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March 28/3/2018 Wombles of Wimbledon


March 28/3/2018 Wombles of Wimbledon

From Mark

Last weekend was back to the Wombles of Wimbledon, so I’m sorry but busy in London this meant no email. Our flat was in great shape after the refurbishment so thanks to Jenny and Annabel – interior designers as well as great cooks. It was good to walk on the Common and see Sue and Axel, Lesley and Fiona. Jenny was able to pop out and see more of her London friends. Simon got together so many of the young men who we were privileged to entertain at so many Sunday lunches during their school years at King’s Wimbledon. You can see the picture of the magnificent young men.

Now we are back in Seaford and have met the oncologist with possible encouraging news. When we first met in early February she said I was dying. She now thinks there are signs that the cancer is being hit. But verdicts have to await next week’s blood test, which will hopefully allow me to receive a full chemo shot for the first time and then a CT or MRI scan to see the effects.

From Jenny

I’ve stopped reading journalist Melanie Reid’s pages in the Sunday Times magazine – she was paralysed in a riding accident five years ago. And I’ve stopped listening to most of the news.  Yesterday my challenge was to find humour during our visit to the oncologist. I’d spoken to an ‘O2 guru’ about my phone so who knows if funny things were out there to make me laugh.

As you enter Eastbourne Hospital there’s a huge sign.

‘Let’s get you home. Every day you spend in hospital when you don’t need to makes your recovery take longer. Your own bed is the best bed. A hospital is not a home. People Recover better at home.’

So essentially ….. Off and go home.

My humour did not stretch any further.

Kings students in Wimbledon

Let’s get you home!

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Tic followed toc


16th March Tic followed by toc

From Mark

Last week Sarah’s business had a visit from Simon Weston from the Falklands and he kindly signed his book for me, dedicated ‘to everyone who’s helped to make it possible for me to be who I am.’

 

And though I’ve never appreciated it so much before, all the kind words and memories I’ve received in recent weeks do show me just how much we are moulded and rewarded in life by our family and friends and it’s good to have decluttered the brain enough and to have opportunity to see just that.

 

Interestingly Simon also reflects what Philip Carr Gomm believes when it comes to fears

‘I believe that in life you’ve got to approach and conquer every fear so the more frightened I am, the more important it is that I knock each fear on the head.’

 

Perhaps that’s what A A Gill was doing when he called his cancer ‘ the full English’. By coincidence my favourite t shirt also depicts the full English breakfast.

 

From Jenny

In quiet moments, funny memories, phrases or sounds, flash into my mind. Today it’s The Guiness Sea horse advert with the surfers, horses, thudding drum beat and the deep voice saying

‘He waits, that’s what he does. Tic followed toc followed tic followed toc. Here’s to waiting.’

 

16th March is the third day of Mark’s 2nd chemo treatment and he says he feels trapped. And so do I. We can’t leave and go away. We can’t dream of holidays for summertime, or plan European city breaks. We can’t imagine where our next house will be, or book theatre or art gallery visits.

It feels like the lull before the storm. Like sitting on the upper deck of the Titanic and knowing the iceberg is approaching.

Knowing that we are not going to get in the lifeboats or dive into the freezing Atlantic.

I hope for once we’ve booked first class and are not locked in steerage with Leonardo DiCaprio. Mark starts with his favourite Manhattan cocktail – he’s told the barman how to mix it perfectly despite the tilt in the ship – or is it boat. And I’ve got a glass of the Titanic’s finest Moet champagne. The staff have run off and left us a dinner tray covered with a silver dome in the empty restaurant – Filet mignon for Mark and Lobster thermidor for me. Just sitting there while the band plays Nearer My God to Thee as we wait.

 

Philip Carr Gomm on his last visit has said to focus on things that are bothering us to discover how they can diminish.

Today my word is ‘powerless’ as it’s the weekend, when the medical world is shut, no-one is working – so don’t get ill.

There’s no point being frustrated by it, just accept and enjoy the day.

Thankyou for the jokes, which I’ll put on the blog. I’m still puzzled how the Eastbourne Hospital oncology department has a zero record for people that don’t turn up for treatment – do they all survive each month?

My obscure thought for the day is ‘What would you do if you had one hour left to live?.’

Here are some results –

Sarah would listen to Mozart for Meditation and feast on her husband Simon’s chicken dinner with garlic, lemon and thyme.

Simon, Sarah’s husband, would play Rachmaninoff Vespers Songs for Cherubin and look at the sky.

