Author Archives: jennyridgwell

That was the week that was May 11th


That was the week that was May 11th

4th May was exchange day on our house in 22 Cliff Close and Simon and Ed moved our stuff into the Sea House (23) next door. Completion on May 21st – hooray one thing will be settled in all this mess.

The estate agent assured us that the buyers, who made the offer in January, were safe and keen and it would be done by the end of the day. But by 5 pm no news and our solicitor emailed theirs and said the agent must be a liar.

So Mark and I had packed up one house and moved into the airbnb one that already had enough furniture and stuff, but smaller wardrobes and a kitchen designed for a mouse to cook in.

Mark decided that his hundreds of spirit books would go to Amsterdam for training bartenders.

I decided that any books that could be bought back from Amazon for 1p should go to the charity shop. But gradually the garages in Seaford and Lewes fill up. And in my absence, Simon carts stuff to the dump before I could squeak.

Bank holiday Monday and my wonderful niece Mimi came with Daniel her American boyfriend and we sat on the Sea House balcony as the sun sparkled on the sea. Simon, Tamsin, Daisy and Charlie arrived. Such a hot day and they took the canoes out onto the sea and paddled round to Splash point. Constant eating and drinking as I found when taking the beer and wine bottles to the recycling bin next day.

Tuesday morning early, we hear that our buyers have dropped out. Four months of correspondence with our solicitor and some lame excuse about family matters. Despair does not cover it.

‘Bring it on’ I silently curse to the sky. What else could happen?

Well it did. My alcoholic younger brother Roger is reaching final stage of his addiction and his daughter Mimi has to watch in frustration while he pickles himself to death, all the time in denial that he needs help. I realise I have protected myself from the pain of someone ten years younger than me throwing his life away for his boxes of wine that he drinks for breakfast. And now his body is festering with sores but again I am protected from images arriving on my phone. I’ve sent a card and messages but he is too disconnected to care and will think I am nagging.

Mark decides that he wants to go away and I feel sick at the stress of travelling with him. ‘I know my body’ he shouts when I question how we will deal with his ailments.

‘Then did you know if you had cancer!’ is my sharp and unnecessary reply. I tell him I won’t go without travel insurance and he spends the morning ringing round the brokers listing his five cancers – bowel, lung, liver, lymph and bone. I feel his despair as each one refuses, then one offers £10,000 with limitations. ‘I’ll go without insurance’ he decides. My stomach churns at the thought of emergency medical helicopters bringing us home.

I set off to stay with my sister Isobel and my niece Polly with her delightful one year old daughter Velvet. And walk in the bluebell woods and spy a cluster of maroon wild orchids. Beautiful.

Home the next day, I agree to go to Cornwall after his May Fayre on May 20th. It’s the only plan I’ve put in the diary since February. Well, there were plans such as the trip to Uzbekistan but they have all been cancelled.

Friday 11th Mark gets a reply from his oncology nurse that he should not fly after chemo as there is a risk of infection and thrombosis. But we have non refundable tickets. And he’s prepared to take the risk. One of my friends, no name mentioned, says what have I got to lose if it goes badly wrong. And we laugh. She’s right. This journey is heading in one direction and we can speed or go the slow route.

Just listening to the inspiring Abi Morgan on Desert Island Discs ‘Enjoy the beauty of the moment’ she says. I must pay attention.

Went to see Barry, my counsellor. We chat like old friends but he leaves me with skills that I need to engage. Last week I tried to build a ring of steel around me to not get hurt by the daggers of cancer symptoms, so that I could lessen the pain of these times. But moving house raised rows and fears and the challenge of sorting stuff. It reminded me of watching Michael Landy’s Breakdown in 2001 where he destroyed all his stuff in an assembly line in the old V&A store in Oxford Street. I wish he would visit me and free me from my things, that I think are heirloom treasures, but they are not.

