It's No Good Crying Either

31st July 2012 Tuesday

I discover I can make polite conversation over the dinner table while entertaining two nagging companions in my head - Mr Waiting and Mrs Worrying. I’m waiting for a phone call from our CAB advisor to go over the draft letter for the Tribunal.  And worrying I won't get it right. She said she’d call at lunchtime.

It’s luchtime an we are in a little village outside Marlborough. We are sitting in a big farmhouse kitchen with some lovely people whose house  - and dog and chickens and greenhouse and swimming pool - we are going to look after while they are away at the end of August. We have come to learn the ropes. I’m listening and eating lasagne but I’m tight as a fist  - my eyes keep flipping to my mobile. Maybe there’s no reception here.

I get through the lunch and the ropes and then later an elegant tea of drop scones and sponge cake with my husband’s uncle and aunty while my ears are stretched anntenae waiting for the phone to ring in my handbag.

At 5.30 on the way home in the car the call comes in under the strains of Handel’s Messiah on the CD player. Instead of reading the letter over the phone she will come to the house tomorrow - a huge relief. But she can’t represent us on the day. I feel about five years old and my mummy has left me at the dentist on my own.

It’s no good crying though. It just makes my head pound and my eyelids puffy. Waiting over, worrying intact.

It was my mother’s birthday today. She would have been 92.

It's No Good Being Cross

30th July 2012

It’s no good being cross when my husband does things that drive me mad.

Like buying the wrong Felix cat food which I know the pussy cat won’t eat.

Like drinking wine on a Monday when he said he wouldn’t.

Like offering his glass to me again and again when I’ve said no. 

Like putting the wet smelly black bin bags down on the mat so I have to scrub it.

Like asking the question What am I here for? and never expecting an answer.

Like giving up on himself when I know he’s still bright and creative and capable.

It doesn’t work to be cross because he already feels so bad about himself it’s like pouring acid into his wounded heart. It just hurts both of us.

This evening we wait for two hours for our lovely CAB advisor to arrive with the letter she’s written for the Tribunal next week so we can send it off in time. When she doesn’t come or answer her phone I worry something has happened.

We give up and have last night’s supper re-heated with pak choi and courgettes and watch  two programmes back to back about the government’s attempts to get people off benefits and back to work by using independent medical assessors. The system has gone mad. People with severe physical and mental conditions are considered fit for work, appeal against it and win and then are re-assessed a few months later as still fit for work.

My husband would like to work. It seems they don’t want to know what you can’t do but only what you can. And he can do lots of things. Except  gain access all the words in his head which connect him to the world and give his life brightness.......

Jam and the Dam

29th July 2012 

Saturday

I pack a picnic and we drive north into the folded green hills of Somerset. We walk round the perimeter of an odd shaped lake -  a dam which was once a deep valley. I think about the flooded trees under the water and remember another dam - Kariba  - on the borders of Zambia and Zimbabwe. A whole tribe of people had to be moved to drown that valley - the cost of hydro-electric power for two countries. My husband asks me what hydro-electric means.

We eat our picnic under white scudding clouds - smoked salmon bagels with strawberry jam and chillis for my husband and egg mayonnaise Ryvitas for me and a big box of salad. I worry about the strawberry jam  - does this mean my husband is losing it around food combinations? Somehow chilli jam works with salmon but  strawberry doesn’t even if it’s mixed with chilli. Maybe I’m just being a food fascist - my father used to eat sugar on lettuce.

Sunday

Today we walk on the windy cliffs above Charmouth -  the voices of holiday makers on the beach below us blown out to sea. The coast path is closed because of the recent land slides. So we take the high inland route but the ground is fissured with deep cracks and dry ruts. It feels precarious under my feet - this ancient terrain shifting and uncertain now.

Like my inner landscape - crumbling at the edges.

At least the pussy cat is eating and sleeping as if all is right with the world. Maybe the tumours inside him are dissolving. Or maybe all the love and prayers he’s receiving are healing him. And releasing me to accompany him on his  chosen path without falling into the deep shadows of guilt and grief  - my own drowned valley.

Melted Into Thin Air

26th July 2012 Thursday

Prospero:
Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.