Sue, my wonderful masseuse would go and sit by the sea and wait – whatever the weather.

Mark wants to listen to Elvis singing His hand in mine, with our patio doors open and eat smoked salmon and sashimi with a glass of Rioja white wine.

I want a helicopter to fly me to the derelict dockland area in Dieppe to Comptoir a Huitre where the chef has a plate of solette meuniere ready with some chilled white Gascony wine.

Betsy would phone and email all her family and tell them she loves them.

My friend Sue would go and look at the sea and walk about and do very little,

My sister Isobel would want family around and ‘To be in a light filled room with lovely fragrant oils . Rose, geranium, lavender, frankincense and listen to favourite music , ‘Let it be ‘ and ‘Bridge over troubled water’ then hear a beautiful poem ‘The owl and the pussy cat ‘

Giles, her husband, would listen to Starman.

Hermione, Isobel and Gile’s  daughter would like to dance to ‘I follow rivers’ and eat cake and be in the sun.

More responses came in

Laurence Abalone, Scallops in Ginger and Moule Marinere washed down with Puligny Montrachet, whilst watching my daughter showjumping with the Bespermark mountains or the Med in the background here in Cyprus, depending where you gaze….

Des – The last hour? Some music to play:-

Weather Report by the Tennors.
Esta Navidad by Jackie Washington.
Yes it is by The Beatles.
Food to eat also struck a chord, pun intended!
Gravadlax, steak diane and creme brulee with poached rhubarb.
or
Sourdough base pizza with slices of new potato, cooked beetroot, capers and blue cheese and strewn with rocket followed by semolina pudding with nutmeggy skin and raspberry jam (unseeded of course)
or
Pork belly with crispy crackling, lashing of English mustard, creamy mash potatoes, cumin flavoured carrot matchsticks and cavolo nero followed by tarte tatin with creme fraiche.

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Philip Carr Gomm


This is the second visit by Philip to our house by the sea, and this time, in brilliant sunshine.

The first visit came in torrential rain and storms, just after Mark was diagnosed with an aggressive cancer and given weeks to live.

Philip left us with great wisdom, which we turned into our ‘Ganesh moment’ where we sit quietly round our table and light our ‘kitsch’, turquoise elephant candle and wait for someone to speak about the moment, or sit in silence. Despite the raised emotions, we leave feeling very calm and Mark’s face relaxes and looks happy.

We met Philip when he gave a talk at Villa Events in Lewes in 2011.

I came away with three important messages

  1. Walk the land and enjoy the moment – live in the day
  2. Discover the ancient histories of the landscape
  3. Celebrate the seasons and pay attention to how the land and the plants change with the year.

The magical landscape of Sussex has little known stone circles, ley lines, powerful alignments to historic monuments and ancient folklore. Philip, the chief druid, talked about his work and shared his knowledge on the stories and legends of the ancient sites of Sussex. We learnt about giants throwing stones at each other across the South Downs Way, and the eight ancient rituals to celebrate the seasons. Many of these are held on the Tump at Lewes, when a group gathers to pipe in the dawn and acknowledge the power of the earth.

Today we widen the discussion. Mark shares that he is not afraid of death, just sad that he is leaving us all behind. He hopes that the tiny silver elephants that he has commissioned for us will give us strength and contact when he has gone. Philip talks about people visiting in dreams.

By coincidence, my niece has just sent a text that she had a visit from my father in a dream, and that he came to reassure her, and she hopes he will come again. So I guess you never know. As Philip say, the world is all energy that swirls around.

The elephant in the room today are the issues that surround us. I mention despair, and Philip suggests we spend time just thinking of it, and like pain, we may be surprised how a resolution is found.

It’s called ‘paradoxical intention’ – I write notes on it – where ‘what you resist persists’. A concept developed by Dr Viktor Frankl.  We need to focus on the tension or problem, not resist it, and discover how to let it go.

The brain, Philip says, if tuned into the bigger picture. I just hope we both can learn this new skill.

Viktor Frankl wrote of his time being marched to a concentration camp –

My mind clung to my wife’s image, imagining it with an uncanny acuteness. I heard her answering me, saw her smile, her frank and encouraging look. Real or not, her look was then more luminous than the sun which was beginning to rise. I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth – that love is the ultimate and the highest goal to which Man can aspire.

