7th March An Away Day


7th March An Away Day

For the first time in a month I can get away from Seaford. Mark’s sister Carole and husband Tony are staying in The Sea House so a night  in London is a welcome diversion.

Standing at crowded Haywards Heath station, after we’re tipped off the London bound train the announcements are boringly repetitive.

‘The train from … is delayed/cancelled

‘Southern apologises for the inconvenience this may cause you

‘Thameslink apologises for ..

‘On March 12th the RMT union are taking strike action – everyone apologises and check the website before you leave home.

‘Anyone hoping for a relaxing lunch before their afternoon theatre forget it – Southern apologises ..

And anyone booked for Hamilton The musical, forget it and do something fabulous instead.

It’s not a sell out as they claim – I booked tickets a few days ago. And if you want to leave at half time because you do not want to stay in your very expensive seats and listen to such ghastly hip hop, they put yellow barriers in your way and say you can’t leave. Until there are enough of the exiting audience shouting

‘Let us out’ very loudly’ and ‘do I look like a ticket tout?’

Friendships balance the turmoil of the last few weeks.

The drama has been running a month and I’ve missed London. Seaford may have seas, storms and seagulls but it’s no substitute for our many friendships, easy travel and exhibitions and art galleries.

First a visit to our Wimbledon flat which is being refurbished with new floors, plasterwork and redecoration. The place is a dust heap but work is progressing quickly with a deadline of March 21st which I hope Mark can visit to stay.

Then catch up with friends. The light, bright bustle of Carluccios by the river Thames lifts my mood and Eleanor, as always has supportive help and advice. She wisely told me to get on with Power of Attorney so that I can operate banks and stuff if Mark dies. A plate of crispy squid, a bowl of steamed spinach and a glass of Gavi from the wine growing area where Antonio grew up – then another and the future seems possible.

On top of the 93 bus Wimbledon Common glows in the spring sunshine and no doubt the purple crocuses will flower in Cannizaro Park. I’m staying in Linda’s cosy house and like me Linda is a well deserved airbnb superhost.  Unlike me, she’s not threatened with strike off as I cancelled bookings due to Mark’s illness. Harsh business renting rooms.

We share stories of happy times, odd Lancashire recipes and photos at her birthday party where Mark and Axel both look so handsome.

Then onto Bill’s to meet my great travelling companion, Eileen whose energy defies the National Grid.
When Mark and I moved to Lewes in 2008, our Sunday breakfast was a full English in Bill’s first restaurant and grocery shop. Who would have thought that 10 years later there would be nearly 80 Bill’s around the UK. He once told Mark that Wimbledon was one of the most profitable, and the venue is a strange choice for a country themed eating place, down a dull shopping precinct lined with white plastic windows next to Morrisons and the Odeon cinema? But once inside, the nourishment of the Lewes interior floods in. Chandeliers, stripped wooden tables, green, chipped enamel teapots with wired orange gerbera daisies and orange and pink raffia dangling from shelves like a Moroccan souk – Bill once told me his favourite colours were orange and pink, and he grows those colours in his garden.

My favourite tins of Gordal olives come from Bills – plump, huge, green and meaty – and I’ve stocked up with plenty – essential for our guests with their evening drink visit to Seaford.

Eileen is very much onwards and upwards and lifts my spirits with her challenges. I show her the HEAT card that the oncologist says I must read to check on adverse symptoms after chemo and we agree that the medical terms defeat us.

HEAT card for Neutropenic deaths

My Bill’s hamburger and two glasses of chilled Albarino and the future seems brighter.

She’s excited by the Ocean Liners Exhibition at the V&A and I hope I can get to see it before it closes in June.

I catch the early morning train and arrive in Lewes for a bacon sandwich in Bill’s and see Charlie, my grandson, cycling by in Simon’s bicycle, then I’m joined by the ever excitable Daisy and her mum Tamsin which is a delight.

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15th March Second chemo underway


From Mark

After a couple of days of rain and sea mists – yes it can come even to Seaford – the sun is out in a clear blue sky. Seems so strange to sit in hospital looking out at the lovely day outside and yet look around inside and everyone’s sitting and lying around with litres of poison being pumped into their  bodies. This time for me it’ll be a third more than the first batch so slightly concerned at the possible after effects. And you should see the size of chemo pills I need to take over the next two days. In the old currency they’re an inch long.