The Tempest Act 4, scene 1, 148–158

On Tuesday night we sat in the Swan Theatre in Stratford and watched The Tempest. At the interval my husband said he might as well go back to the hotel as he couldn’t understand any of it. I asked him to stay. I was struggling to grasp some of the language too. When I first met my husband he would have been able to quote this speech verbatim. I used to lie on his bed in the horrible council flat where he lived and listen to him learning his lines for whatever Shakespeare play he was practising.

That part of his life is over now, dissolved  - melted into thin air.

This evening while the air is sticky as treacle we walk through deep shady woods and I’m sure I can smell the powdery blossom of the mimosa tree. My husband says he feels lost and  doesn’t know why he’s so tired.

I make Ratatouille for supper which we have with green beans and broccoli, sprinkled with walnuts and grated Gruyere cheese.  Someone told me the secret of a good Ratatouille is to fry the aubergines and peppers and courgettes separately before cooking them in the rich tomato sauce. Propbably too much oil but it stops it being a watery stew and turns it into a Mediterranean delight.  Especially with a handful of chopped fresh marjoram stirred in at the end.

We  eat in front of the TV watching the Proms - Daniel Barenboim conducting  Beethoven’s 5th Symphony. My husband knows it by heart - the language  of music he hasn’t lost.

Free In The Midst Of Suffering

23rd July 2012 Monday

Summer drifted in today on a clean blue sky while I sat with five gorgeous women, on a long bench in a cafe garden scented with mint and marjoram.

Later I arranged for the vet to come and put the pussy cat to sleep on Thursday afternoon.

Luckily I changed my mind and cancelled the appointment. I couldn’t have gone through with it anyway. My sister-in-law in Fiji emailed me. She knows from a deep and compassionate place about how animals die and their wisdom in their own passing which isn’t in our hands - unless they are in real distress. And how it is possible for us to be free or peaceful in the midst of ‘apparent’ suffering...

Which is what the pussy cat is trying to teach me in his wise, courageous way. If only I would trust and listen.....

Love Remains

20th July  2012 Friday

The pussy cat lets the vet feel his stomach, stick a needle in his neck and shoot a tablet down his throat without a squeak. I didn’t want this for him but I couldn’t bear the other option yet. Feels like we are buying him a bit of time  - its palliative now  - mild chemo to help him feel better - maybe kill some cells. We can only see if it makes any difference even for a little while. And if not decide otherwise. But not tonight.

Already he has perked up and has eaten small amounts of horrible Felix cat food, tuna, roast beef and parmesan cheese He sits next to me on the kitchen floor in radiant sunlight while I  roll out pastry, chop rhubarb, mix up flapjack, and boil beetroot.

I’m trusting now that he’ll let us know when it’s the right time. And maybe all decisions are right. Right to treat him and also right to let him go.....whatever happens the love remains.

Feeling Sad

19th July 2012 

I don’t know why I thought the pussy cat would somehow just get better. According to all the cat lymphoma websites he’s now showing signs of getting worse. No appetite, he’s only eating lickfuls, he looks so thin, withdrawing and sleeping all the time, diarrhea and lethargy.  All the alternative nutrition treatments I ordered from the States haven’t arrived yet.

Our pussy cat healer is sick  herself - she suggested I ask for help for him.  And I’ll talk to the vet tomorrow. I feel at a loss to know what to do for the best.  They say on the websites that your cat will tell you when it’s time..... 

I’ve just been talking to him curled up on the sofa downstairs. He purred a bit and wouldn't look at me.  I just feel really sad now.

Dam!

18th July 2012 Wednesday

I don’t know what to write tonight......

A good moment - when our lovely clinical psychologist tells my husband the truth about how he sees him - about how he’s a bright, sensitive, creative, courageous man dealing with a life changing disability.

A not so good moment - when my husband doesn’t believe him.

Maybe if I started to accept him just exactly the way he is,  then he would too. 

Dam....do I have to do EVERYTHING around here?

Thorn Bushes

17th July 2012 Tuesday

I had a dream last night. I pulled my husband out of a deep thicket of thorn bushes - long white thorns on every branch. But he wasn’t hurt, he came out easily and I had a sense he was right about something before he fell into the thicket.