I understood how a man who has nothing left in this world still may know bliss, be it only for a brief moment, in the contemplation of his beloved. In a position of utter desolation, when Man cannot express himself in positive action, when his only achievement may consist in enduring his sufferings in the right way – an honorable way – in such a position Man can, through loving contemplation of the image he carries of his beloved, achieve fulfillment.

Viktor Frankl survived the war but his wife died in Bergen Belsen.

What wise words I will take with me for today.

Annabel and myself are going on Philip Carr Gomm’s Spring retreat

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February 22nd A garage of spirits


Thursday has been a clatter and clutter with a medical day and more people have been added to Mark’s email list. Thankyou for your replies and stories of all the cocktails you have had and intend to try on your life travels.

You may puzzle why Mark stores his bottles of spirits in the Seaford garage. And what he intends to do with them all. He says have a bottle party but don’t bring your own. But anyone drinking that quantity might be vomiting all the way to Beachy Head, which means lifeboats, coastguards and helicopters if you trip off – and at Splash Point outside our house, we have regular visits from all of them.

As part of his working life passion, Mark has collected classic spirits from around the globe and he’s stored them in dangerous places – the first being the top of our home in Wimbledon. If there had been a fire, the whole house would have exploded as a giant, flaming cocktail, spraying as far as the tennis courts.

After dinner parties, special guests that showed an interest were invited upstairs to taste the latest arrival.

When we moved to Lewes, hundreds of bottles were banned from our home and moved to storage space opposite Lewes station. And put on shelves. I phoned one afternoon as he was loading up only to discover that his whisky collection was about to topple and crush him if I did not arrive quickly.

Quickly! he shouted. All bottles were rescued and the shelves were then properly attached to the wall to prevent further falls.

The bottle collection shifted again when we arrived in Seaford – this time shelved in the back of the garage behind a black curtain, and on dark nights Mark sidles off down the steps for a torchlight search for something delicious for his evening drink.

But these bottles are really used for his tastings which have been delivered all over the world. He tells the stories of the history of gin, rum, vodka, whisky … and celebrates the skill and passion of the makers in creating their product.

You can read these tales in his last book Spirits Distilled on Amazon. If you buy it from Ridgwell Press, the money goes directly to him.

spirits

10 years ago when we moved to Lewes, I suggested he develop his own South Downs Gin. He trekked over the Downs with the local herbalist and collected suitable botanicals – wormwood, broom, honeysuckle, hawthorn … A small still was bought to distil and infuse flavours. But the gin never got beyond a few drops of spirit –  Mark had spent too much time marketing Smirnoff, Croft Sherry and Maker’s Mark to want to spend time persuading people to drink his Sussex Gin. 10 years ago we were way ahead of the trend!

 

This bit comes from Mark

Today GP tells me in all my medicals of blood and other samples right up to December 2017 I was in the best of health. I’m sure this recent arrival – a new kid on the block with appetite and attitude but no strategy. Whereas I have strategy and thankyou Ken for giving your professional assurance to Jenny that what tastes good does you good. I add to that what feels good … – I never saw the film 50 Shades of Grey, but read today there is no problem that cannot be ameliorated with a hot bath and hot cup of tea. That’s where I’m off to now with my tub of sodium bicarbonate.

 

Tonight is a meet with Southover Bonfire’s unrivalled action team to hand over the May Fayre – please put in your diary for Sunday May 20th. Mark

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February 28th The elephant in the room


After dinner last night Mark and I sat with his sister Janet and brother in law Bryan around the table and lit a large, turquoise elephant candle called Ganesh. A strange ritual for us.

Mark says the candle reminds him of something he might have won as a child from the Southend fairgrounds.

Bryan comments that the candle is the elephant in the room, an intruder that he was not keen to meet.

Mark describes this visitor in his own words.

‘The sea has been calm for a week but today it is becoming turbulent as the snow storms approach. My thoughts turn to the disruption brought about by my intruder. It seems to be eating a lot, taking more than its share, so its disrupting my body and affecting the things we can do together.

I’m now enjoying delicious food from Jenny, Annabel and Janet after a sensible talk by the hospital dietitian who says I can eat and drink anything I like. It’s a pity that the intruder seems to like my diet too.

I feel at the moment that we can win despite the weight loss and lack of energy and I’m not suffering any other effects from chemo treatment. ‘

Shingle shifting in Seaford

As we look out over the sea each morning, six yellow dump trucks begin their 10 hour shift, driving the shingle from the groyne at Splash Point and moving it westwards to Newhaven harbour. Men arrive early in Ovenden vans, wearing hard hats and dressed in orange workgear which reminds me of Guantanamo bay.

