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.
‘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.
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.
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.
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!
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.
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 –
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
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.
I’ve just made Mark his first Manhattan in a proper cocktail glass – first time for me, one of many for Mark as it’s his favourite drink. He’s found his finest bourbon from the garage, with dark, red vermouth, a splash of Angostura bitters and ice, and I’ve given it fifteen stirs in a tumbler before pouring into the posh glass beloved by the bartenders that he has trained over the years.
Mark has agreed that it’s a good idea to send progress emails. His hospital visits began on February 8th 2018.
Today, February 16th, we start the chemo sessions – unknown territory for us, and unknown effects.
Mark and I are staying in Seaford – he grew up by the sea and loves looking at the water through storms and sunshine and is a cloud expert able to read the day’s weather.
Our journey to hospital passes through the most magnificent countryside in England – the South Downs National Park. Across the hills, dropping down to Cuckmere Haven, on over the road beside the chalk cliffs of the Seven Sisters – part of BBC Seven Man Made Wonders.
On to Birling Gap and a stop to look over the cliff edge and on sunny days a sparkling sea with a view that Mark says travels to the unknown. Then on past Belle Tout lighthouse, round by Beachy Head until we reach the spectacular views over the bay above Eastbourne.
Mark’s illness has been diagnosed very suddenly. He’s got aggressive small cell cancer, normally found in the lung, but in his case it’s in the bowel and liver.
We travelled to Seville in December, had a marvellous family Christmas in stormy Dungeness and booked to go to Hungary next week – February 26th – that’s how well he felt.
Now we have time to talk and sit quietly together and reflect on our busy fifty two years together. Family and friends have been a massive support and we are learning to be less occupied with the clatter and clutter of daily life.
So onwards and upwards on this next journey with dignity which will take all of our courage. We thank you all for the massive support and love,
Friday night in Seaford is the great fish and chip takeaway evening. Bugger healthy eating – carbohydrate and fat for us on the south coast. Old and young queue outside Trawlers or Osbornes in Church Street, Seaford and cars double park in the street.
I’ve learnt to beware of that little old lady who comes in with a piece of paper to remind her to buy a pensioner’s portion of cod and chips. I know now she’s from the local home for the elderly with a fish and chip choice from each of the residents, and Seaford chip shops fry fish to order. Her order takes ages – small skate wing, battered cod – no make that one grilled, haddock, rock … and mushy peas and sausages and curry sauce. For God’s sake! How many more people are you buying for! She loads the carefully wrapped, labelled packages into her shopping wheelie and heads off into the night.
Last Friday our grandson Charlie and our son Simon came to stay and chips were on the menu. ‘One portion is enough’ shouts Mark as they leave into the freezing dark. Much later Charlie pushes open the patio doors with glee.
‘We’ve bought 200 chips! Look!’ He has no idea how large a chip portion is for the residents of Seaford and they have ordered two – more like 400 chips between the four of us. But they were delicious and occupied a chip mountain on the dinner table, tossed in Cornish sea salt and Sarsons Malt vinegar.
After supper Charlie and Mark play hangman, only the new way of teaching reading makes the letter sounds slightly confusing for us!
Next morning 300 chips were taken down to the seagulls who keep watch for recycled food on the nearby cliffs. Woosh and the greasy, cold potatoes have gone. Next time I will teach Charlie to throw up chips so the seagulls can do contortionist acrobatics in the fight to get fed. That’s much more fun.
While I eat toast and home-made marmalade for breakfast, Mark has changed his morning food choice to an anti-cancer regime. A cup of chilled flaxseed oil is stirred into organic goat’s yogurt, then mixed with lecithin powder, and vitamin C from wild berries. Then a spoonful of bitter tasting herbs, some slippery elm and milk thistle powder. Next comes the hospital pills that sort out goodness knows what.
Lunch is more delicious – specially delivered DHL frozen chicken broth thanks to Polly and Annabel mixed with pea protein powder. This saves me loads of time boiling up bits of old birds.
Tomorrow the dietician from the hospital is paying us a visit – that should be a challenge!
Mark says for 26/2/2018
Whew! Puff. Lovely to end a day with my sister and brother in law, with my usual Manhattan, fine gravlax from Annabel, cottage pie, mango cream and Il Passo wine from Sardinia and Lanson champagne -.which he says is not special.