Fun to confirm how taking chemo in hospital is not a natural state. Our great friend, John Downie has long tried to get Jenny and I tuned into the perfect tic toc required to keep Jenny’s grandfather’s old clock going in New Road. And to John I can say, that the tic tic of the chemo as it’s pumped in is certainly not rhythmic. It’s completely irregular.

Great words of wisdom yesterday came from Philip Carr Gomm, the Chief Druid which were very timely. Philip brings a wonderfully spiritual insight into everything. He said not to fight pain or despair but to embrace it to reduce its strength and that certainly explains a lot of my current experiences. My mind is completely decluttered of all that’s bad and distracting. Instead sitting here with the constant background of the waves opens up all the wonderful values of nature all the way to the horizon.

Back home after chemo and with doors open even at 6pm. Thank goodness for the microclimate of Seaford. Then supper with Jenny, Simon and Annabel.

Woke up this morning with more energy than for weeks so maybe this is what Adam calls his green day straight after chemo. I shall make the most of it with today’s acupuncture and then maybe a trip to Brighton with Annabel and Simon to visit a ‘vape’ friend to explore a more direct way of taking Nigella’s liquid. This really has become a trip through so many new experiences

 

From Jenny

The hospital is a giant octopus swallowing us all up as we stream through the doors. Walking, limping, shuffling, zimmer frames and wheelchairs. We disappear down the long, hygienically cleaned tentacles to arrive at the oncology sucker end to find a full Outpatients area.

Walking past the closed Interview doors with signs ‘Interview taking place. Please do not disturb‘ reminds me that a few weeks ago we sat there and heard the medical pronouncement in language that still is not clear.  More tense young and old faces strain around the experts for their results and on the table, a coloured box has tissues pulled out in readiness.

A nurse brings more chairs to line up in the corridor as patients are standing, waiting for treatment.

The pen-smeared whiteboard has announcements.

‘1063 people visiting our clinic last month.. 0 (that’s zero) did not turn up for appointments.’

I wonder if they count patients that have ‘passed on’. Surely they must get some surprise cancellations?

Two jolly, grey haired ladies chat about their chemo.

‘My friend sailed through it and lost some weight. I’m really strong, never been ill, so I’m expecting good results.’

Another talks of her cruise to Norway in a few weeks. When Mark tried to get travel insurance, cruises were not covered and he had a ‘precondition’ so they needed to get a doctor’s note before they would consider us..

The day time TV choice in the waiting room shows High Court enforcement officers visiting sad debtors running unsuccessful businesses. Then another soul sapping  programme on break ins with burglars being caught on CCTV.

There’s the usual reading matter in the racks of Macmillan Cancer Support – ‘Give up smoking, Body image and cancer, Travel and cancer.’ Waterstone’s could display them under Misery Reads.

Why can’t we have a Cancer Joke Book? Here’s one from www

Old man goes to the doctor. The doctor says “The test results are back, and I’m sad to say you have cancer and Alzheimer’s.”. The old man says “Phew! At least it’s not cancer!”

Or some Poems in the Waiting room like I see in the dentist.

Two hours after arrival, I leave Mark still waiting for treatment. There are two people ahead of him, and I find the injection of toxins too traumatic to watch.

If you’ve got any jokes or poems that might please, do email us!

Joke reply from Sarah

“People who joke about cancer have no sense of tumor” .

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Mark’s Photos


markkittiwakes

Mark searching for kittiwakes

charlieandmark2

Charlie and Mark play hangman

fishing

He didn’t catch anything!

Udaipur

Udaipur fabulous lakeside hotel

 

bonfire

Lewes bonfire – Mark on the left

carsindiachair

Jenny Mark and Steve after the Kythira walk – we found steps for the football team awards

dieppe

Anne Marie and Pierre Bertin with Mark with broken nose having fallen over French pavement

india2Sicily

patanddes

Pat and Des and Mark in Dorset sunshine

japan

Annabel and Mark in Japan with cherry blossom

olympic

Paralympics

turkey

Walking in the moonscape of Cappadocia

card

Kings students in Wimbledon 25th March 2018

E type day out 21/3/2018

On top of the world

E type jaguar day out 21/3/18

Mark and Axel at Linda’s birthday party

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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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Chemo cancelled March 13th


Ten minutes before driving to the hospital yesterday for Mark’s second and bigger dose of chemotherapy he gets a phone call. The oncologist has forgotten to write the prescription and she is out of the country and can’t be contacted. Mark’s cancer nurse is not in today, and no, there is no-one else to speak to. Ring tomorrow and we may be able to update you. I wonder if these people have ever experienced the wait and hope for a chemo treatment, and the impact, when you prepare mentally for the challenge, to be told you are cancelled.