Dumper trucks in Seaford shifting shingle

‘We’re here for five weeks, love – to stop your house from flooding.’ Climate change brings many storms to Seaford and in past years stones blew off the beach and smashed windows.

Storm Emma is due to hit us on March 1st ‘bringing strong winds and heavy snow.’ The Met Office says that naming storms helps us ‘prepare in advance and makes us more aware of severe weather. ‘

Try opening a car door on Seaford seafront – there’s no preparation for that!

Our terraced house on Cliff Close will no doubt shake and rattle, leading to sleepless nights.

I’m thinking of renaming are block Cliff Getting Closer.

Reply from Julian

The elephant ritual sounded such a brilliant combination of close friends, significance and laughs. Hey, who cares what it means if it made for a memorable evening …and anyway if Hannibal thought elephants would help him scale mountains and manage adversary then it sounds like a good plan !
From Jess
This is lovely. Your writing is beautiful. To describe something that is causing you both so much unhappiness like this is inspirational. Jess x 
Des Thank you for the emails.  It’s good to hear how you are coping, it seems to bring us closer to you.

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February 28th What’s in a name


Sometimes when you least want it, words and phrases pop up to remind you of reality.

I’m sure you remember Basil Fawlty telling staff ‘Don’t mention the war  when he had German guests. Fawlty proceeded to mention the war at every opportunity, mistakenly ordering ‘a prawn Goebbels, a Hermann Goering and four Colditz salads.’

Last week, for a treat I went with Melanie to the Depot cinema in Lewes, to watch the live streaming from the National Theatre of Cat on a Hot Tin Roof. As usual, I had done no research on the plot line. If only I’d texted my great friend Sue, a retired English teacher who had taught the play to her A level students.

This is her precis after I moaned on the phone about my challenging night out.

‘Cat on a Hot Tin Roof – it’s about family, expectations, failure, money, hidden homosexuality, denial and cancer.’
I lost count of the number of times the c word was mentioned in the gruelling second half but I wanted to creep out and make the windy, cold drive alone to Seaford where Mark was waiting with our great friend Simon in our cosy house.

In preparation for Storm Emma I bought a hand knitted bobble hat from a charity shop.  But first I had to remove the swing tag which in bold letters tells me ‘More than half of all bowel cancers could be prevented each year.’  And I only bought it to keep out the wind.

Our very kind Doctor Murphy gave us prescription pills which are packaged in a neat paper bag from Boots. To open the bag, first unstick the top and then read
‘QUESTIONS ABOUT CANCER CALL THE MACMILLAN SUPPORT LINE FREE ON 0808808000.’ Ahhh

When we sold our Wimbledon house to a Chinese buyer, 8 was an auspicious number – she made 8888 of £s in her offer. Seems 8 means prosperity, success and high social status. Maybe I’ll ring Macmillan and ask the 8 question.

And today, the Times has a centre spread on ‘Cancer felt like being hit by a train… ‘
Our newspaper is delivered at 7 am, through rain and storms to our isolated letter box down a windy alley by our amazing Seaford newsagent. It’s Mark’s favourite part of the day to read the news, overlooking the sea with a pint mug of hot tea.
The article by Kate Figes tells of cannabis oil and oxygen therapy and the book by Bernie Siegel on ‘Love, medicine and miracles’ which talks about three groups of patients and the 10-15% group of ‘exceptional patients’ do research and ask questions and do better on treatments.

lovemedicinemiraclesFiges has made cancer her new journalist assignment, so good luck to her with that.

But the best part of my day or even week is to learn that the amazing chef Jonas Juchli, who is working in the Seychelles on Mahe cooking for international guests, has found me a coco de mer which is growing on a palm tree in Anse Lazio beach.  He’s named it Jenny, it will be ready in 3 weeks and he has got a coco de mer passport to bring it back to Europe. This huge double coconut looks like a female Kardashian buttock and is the stuff of legend. People who found it floating in the sea thought it came from the garden of Eden. It’s the largest seed in Kew Gardens’ millenium seed bank and I have wanted one ever since I saw a huge specimen 30 years ago in the Banks Collection on a private visit. So Jonas thankyou and come back and cook us your incredible food.

Mark says

Today we had a nurse come round from St Wilfrid’s Hospice and it is really a great relief to know that Jenny has 24 hour telephone support and staff that are able to help us. Seaford seems to be a microclimate in Sussex from Storm Emma. People are not sitting in deckchairs on the beach but so far snow and storms have not arrived. Seaford is a gateway to the sun and we watch the ferry arriving from Dieppe.