 Today my dear sister hoicked me out of my thorn bush to-do list. The one that keeps pricking me but I don’t do anything about it. Gently, gently she helped me clear some space so that by the time she walked out of the door we had arranged for a cleaning company to come and quote to deep clean our shabby dusty house, for a window cleaner to clean the upstairs windows which haven’t been done since my niece got married in 2008 and for a man to come and give the house a free health check - especially the new damp patch in the cupboard under the eaves.

Then she  booked us a two week holiday in south west France in October in a beautiful house with a swimming pool and views of the surrounding countryside.

And it didn’t hurt at all - no scratches in sight.  I'm still wondering what it was my husband was right about though in my dream.

Breakfast Lunch and Supper

16th July 2012 Monday

Breakfast on the run - mashed banana and toasted sesame seeds.

Coffee in Costa with sympathetic Devon Carer - facing huge troubles of her own - she advises to live for today - spend the money now - enjoy husband while you can.

Lunch with husband - left over curried veggies and cashew nuts. He leaves half his plate. The pussy cat sits on the lawn and chews at long wet grasses.

Type up letter asking for medical evidence from  Professor Neurologist describing life with husband with dying vocab. Husband looks sad but agrees when I read it to him.

Coffee in delicious posh hotel with dear friend after she opens up her wardrobe to me and offers me style advice and her beautiful pashmina and pearls to go with my outfit for nephew’s wedding.

Tea with husband at kitchen table while I correct my spelling mistakes in letter to Professor Neurologist.

Professor Neurologist offers anti- depressants to sad husband but we decide they aren’t necessary as depression isn’t prevalent condition - once I explain to husband what prevalent is. PN agrees to write letter for tribunal - nice man.

Spend lots of money on not very much but very high quality stuff at Waitrose. If that shop was an icecream it would be a knickerblockerglory.

Supper on my own - garlic prawns, soy noodles, ginger pak choi and courgettes - watching Jamie and his festival picnic food  - none of which I’ll ever cook but love his enthusiasm - while husband sings in his choir.

Write blog wondering what happened to me in my day and if I’ll ever find time to read poetry again. Or learn to write it.

Croissants or Courgettes

15th July 2012 Sunday

I squash up tiny pieces of greasy raw salmon fillet and the pussy cat licks them off my fingers. Everyone says raw is better than cooked for pussy cats but up till now he’s rejected it. I allow myself a glimmer of hope, a smidgen of relief. I drip drops of flower rememdies on his paws - no other way to get them in him.

‘This croissant is a bit doughy,’ I say to my husband at breakfast.

‘Doughy?’

I explain about the texture of  bread dough.

We had this exact same conversation last time we ate croissants - or courgettes as my husband calls them.

But later we go through pages and pages of the report about our finances and he explains to me in great detail the difference between an ISA and an OEIK. And I know he knows what it all means. It’s been a year this month since he stopped working.

The first few blackcurrants from the allotment. Their juices leak out in the pan - the colour of a deep claret wine. I scrape and push them through a sieve and make a thick puree to swirl through a velvety creamy parfait turning to ice cream in the freezer.

This morning I put the heating on to get the sheets dry. This afternoon we sit on the pebbles at Weston beach with two dear friends and their spotty chestnut brown pointer dog and feel the sun burning our cheeks. Too late to put the washing on the line though.


That's just what this summer is like - unpredictable. The sooner I get used to it the better. Like eating courgettes for breakfast.

The Lost Summer

13th July 2012 Friday

The trouble with rice dishes like Risotto is that you can’t stop eating them - at least I can’t  - I seem to always find room for one more sticky spoonful. Which is why I don’t cook rice very often.  But tonight I wanted deep warm comfort, so I made a fishy risotto with long, tubular, green onion tops, chopped courgettes, pink stemmed ruby chard, garlic and parsley and  translucent chunks of smoked haddock. Very pastoral and moreish and perfect for this lost summer evening.

 And enough for the pussy cat too - the fishy bit anyway.