Torrential rain is falling which has washed off the seagull poo from our windows.

We have time for an outing but this part of Sussex is closed, unless you want to be blown off the cliff walks.

The one journey we do make is to St Wilfrid’s Hospice in Eastbourne – this may seem a strange choice, but I wanted Mark to visit and see its modern design with its corridors filled with impressive artwork. At such a time, I love the peace, calm and kindness of staff. Unlike the hospital, people have time to talk and offer positive help but we need a doctor’s letter to be able to use the support when needed.

To avoid the storms blowing in from the sea, I drive back on the sheltered, picturesque side of the South Downs, past the road that runs below Folkington church where the food writer Elizabeth David is buried. We were so excited to discover her beautiful headstone which is carved with sprays of olives, figs, lemons, artichokes and aubergines, with a large marmite pot in the centre – the origin of the Marmite name and glass shape. On one of my birthdays, Mark and I toasted her there with champagne and canapes – I’m sure she would have approved.

Inscribed at the headstone base, ‘Her books on cookery brought joy and enlightenment to food lovers all over the world.’

I turn off the A27 and drive past the famous chalk figure of The Long Man of Wilmington cut into the steep slope of Windover Hill. He holds a stick in each hand as he gazes out over the ancient fields and downland. One year he was given a 20 foot large chalk penis, which was swiftly cleared to save his dignity.

Then on through rain soaked lanes, overlooking the flooded water meadows of Alfriston and past the signs for Toads on the Road at night.

Toads on the road Litlington

‘What do I do if I suddenly run into them?’ ‘Squish’ says Mark.

On past  Litlington Tea Gardens opened in 1870, which serves delicious Victoria sponge cake when the tourist season begins, then a glance right to the Litlington White Horse high on the escarpment with views over the sodden Cuckmere Valley and up the hill and home to Seaford for tea. Only Mark can’t taste it any more, so he has cold goat’s milk.

 

Cooking is my creative respite but Mark’s new diet puts restrictions on our usual meals. No brassicas, onions, seeds, nuts, high fibre ingredients like celery, oats or skins of fruit. The doctor has said to cut down on the meat as the chewy bits are so indigestible, but Mark’s iron count is down, and meat is an easy source. Our local Seaford butcher, C. Walbrin displays a pile of pigs’ trotters in the window and the man in front of me has bagged five of them. Never to be outdone, I choose 2 small ones. ‘What do you do with them?’ ‘Boil them for soup.’ ‘How long? ‘ Long as you want’ – he heaves his butcher’s knife to cleft each one  in half.

I’ve just reread Animal Farm and as I gaze at the yellow-skinned trotters with their red horny toenails laid out on my chopping board I wonder if I could rewrite the ending. Imagine that now both of Napoleon’s front feet are boiling in my saucepan. It serves him right for walking on his hind legs and pretending to be human. I’ll doctor the famous phrase to  ‘All NHS patients are equal but some are more equal than others – but only if they have private medical insurance.’

The trotters make the strangest grey liquor which cools to make a delicious savoury jelly, The man with the five big trotters might make some brawn but my little trotters have no muscle meat on them at all – poor little piggies.

Next on the butcher’s slab is a pile of lamb’s breasts and he’s busy removing the bones, then stuffing and rolling the meat to make a roast breast of lamb joint. He cuts his rolled breasts into tiny portions to sell to single pensioners for their roast dinner.

‘I thought thought breasts of lamb were sold to the doner kebab factories’ I ask the butcher.

‘Maybe, but we buy in whole animals like lamb so we get all the cuts and offal. And local Seaford people love it.’

A pile of white tripe that looks like the remnants of my grandmother’s crochet bag might be on my cook list for the future. But the shredded dried bits of pigs’ ears hanging in bags are strictly for for dog owners.

A whole breast with bones costs £3 and weighs in at 1.5 kilos – that’s £2 a kilo and mighty cheap. I’ll slow roast it with lots of rosemary and sea salt so that the meat is tender and soft to eat.

At home I look up a recipe for breast of lamb and discover that Matthew Fort has recreated Elizabeth David’s Breast of Lamb St Menehoulde’

Just as well she didn’t have little lambs carved into her headstone overlooking all the pregnant sheep on the South Downs.