Reply from Siobhan

Prayers for you are just as important. As we all know, watching someone go through illness can often be worse as you are so helpless.Stay warm. Big hugs to you both and although we have been remote lately, we are always here for you. Xxx

Reply from Eileen
I thought of you as I walked on the Common… Every blade, leaf tinged with white. Spectacular. Tho COLD. Wilfred loved it. But snow ‘caked’ between his furry toes/pads which is painful. So sadly couldn’t do a deserved real walk.

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2nd March The battle of the banks


Today has been a battle of bureaucracy

But first the good news. Seaford, as you know, is in the micro-climate on the Sussex coast and we are unaffected by Storm Emma with virtually no snow or high winds.
One local wag said
‘If
I hear just one more reference to The Beast From the East I will personally give them A Sock From The South’.
The weather forecast has screeched alarms in the last few days but here at Splash Point we are made of stronger stuff. In past months the house has been blasted with unnamed storms, the windows rattle and the roof wobbles like Rolf Harris’s didgeridoo. But last night, all was calm.

And more good news – today I received 3 letters – one from HM Revenue with a cheque for overpaid tax – if they send me a bill, I pay it.

Another to tell me that I have normal results from my bowel cancer screening, ‘but no screening test is 100% effective.’ Mark’s test a few months ago was also clear.

And a third from the brilliant Lisa Joffe who paints Sussex landscapes with her improvisational movement of oils and charcoal over canvas. We have two huge dramatic paintings which occupy most of the lounge walls – they match the colour of Seaford’s spectacular sunsets with swirls of orange, grey, blue and black. The picture shows Mark’s choice which he says is like the Fighting Temeraire by Turner. I’m not going to show Turner’s painting here as I got fined £1200 by Stock Photo for showing a radish picture on this website 10 years ago.
Watch her fabulous video as she explores Hope Gap

Lisa Joffe’s painting – Mark’s choice that he says looks like The Fighting Temeraire by Turner

But today was the battle of the bank to get Mark’s HSBC account changed to both our names. I drove him in on Monday to be told that there were no appointments until Friday. We spent hours on the phone helpline with no effect.  My chat on their Customer Support was terminated with  

‘There is no point in further conversation, it would be better to contact the telephone banking team and get support from them.’

When I checked their adverts and discovered a perky HSBC Youtube video starring Richard Ayoade with the tag

‘HSBC UK, we believe that no man, or woman, is an island. Together we thrive,’

So thanks to Sarah for online advice, I wrote a comment on the website.  A swift reply came to my email asking for my address. My Youtube posting under the video seems to have been hidden.

The bank account has now been changed so I will have access. But the days of an available bank manager or human help have gone – we are digital beasts tapping in code numbers and getting voice recognition to help us in the future global community as we skip into the sunset.

 

From Mark

Today Gerry Wadman of Sussex Sports Cars came down – one of my first great friends that I made in Lewes. I drew attention to myself when I drove to the tip past his garage in my Mustang. Gerry has been my wonderful partner in buying and enjoying some fabulous cars and he’s offered to take me for a spin in an E Type on a drive to Brighton. For the first time in my life I have no cars, so thankyou Gerry – maybe we’ll be at Goodwood Classics later this year.

One of the cars was a Mercedes silver 260 SE Convertible 1967 with red leather interior that Gerry kindly introduced me to. It was owned by a Graff diamond dealer and this car gave great pleasure to the lovely Isobel, my sister in law, when I drove her to hospital  for her first chemo. I then took my wonderful friend Axel and his wife Sue from Wimbledon across the South Downs on a sparkling summer’s day. We drove round Beachy Head, down to Birling Gap and on to Lewes with the roof down through some of the most scenic routes in Sussex. So Gerry keep the E Type engine warm for our spin.

Supper is yellow fin tuna ceviche, followed by chicken, mushroom, spinach and cream pie with filo topping cooked by my daughter Annabel. Served with Taittinger and Rioja.

Reply from Bryan
Glad eventually you got some human somewhere who was able to help getting the bank account sorted. Prayer for you
GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE,
COURAGE TO CHANGE THE THING I CAN AND WISDOM TO KNOW THE DIFFERENCE.

Reply from Sue
Mark we loved your piece about the drive that afternoon in your special Mercedes car …..it was amazing …the scenery, weather and company provides us too with happy and special memories! Thank you for writing about them!

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