This week I need to learn to live for the moment more, engage in more courage by going away and confront angry shouting by walking away from it. Mark may be full of cancer but it is unkind to accuse me of selfishness at this time. I read a list to Barry of the week’s events and he says I am in need of respite care. The list is too serious and I am running on empty and will crack unless I look after myself.

Mark and I are used to spending time apart, and the cancer has thrown us together in a place, Seaford, that I have come to hate. So time away is going to be important.

Key words – courage, more of it, respite, enjoy, barriers, get out and about, laugh a bit.

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Walking to the end of life April 8th


I looked down from my favourite seat on the 93 bus from Putney to Wimbledon – front seat left hand side, with its big window view of the world where I can peak into the giant front gardens on Wimbledon Common. An old man walks slowly along the pavement below me, head down, wearing an overlarge black anorak, it’s hood cloaking his head like a monk’s habit. A man that does not want to be seen, lost in his own thoughts. My husband. As I journeyed on the bus to fetch our shopping I realised these past weeks had been spent walking beside a dying man. A man who was once strong and upstanding, argumentative and opinionated. A man that supported me in all things and got things done. And now it is my turn to remember the keys to the house and cars. My turn to make sure the car is full of petrol with a valid MOT. My turn to check that we have the chemo pills and remember to drive us to hospital appointments. My turn to take out the rubbish and buy the toilet paper.

We are never going on holiday together again, never to the theatre or an art gallery. Our travels from now on will be hospital and surgery visits, with short drives round the countryside for stops for cups of tea and toilet visits.

Now we are on our most courageous journey together towards his death. He does not want to travel there and I do not wish to take him, but cancer gives us no choice. Like the men on death row, the hostage taken by Isis, the tortured in Iranian prisons, we must face our future. Like those people there is usually one end – death. How hard for the wives, mothers, and children of those men to face losing their lives. I wonder at their pain, and I cry at my own.

Cancer is not a kind, fair way to end the life of a man that has always been kind and fair. What purpose is served in us suffering so?

My husband and I walk together to his death. He does not make this journey on his own.’Rage, rage against the dying of the light.’ said Dylan Thomas of his dying father. Can I write something better for my crying husband who says he is not afraid to die, but finds the process unbearable. Can I find a way to shelter his suffering, to morphine out his memory and help us to cope?

Our revels now are ended  .. We are the stuff that dreams are made of and our little life is rounded with a sleep.

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April 10th On Philip Carr Gomm’s retreat


April 10th On retreat

From Mark

At the weekend we had another break to civilisation, to Wimbledon, where all are busy with life rather than existing as they seem to do down here in Seaford.

Another evening in San Lorenzo with Jenny, Annabel and Simon who very kindly drove up specially with my chemo pills that I left behind but had a good dinner as reward.

Into 3rd chemo now and the low white blood cell period so need to take care. No more out of date or carelessly reheated food for me. But bowel movements are easier so hoping a CT scan soon will show some reductions in the growths.

From Jenny

Today I’m leaving Mark for the first time since his diagnosis on February 8th – 9 weeks after I was given the prognosis of ‘weeks to live’. Annabel and I are going on a retreat for 2 days with Philip Carr Gomm in Sussex. The course description says

‘The long British winter tends to diminish our reserves, but by April, longer and warmer days are starting to arrive. Here is your chance to take some time out to welcome the Spring and recharge your body and refresh your soul.’

I’ve never done a retreat before but in the early days of Mark’s illness, Philip visited us and gave us a calmer, wiser perspective on life and death and our place in the world long after we have gone. It made a refreshing change from the clatter of complicated medicine names and chemo procedures. And after the greyest, wettest, windiest winter I can remember, I’m hopefully driving away from the rain clouds into a sunnier climate, fifty miles away.

So it’s Yoga Nidra, conversations on spiritual life and exercises from sophrology and Druidry for me and visualisations to calm the mind. Mark had promised that he will keep well as he enters the seventh day after chemo when he becomes more vulnerable to infections due to low blood cell count. His wonderful sister Carole is replacing me and feeding him organic vegetables from her allotment.