I’ve been away all day - dodging in and out of the rain. An unsuccessful shopping expediton in Honiton - still looking for shoes and a long floaty cardigan to wear at my nephew’s wedding;  driving  down winding muddy lanes, lined with frothy cow parsley for a cup of tea with my sister at her beautiful farm; sweet potato tortilla lunch in a veggie cafe in Illminster with a dear friend who I haven’t seen for ages; then home and pottering in the garden -  dead heading roses which never opened, trying to get the pussy cat to eat; putting away allotment produce when my husband comes back laden with broad beans and spinach, blackcurrants and damp garlic bulbs.

And all day I’ve been wondering how I can untangle myself from this net of sickenss which I have created around me - my husband, the pussy cat, my anxiety - and as Anita Moorjani talks about in her book “Dying To Be Me” find a way to be myself -  fearlessly..

Have You Got Your Unicorn?

12th July 2012 Thursday

The pussy cat wakes me at 5am wanting a drink. From the dripping bath tap. Then he curls up by my hip - a small soft comma in the folds of the duvet.

I slip out to take the letter to the vet’s and hand it to the receptionist as she opens up the practice. Not sure why I feel so guilty.

Strawberries for breakfast from the allotment - ice cold and not very sweet. A glass of  sweetpeas on the table - pale paper pastels. Like having my mother here - we had bunches of them at her funeral. She died four years and two days ago. Rain spatters on the windows and soaks into the pots on the patio which have been decimated by the snails. Only a few begonias and slug bitten geraniums left standing.

As I leave the house to go to the farmers’ market my husbnd says,

Is it raining?

Yes.

Have you got your unicorn?

Do you mean my umbrella?

Yes - what’s a unicorn then?

I tell him and we laugh.

Later I meet up with a dear friend for coffee. My heart goes out to her. Her husband has the same condition as mine only he’s had it for much longer. She tells me about the good days and the bad days. I try and imagine ten years ahead - maybe like her I’ll be thinking about care homes then.

But not today. Today we go the hospital together for his chest X-ray. He calls it a lung thing.Today we cook supper together. And play a game of scrabble afterwards. He wins and it doesn’t matter neither of us knows the word LOUND. He found it in the dictionary so it counts. 

Like love counts..... and remembering to laugh.

Is It The Right Thing?

11th July 2012 Wednesday

Another Angelic Sherpa -  this time from Age UK Carer Support Team -  sits on the sofa with me for two hours. We pour over the tribunal papers and together compose a letter to my husband’s neurologist and clinical psychologist requesting more medical evidence about semantic dementia but based on what it's really like living with him - not just for an hour in their offices.

I feel hammocked in her wonderful practical generosity. I give her a bottle of my pink elderflower cordial to take home but it doesn’t reflect my true gratitude.

This afternoon the pussy cat sits peacefully on the lap of our lovely animal healer while she works her magic on him. I think about him at the vet’s tomorrow under sedation, a drip in his leg, the chemotherapy pulsing into his little thin body - and I know I can’t bear it for him any more. Our healer says he’s struggling and he doesn’t want it any more either.

At home he eats some big white flakes of our fish and chips take away supper. I write a letter to the vet and say we want to stop his treatment. It’s shredding me though - how can I know it’s the right thing? My heart says it is but what if it means it prolongs his suffering......

Angelic Sherpas

10th July 2012 Tuesday

I’m noticing how worrying and fretting have become a full time job - gnawing away at my time and energy making me snappish and waspish, distracted, withdrawn and slow motioned.  I notice this because today I find myself taking a little holiday from worrying. This is due to an appointment with a lovely woman from the Citizen’s Advice Bureau. My friend calls these people Angelic Sherpas - which is exactly what they are.

We sit in her friendly office at the Force Cancer Support Cente at the hospital. We are trying to find things my husband does that may qualify him to claim that he does not have limited capacity for work - which is what the tribunal is about. For example : Can he convey a simple message about the presence of a hazard? He doesn’t know the word hazard but he could tell someone to move out of the way of a lorry backing down a road. He stumbles on the word initiate when he’s reading a sentence out loud but knows what it means if he hears it. Or I explain it to him.

We leave the hospital and drive to the garage to get my car fixed. But the part our man has ordered isn’t the right one. The fault could be one of three different wires and he’s not sure how to find out which one. He says he needs to do more research. Which is how I feel now. We need to find out how to wire up the evidence for this tribunal. But at least now I feel we have a little break in the clouds.

