, my second grandson Theo has been born, he visibly grows day by day  like my first grandson Kabe  who has changed from toddler  to little boy in the space of a few weeks.

So yes live for the day. The future is unknown! Every day is a new beginning maybe!

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About Jan Fairley

I am an experienced and passionate ethnomusicologist working as an arts and music journalist and broadcaster, writer and editor as well as researcher, lecturer, radio presenter and producer. I have a breadth of organising experience at home and abroad. I am a fluent Spanish speaker. I love travelling and have worked abroad (notably Chile 1971-3 and again in 1994) and researched in Cuba, Spain, Brazil, Argentina, Finland.
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3 Responses to Beginners: Live for the day – the future is unknown!

  1. Martha says:

    Oh dear! You write beautifully! I cry, and I smile because you are so full of wisdom, and that wonderful Brit humour. When I grow old I want to be like you! As I told you, you have a best seller there. See you in a couple of days. Mt.

  2. Jane Cornwell says:

    ah Jan. How moving and humbling and life affirming. You’re a marvel. It’s no wonder so many people love you. Jxxx

  3. Jenny Harper says:

    Beautiful blog, Jan. Very vivid and very moving.

    It was Donald Rumsfeld, by the way (known knowns, known unknowns etc. Much deeper and wiser than he was given credit for.

    Lots of love Jenny xxx

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