A headline in The Times today says ‘Sudden weight loss a cancer indicator in the over sixties’.In January Mark lost the weight suggested by the doctor in his health check and I puzzled how he had done it. At the time he said he had cut down on the number of daily meals he was eating, but now we know the real reason.

Some of you may wonder what’s going on in exciting Seaford.

The beginning of April has seen busy times on Seaford beach. By 3rd April the huge shingle moving trucks have driven away leaving the stones to go back to play and crash about in the constant winds, waves and storms.

On April 2nd, groups of twitchers, birdwatchers or birders arrived. I Googled ‘What’s the difference between a birder and a twitcher?’ Answer – A birder or birdwatcher likes being outdoors and to watch all birds but twitchers prefer to track rare birds and add them to their lists.’

I don’t know whether Splash Point has birders or twitchers who arrive at dawn and sit under umbrellas holding large telescopes and scan the horizon for hours. As a group they are intent on writing tiny pencilled notes on sodden paper notepads and not keen to talk to me.

So what birds do they see?  I point out that the great yellow thing in front of their telescopes on the horizon is the Dieppe to Newhaven ferry but the pompoms on their hats sink lower as their heads drop onto their notepads and they hope I’ll go away.

Can you see the ferry?

My rain spotted glasses mean I can’t see anything but it seems there are plenty of Brent geese, Common Scoters, Red Throated Divers and Sandwich terns flying past. The birds need a wind from the south east which blows them up to the Arctic for their breeding season. I’ve found a blog by Matt Eade who keeps a tally of all the birds he sees each day so maybe I can make a new chum – as long as I don’t speak during birdwatching hours!

Can you see the ferry now?

 

Another group of visitors arrive along the Seaford seafront as busloads of students pile out onto the windy coast and shudder in the storms. Clutching clipboards and huddling together they are poorly dressed for their cliff climb and the horizontal rain which gets under the tightest tied hoodie. Sometimes poorly prepared teachers take their groups up the cliffs and let them perch on the chalk cliff edge, presumably unaware of the massive cliff falls during the autumn of 2017.

‘Where have you come from?’ I occasionally ask. ‘Oh very far away.’ ‘Where’s that then?’ ‘London’ is the usual reply.

It seems this Geography GCSE day trip is to investigate ‘How coastal processes create distinctive landscapes and the role of human interactions in altering this.’ They look at how to prevent Seaford from flooding and the impact of erosion of  the chalk cliffs. Our address will be Cliff Closer soon instead of Cliff Close.

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April 5th NHS help – don’t bother just live in La La land


From Mark

On April 2nd my sister Janet and husband Bryan arrived bearing a truly magnificent turkey pie. Enjoy it I did but bowel cancer is just that so this lover of fine food does now have a downside – multiple loo visits during night.

Same in hospital. Went.for 3rd.chemo yesterday. Blood test better so OK to proceed. Everyone else brings bags of food for their 3 hour session. One had a home made Madeira for his 10 hour blood transfusion. But I risk eating nothing rather than have to drag my pillar of poisons to the loo and back.

Janet made the receptionist’s day when she asked for help on crossword. He got Yakitori and was chuffed to know he’d done the Times crossword albeit the ‘easy’ one.

Third chemo went ahead and this time it’s the full dose meaning 6 more chemo tablets, size of pessaries but taken orally today and 6 more tomorrow.

From Jenny

Many thanks to Janet and Bryan for coming to stay and help share time with Mark. And thank you for taking him to the hospital for chemo – a task that I dread. The time on my own meant I could create a new, softer bed, without him telling me the old one was fine and get essential work done.

In the fifty two years that we have been together, Mark has always been so strong in body and will and busy with new schemes and help for others. When we moved to Lewes he immediately joined Southover Bonfire. As a Down from Londoner, he knew he had little time to prove his worth as a bonfire boy so set up the annual May Fayre which this year, its tenth is held on May 20th in Lewes Priory. Many other local initiatives were supported and in Seaford he gave his rum and gin tastings to raise funds for the Sailing Club as well as taking the safety boat out to sea during racing days.