And an appointment in two weeks time with another Angelic Sherpa who can sling a rope between us on the next step up this sheer mountain face which towers so darkly in my mind.....

Rising Tide

9th July 2012 Monday

I was going to cook the artichokes for lunch but when it came it I couldn’t eat anything what with my mouth still full of novacaine from two fillings -  my jaw and lower lip numb and aching. It didn’t wear off till  supper time but crept up into my head instead and left me wobbly and tearful. At least that’s what I’m putting it down to - not this rising tide of anxiety that keeps swimming up to choke me.

A yelllow warning light flashes on the dashboard when I’m driving home through spitting rain. The lovely man at the garage says it’s to do with an electrical wire and the exhaust. He thinks he fixes it with an expensive looking gadget. But the light comes back on as soon as I turn into our road.  I ring him and he’ll order a part. So comforting to have someone looking after my car.

I can’t face my to do list so I peel potatoes and chop swiss chard, dice red onions and fresh ginger and cook up a coconut curry sauce for fat haddock fillets which I bake in the oven. I’m hoping  to tempt the pussy cat with the fish.  He’ll only eat out of my hand at the moment - and only tiny teasponfuls at a time.

It such a relief when he  does eat a bit of the haddock so I put one of the fillets aside for him for tomorrow too. Maybe it’ll bring his appetite back. I’m hoping mine will return too when all this tribunal stuff is over and the flood waters in my chest start to subside......

Losing and Waiting and Coughing

8th July 2012 Sunday

The sun is warm on our backs as we walk in pine woods - as if all yesterday’s rain never fell out of th sky and swamped the fields and drowned the streets of Ottery St Mary.....

Andy Murray doesn’t win but I change my mind about him after he shows us his heart in his tears on the court ......

The pussy cat eats a little and drinks a little but he’s all  knobbly bone under his fur....under my stroking hand as he lies between us on the sofa.......

A sense of waiting hangs around in my cells......waiting for something to happen.....not sure what ......maybe something bad.....so that I feel paralysed to do my ordinary life.....like clean the bathroom, tie up rampant honeysuckle wands in the garden, put away my clothes, answer my emails......

Now I’m listening to my husband coughing and hawking downstairs.....a constant backdrop sound where ever I am in the house   - like a window come loose from its hinges, banging in the night.......

Massive Doses of Love

7th July 2012 Saturday

7am I put the finishing touches to the birthday cake for my sister-in-law.

7.30 We watch Breakfast TV news and weather report - rain and flood warnings in East Devon, Somerset and Dorset. We need to drive through these counties to London and the birthday party. Should we go or not? Maybe the fooding is local and not on the main roads. I’m torn - also reluctant to leave the pussy cat for 12 hours since his chemo two days ago.

In the end we stay home. I freeze the cake. My husband goes out in the rain and buys Waitrose croissants and the newspapers. It feels like a gift of a day. Except I’m restless and keep thinking we made the wrong decision. Even while I take root in the sofa and watch Serena  Williams win the women’s singles final.

The pussy cat won’t eat or drink. There are four different kinds of cat food in containers in the fridge and yogurt and tuna. All day I try and tempt him with the things he likes. He sniffs the bowl and turns his head away. There must be some deep instinctual thing about feeding someone you love. I feel such despair and hopelessness and an irrational rage too when he refuses nourishment. The chemo has taken his appetite away so why would he eat. I could just trust he knows what he’s doing. But I’m not sure I do.

I suppose I’m afraid he’ll die if he doesn’t. And it’s somehow my job to keep him alive. If only it was massive doses of love and not drugs that could heal him. Then he’d go on forever.

I’m trying to remember that You are always in the right place at the right time. And that today worked out perfectly.  For me and the pussy cat and the birthday girl without her cake.

Not Getting Up In The Night

5th July 2012 Thursday

On TV last night was a programme called When I Get Older. I watch an exhausted woman who has the same name as me caring for her husband who has had a stroke. He used to be an athlete. She says sometimes she goes to the bottom of the garden and screams. He says he does too but not in the garden because he’s always in bed.She says she has stopped seeing him as a person just someone with bodily needs. 

When she realises it and she says sorry and kisses him he says he feels twenty years younger. It makes me cry.