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March 11th Acupuncture and more


Last week was week 3 after chemo and there was a changing of the guard inside and out. Outside, my elder sister Carole and Tony stayed here for 3 days to help with ‘guard’ duty! It was lovely to have them stay and spend more time in company with them than ever before.  We went to the wonderful Depot cinema in Lewes to see Mercy, and what an intensive experience that was, particularly going back to our seaside home afterwards. It’s the story of Donald Crowhurst who was the amateur who set out to win the first single handed round the world yacht race and became obliged to deceive before committing suicide instead of returning home to ruin. It was won by Robin Knox Johnson who donated his prize to Donald’s widow before setting up Clipper Ventures to allow amateurs like me to enjoy the experience and in greater safety.  Gladly Simon who saw it with us is now assured to be extra careful when he takes to the water in his boats future.

Unfortunately even the ultra comfy Depot was not good enough for the man who’s lost most of his backside padding so, courtesy of C and T and Seaford’s extensive range of age related comforts I now have a comfy cushion. Inside, the changes have been acupunctured to increase my white blood cell count before next week’s second and increased dose of chemo. It was a first time for me and all the better for the fact that my acupuncturist comes from my birthplace, Southend.

As well as acupuncture he gave me a session of moxibustion, forming mugwort leaves into a cone and holding the burning leaves over the acupuncture points as a liver tonic and to be toxic to the cancer cells. Apparently mugwort can also induce intense and vivid dreams but no sign of those yet. No one can accuse me of not be willing to try anything.

From Jenny

Seaford is a challenging, end of the world, neglected seaside place to live. Popular with elderly people who downsize and buy cheap bungalows or flats and live off the savings. We moved here 2 years ago after our Lewes house purchase collapsed days before exchange and planned to stay here a very short time.

The town’s motto is ‘In the wind strength’ and the gales test my walking power along the cracked concrete path that leads along the beach into town.

The Shoal at Seaford at sunset

Mark loves sitting in our lounge with its wide, glass doors overlooking the sea and the ever changing weather. Sunlight streams onto the sofa where he basks in the bright light. Only the herring gulls interfere with the view as they fly past and shit down the windows.

As our lives change with his illness we’ve reaped the benefit of the large, elderly Seaford community. Mark is getting so thin that it hurts to sit on our dining chairs, so Mark’s sister Carol and husband Tony pop into the local Mobility shop which is packed with ‘daily living aids’. They come back with a Proform cushion designed to ‘eliminate discomfort’ which Mark agrees is perfect. Not many high streets could claim such a wide range of walking aids, powerchairs and shower stools.

The Cancer Research shop accepts requests – ‘have you got a tambourine for my grandchildren?’, ‘Any Thomas trains for them?’ Each week as I declutter, I leave gift aided, labelled bags in the huge donation mountain that the ladies sort at the back of the shop. The residents of Seaford indeed have too much stuff!

I recently gave a Russian oil painting to them which did not suit our seaside home – they cleverly sold it at Eastbourne auction for £270, so we have rapport.

Seaford residents have the biggest choice of chemist shops in any town I know. Kind pharmacists have offered advice on Mark’s medication as we now have a medical and alternative box of bafflement.

The wife of our Seaford greengrocer is a brilliant cook and the shop’s fridge is full of inventive home baked cakes, soups and quiches. Orange polenta cake, baked cheesecake and chocolate brownies are constant favourites.

And there’s Paul the fishmonger with ever changing local fish – I’ve marinated squid in olive oil and garlic which Mark says is delicious. Skate wings fried in butter and tossed with dill are a local delicacy. And there are plenty of scallops and smoked salmon to choose from.

In this medical maelstrom, my online education business continues to thrive, with little or no input from me.

Two emails have made me smile.

Jake, who must be a student, requested that we add these foods to our ‘amazing Nutrition Program database’ –

Wagyu steak, Iberian ham, Albino caviar, White truffle, Gold leaf

Katie, my incredible support, emailed him asking for the cost and nutritional information for 100g. And then emailed the teacher to ask if her students were using these ‘exquisite ingredients.’.

The shocked teacher replied that she could not believe that he had sent the request and ‘will give the student a severe reprimand in the morning.’

I sent her an email reply

I think it is an inspiring choice from a student that clearly knows something about food. If he was a member of the Guild of Food Writers like me, we would celebrate his choices.