Now his cancer has exhausted and debilitated his energies – as a friend said ‘Cancer is very selfish’

This is the poem that comes into my head this week – Dylan Thomas written for his father
‘Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.’ Written for his dying father.

Becoming a carer

Last week in the middle of the night I joined the Macmillan Cancer Support Online Community. Eight weeks after diagnosis I identify as the carer and here is a Carer group for me on the site. What a wealth of stories and help is found on the website but I wonder if it was voyeuristic to read the postings. It is a private space where people share the raw issues of their lives and it has given me confidence to know that many postings echo my inner thoughts. There are so many posts, so many carers dealing with challenging health issues, and maybe finding support from a chat room. And so many like me that find the health system is broken and in the end the carer is left alone to cope.

How not to get grumpy when people say. ‘You need to think positively.’

What does that mean? Give me some clues when the oncologist’s letter says ‘palliative, terminal’ with big, medical cancer words for what lies ahead.

Some posts write about the helplessness of dealing with pain. And the frustration that medical services are closed at weekends. The four days of Easter have been especially long for me. Chat room responses show the expertise that carers have learnt. Drug treatment with opiates needs laxatives to take with them to help constipation – this is a serious issue for Mark with his blocked bowel.  But pain relief must be carefully managed – so it’s down to me again to find help. Google has become my doctor.

They unburden the stress and frustration when the patient gets sent home quickly after treatment to a bewildered and unprepared carer.

How the carer must look after themselves as they are the one left standing.

As the airline says – Put your oxygen mask on first before helping someone else.

Carers need to keep an hour or so a day for themselves to have a nap, read a book, go for a walk, play on the computer – so thankyou to all who have stayed and visited and given support.

And carers will get by because we have to.

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March 31st Securicare Putting you first card


31/3/2018

Securicare Putting you first card

From Mark

Now I have a blue badge to park on double and single yellow lines so watch out as I’ll be in your way – although parking wardens fine you for any mistakes.

But I also have a Securicare Putting yourself first card which says ‘ I have a medical condition and anyone I present this card to must allow me immediate use of their toilet/’

I asked Annabel what she would do if I turned up on her doorstep in Tooting and presented her with this. ‘I’ve never heard of this and I don’t know what I’d do in London – there’s no picture on you. If you live on your own it’s a hard one/

Mark says ‘I’d be peeing on your doorstep while you check out the card on the internet.

Jenny says

The challenges of cancer move on apace and now we have to deal with toilet help.  I never imagined a disease would confront our dignity so furiously. It makes leaving the house to have a change of scene such a provocation and trial. The Securicare card may never be used. I can’t envisage turning up at any of your doorsteps to beg for Mark to be let in to use the loo.

As a child on our family holidays we roamed Britain in our rented dormobile for two weeks and went wherever the weather forecast was fine. My wonderful grandmother came with us, but she had a phobia of thunderstorms. My job as an eight year old was to knock on doors when the thunder and lightning were at their height and ask if my grandmother could sit under their stairs until the storm subsided. That now seems no different to me offering the Securicare card at doors today. If anyone else had a relative with these special needs, let me know.

My reward for this trauma was to stay in a bed and breakfast for the night with her – I also had to go in and check out the room. One night we stayed in Whitby and I remember sitting at the breakfast table overlooking the sea which had a large decorated blue china pot in pride of place. The owner said it was Captain Cook’s apprenticeship award. Can that be true?

 

So here is another idea for you inventive foodies. What would be your final meal? I’ve collated your final hour and many of you were eating – you can find the details on this link.