Today these are the words my husband doesn’t know until I explain them.....

fan

cabinet

slug

arena

Bollinger

Tonight I’m feeling so grateful that all I have to face are the pinpricks of a dying vocabulary. And not getting up three times a night to give my husband a pee bottle. For years and years.

Grumpy

4th July 2012 Wednesday

Not sure why I end up being so cross and grumpy tonight. The pussy cat is fed up with me - I tried to make him eat his horrible bitter tablet crushed up in butter but he wouldn’t. Even though it worked yesterday. He’s eating very little and sleeping all the time. I’m dreading taking him back to the vet tomorrow for more chemo under sedation.

I try to watch the men’s quarter finals and make a tricky vegan chocolate cake at the same time. Texture a bit gritty with roasted hazelnuts but the frosting looks like real chocolate icing  even though it’s just coconut oil, argave syrup, cocoa powder and orange zest.

When I come to wrap up the lemon polenta cake I made this morning - the non vegan birthday cake - I find it’s totally raw in the middle. I don’t know how long it takes to re-bake a cold cake. I leave it in the oven too long and now it’s over cooked and dry.

This evening the sun pours into the kitchen. My husband comes home with a bag of pale wet and dirty strawberries, a bag of broad beans and three huge artichokes. I’m grateful for them and I don’t want to deal with them. I don’t want to cook supper. I shout at my husband when he offers me a glass of wine. We have an agreement not to drink in the week.

I think I’m just fed up with me and I’m taking it out on him. And I want my cakes to taste wonderful but I don’t think they will. It’s probably not good to have this tantrum in writing....

A Cake With Compassion

3rd July 2012 Tuesday

My husband’s office smells of new cut wood and sawdust. He’s happy with the six floor to ceiling shelves which our lovely carpenter has been building all day. When he’s gone home with all his tools, we sit down together to write a letter to the Tribunals office. We argue about using the word postponement. My husband says it makes him look like he’s got a big vocabulary and he’d rather use the word change. We don’t say our doctor has been on sabbatical - just that she has been away. I realise how much I miss mining the rich coal seam of nuance and distinction that runs deep in our language.....how I need to pare it down to its core when I talk with my husband. 

Later I sit with my sister in the kitchen and we talk the fine detail of vegan chocolate cake recipes - I’m making a birthday cake for a dear friend’s fifthieth - we discuss what to substitute in place of eggs - ground up flax seeds, in the place of butter - coconut oil or avocado, in the place of sugar - agave syrup, in the place of wheat flour - rice and quinoa flour.  This evening I experiment and adapt and bake a recipe for chocolate vegan cup cakes from the wonderful raw and vegan website A Dash of Compassion  which you can find at  www.adashofcompassion.com

When it comes out of the oven the cake looks dark and dense and smells chocolatey. When I cut a slice the texture is surprisingly crumb like but it has a slightly gooey sticking-to-the-roof-of-your-mouth feel to it. It tastes like a distant cousin of a chocolate sponge and what it needs is a rich ganache icing and lashings of cream.

But I’m not going to give up. I’m determined to mine the depths of the ultimate vegan chocolate cake for my friend’s birthday. And accept it can still be delicious but not the same as the original. A bit like my husband who is not the same  - just a different version of himself - without  big vocabulary. 

And I could see that as the icing on the cake.

A Slow Smile

2nd July 2012 Monday

 3.45 pm - we are waiting for the call from the Citizen’s Advice Bureau with the sound turned down on  the TV - watching Andy Murray and Cilic slogging it out under dark grey skies over Wimbledon. I have a list of questions to ask -  questions which have been swirling in my head for days. I’ve been feeling jittery ever since I woke up -  which is mad really as this call is about helping us - these people are on our side.  Maybe I’m afraid what we’ll find out.

I jump when the phone rings and turn it on to loud speaker so we can both hear. He’s such a lovely man with a beautiful voice -  he listens and finds out the answers and calls us back. I want to leap down the phone and hug him. He advises us to try and postpone the tribunal to get more medical evidence. He dilutes my fear that I have done something bad.

When I turn the sound back up on the TV my world feels different. As if the clouds have dropped their rain and I can see a clean light approaching  - spreading like a slow smile on the horizon.