So please don’t reprimand – let us enjoy his enthusiasm or joke and can he suggest a meal for me based on these ingredients – albino caviar is $40000 per teaspoon but I have eaten all of the others!

Another teacher emailed

In 2002 we bought a Textiles Pack from you with lots of textiles samples. Unfortunately they are worn and tired looking now. We would appreciate if you could kindly send another pack.

I didn’t email back but this would have been my reply.

‘Dear teacher – we are glad that you have had 16 years use of your textiles pack. I wonder if you had bought a pair of trousers from Marks and Spencers in 2002, would you take them back and say they were ‘worn and tired’ and expect a free replacement? And anyway, we no longer sell the fabric pack.’

Katie gave her an official reply which was more polite!

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March 6th Blue Badge Award


From Mark

Last night Charlie my grandson stayed over with his dad. This morning at 6.45 am when he saw the huge six wheel dumper trucks moving the beach, he told his father, Simon, that he wanted to stand watch with gran gran and miss school. Simon said that was not possible. Gran gran said she was a qualified teacher and could do home schooling, but Charlie went off to his wonderful Lewes school, as is proper.

So Seaford is definitely increasing its appeal to all comers – young and old alike.

Received lovely pictures last night of the 2 cocoa trees we planted in St Lucia in December 2016. They are a thriving 7 feet tall with wooden tags for Charlie and Daisy Ridgwell on each. Hopefully we will have some future Hotel Chocolat to share.

Sun has come out today and a good thing about the winter is the air is so clear, we can see the white cliffs of the Isle of Wight on the horizon. South of this island the winds often fly straight to Seaford from America with no landfall in between and that’s when Jenny would prefer to be inland.

From Jenny

So now we are Blue Badge holders with a techie parking badge to put in the front window of my car. Freedom of the road for us, or at least freedom to park on any double yellow line that we choose.

Here are some ideas –

We can

  • Drive to Brighton, visit our favourite restaurants and park outside. No number 12 bus or cancelled trains for us.
  • Park anywhere in Lewes – a triumph after all these years of worry
  • Park in Cliff High St, Lewes and sit and watch my car from Bills, with no stress

Perhaps one of you can tell me the most spectacular Blue Badge places so that we can plan our day trips around Britain.

 

March 6th is a follow-up visit to the oncologist to check on how the chemo is going. I hate the abbreviation to chemo more than I dislike university becoming uni, but for different reasons. The drive to Eastbourne Hospital over the South Downs is always refreshingly beautiful and the many sheep in the fields may be ready to lamb soon. I have no idea when lambing begins, but somehow they looked fatter and more maternal.

Our hospital check in has gone digital and the human welcome counter has the shutters down and is replaced with a Patient Check In Screen that you Touch to start.

The TV screen on the wall flashes cancer help websites and tells us that the doctor has at least a 30 minute delay.

Screens to make me scream!

Time for me to play Rag’n’Bone Man Human again very, very loud. 470 million views – 1 million from me. And he comes from Uckfield 10 miles away and was expelled from Ringmer school – so Charlie and I could have bunked off today.

We sit with silent patients on blue plastic seats the colour of forget-me-knots waiting our turn.

Want something to read? Choose from the CANCER wall of leaflets

  • Weight management when you have cancer
  • Want someone to talk to about cancer?
  • Travel and Cancer
  • Signs and symptoms of cancer

I pick up the leaflet Wind, gas and bloating and learn that brussels sprouts and broccoli are big culprits.

If you’ve reached the oncology department, surely the signs and symptoms have been recognised.

 

The oncologist is as always quiet and calm and checks her computer screen. I might like her if we met outside this hospital room without a view.

‘How has it been since the treatment?’
Today Mark is robust. ‘Well I’ve reached the weight my doctor told me that I had to lose.’ And I haven’t lost weight in the last six days. And I’m feeling OK.’

She looks at me ‘You are quiet – anything to add?’  Only to shout ‘Listen to Rag’n’bone Man.’

So one gold star for Mark for reaching his healthy eating target and one for me and Annabel for feeding him the highest calorie, nutritious food he chooses to eat. I’ve been told by the dietitian to increase his fibre. The oncologist disagrees and supports Mark in being cautious.

Now we reel into chemo discussions and the plan to increase the dose on Monday.

I’ve tweeted Rag’n’Bone Man to see if he is back in Brighton performing – if so we’ll park on the double yellow lines outside and wave our Blue Parking Badge.

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