Mark’s final meal

Ceviche of tuna and other fish

Bavette steak with mushrooms, tomatoes, allumette potatoes and bearnaise sauce

Chimichurri sauce made by the Rose and Crown Fletching

Vanilla Angel Delight

Annabel

Sashimi

Katsu Curry and rice

Pavlova and summer fruit

Jenny

Modern version of prawn cocktail with kindly caught prawns

Skate wing – cooked by me in Normandy hand churned butter

Mashed potato and spinach, cream and rosemary as cooked in Simpson’s in the Strand

My grandmother’s bread and butter pudding made with white bread and sultanas.

 

So let us know your meals!

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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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1 hour left to live – ideas from the group


People in the group were asked the question – What would you do if you had 1 hour to live – here are there replies – many about sea, music, and food!

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.

Laurence Floyd, one of Mark’s very best friends ‘One hour eh? how about 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.
Jennie
My last hour would have to be surrounded by all my loved family and friends and to be somewhere with jaw dropping awesome scenery – the stunning top of Ben Nevis watching a golden eagle.  And of course food would have to be included.  I love all food that is bad for me –  pastry and cream and chocolate but also adore seafood.  My choice would be a cold seafood salad with yummy good mayo followed by chocolate gateaux and salted caramel ice cream accompanied by a Brown Bros Orange Muscat. Delicious.
Pat
Hopefully, in the warm sun with family,  friends and cats around.
Lots of delicious appertisers, drinking a delicate rose from the Luberon and listening to  any Pablo Casals, John Lennons ‘Imagine’ and finally Vaughn Williams ‘The Lark Ascending’
Eileen
 I THINK that I would just walk in the most beautiful peaceful part of the countryside  listening to the most beautiful LIGHT CLASSICAL MUSIC…JUST DRIFT AWAY……..
I might even take paints with me  .. one last image..
Alex wrote this for me:
Some people come into our lives and stay with us forever.
Some people move our souls to dance, they awaken in us a new understanding with the passing whisper of their wisdom.
Some people make the sky more beautiful to gaze upon . They stay in our lives for a while, leave footprints on our heart and we are never ever the same.
My literary friend Lesley
It would be lovely to be sitting at a table on a peaceful beach in Greece. I don’t need any music, just the plash plash of gentle waves on the beach, the buzzing of cicadas, a few birds in the olive trees and some Greek voices chattering. Very fresh grilled fish, a bottle of cold retsina. My family could be swimming, sitting, idly chattering but being quiet, contented and peaceful. If I can’t have a Greek beach I’ll have an England flower meadow in June, wild orchids, clover, buttercups and a long view of hills and valleys, plus a bottle of champagne, a delicious picnic and a few favourite people lying with me in the long grass and watching the summer clouds drift across a blue sky. Ooh I almost wish I were there! Xxx
Sue Johne
I would go and sit on a beach and look at the sea……venue does not matter and I might not have time to go far! Meditation time to reflect on lovely experiences I have had and the love and support from friends and family and hopefully given too…if not last minute virtual hugs to some! Peace would be important and some songs from Dusty Springfield whose voice and songs I loved before she died from breast cancer!
Axel Johne
I’d walk around our house in the Welsh countryside and admire all the work that people have done to the house over so many years – centurys.
 From my lovely niece Jo
I spent a disproportionate amount of time thinking what I would do with my final 60 minutes – including whether or not thinking about it was cutting into my time. I also thought is it one hour from now? Can I choose when it starts? Can I hypothetically come back to the uk for it? Yes, far too much time and anxiety which I also found amusing.
I agree with the peacefulness of the sea and in my last hour I don’t need to work up a sweat dancing like Hermione, I’ll leave that to the pro. I am more on your wavelength.
I eventually made a decision!! Ok I narrowed it down.
I would be with Jonas eating our beloved oysters, he will be having a pint and I will be drinking champagne. I thought about sitting in the Lobster Shack in Whitstable but decided to go to Jonas’s favourite pub at Dell Quay. The skies will be blue and the sun strong. The yachts’ cables will be slapping against their masts and the whiff of the seaweed and the sludge will bring back past memories. Then you, family and friends will slowly join us and we will have gathered as if it was Christmas Day.

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