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Archive for May, 2012

Ok, I’m out of it now.  The feeling of doom has lifted after eight days.  I am so grateful I feel like joining a gospel choir.

Wrote some bits the other day.  Did not post as I did not want to scare my bladdicts.  And people are so kind:  if you post something a bit tragic, they all turn up with donuts and eclairs (Lesley), flowers (Jim), lemon drizzle cake (Karen), biccies (Vicky), messages galore, a fresh wave of snail mail containing an Inuit healing symbol sticker (thanks Luke!).  Which is all jolly kind and lovely, but I am sorry that people had to respond to what must have seemed like a cry for help.  And I have loads of help, I don’t need more help.  The awful thing is, though, when you are in the thick of it, help cannot even help.

So anyway, now you can read it as you know I am safely through it.  Phew.  And I apologise to seasoned veterans of low moods, but you have to understand that for someone whose default setting has always been happy/delirious/giddy with good humour, my change in emotional health constituted a crisis.

So I’m not gonna lie.  It’s been awful.  Feeling sick.  Sick of food, sick of blog, sick of life.  They go together.

I realise that whenever in life I have felt a bit crap, I could always make myself a nice boiled egg with salt and pepper and lovely chewy granary soldiers and a cup of tea.  I have always enjoyed a wonderful appetite for food and life.  Now food and even water can not help. Tea?  Ugh.  They do not comfort.  They make you feel worse.

I expected this to lift.  I am never down for long.  Honestly, I am irrepressible and bounce.  But it has not lifted.  Friends have tried to help.  Donuts and eclairs from Lesley.  Belgique with Arulesh and Lesley.  Ponies and breakfast with Debbie.  Baroosh with one Tina and veggie burgers with the other Tina.   Coffee with Juliet and Karen.  Prezzo with Jaki.  Green tea at Cath’s.  Supper at Sabine’s.  But all this did not get rid of it.  Nothing can take away this shivery despair.

I keep seeing that even if my nodules happen to be OK, other people’s are not and will not be.  We are all one suffering mass.  The boundary between myself and others from present and past has disintegrated.  How hopeless did Nanny Rene feel when cancer was getting her?  How did Mike Ullmann feel when they told him he had only a few weeks?   Fergus probably felt worse than this all the time, apart from when he was on a high.  I’m so glad he at least had those highs.

This is a page from my book of plants which Fergus borrowed for his horticulture course.  You can see his handwriting top right.

The close up of the handwriting looks like this:

The oncologist could have said I have twenty five large nodules in my lungs.  What would I have done then?  It’s random what they are going to say.  We are not in control.  I told Arulesh about this and she said  ‘Hester, we are never in control.  Of anything.’

I used to know this.  I used to like it almost.  The random nature of life was funny and threw up fun times.  Now I’m just scared of it.

I have been moping about, crying.  I have no control over that either.  Tears just plop out of my eyes.  Very strange.  The cancer is not a joke anymore.  The shock and energetic reaction to that has worn off.  I am really in this thing now.   I am re-mourning Ferg and other dead friends and relatives.  The garden is bursting with Forget-me-nots.   I look at them and creep back to the sofa with my blankie.

………

I can’t get out of it.  It’s not lifting.  For some reason, this nodule thing has been a big blow.  My psyche has been hit hard.  And I’m dreading the next FEC already.  I know why that clever woman doctor made me do T-FEC instead of FEC-T.  FEC-T would have made me despair from the start.

……….

I just wish I could get out of it.  Will phone Xynergy Superfoods.  Will go to Scotsdales Cancer Centre for therapy.  Will phone Kate’s Yoga for Cancer woman.  Need to redouble efforts.  Yet I feel burnt out, like I can’t do any more.  Even like it wouldn’t be that bad  just to give up.’

See now why I did not want to post that?  The Stiven Family Postcards alone would have broken the Postie’s back.

I suddenly realised maybe it wasn’t the nodules making me feel like this.  Maybe it was a FEC side-effect.  Most side-effects are physical.  You expect physical, so you might miss mental.

Anyway, somehow I understood I was being stupid to put up with it.  There are things you can do.   I phoned the homeopath.  (Actually, next time, please someone remind me to phone the homeopath.)  I left a message on her machine:  ‘Jane…. The Valley of the Shadow of Death is upon me.’

She phoned back quickly. ‘Hmm.  I think you need some Arsenicum.’

‘That makes sense,’ I replied.  ‘I feel like I have been poisoned.’   Arsenicum is made of Arsenic.   That nasty red stuff, Epirubicin, looked like a serious poison and the chemo nurse treated it like one.  He didn’t take his eyes off it for a second.

‘We’ll go in with a 1M,’ she suggested.  ‘I’ll give you some 10M to take if it doesn’t do the job.’

Wow.  1M is already pretty strong, that is, very dilute.  For the more mental levels you need a higher dilution.  She could tell I had gone pretty mental, don’t know how lol.

I took the remedy on the way home.  It’s easy as popping a tab.  Under the tongue.  Knew I had to go to bed when I got home.  Felt deep inner recesses of the body start to unfold.  Felt my mind kind of cave in on itself fractally until I was a long way in.  Saw myself suspended in the dark void with a platinum grey object gleaming just in front of me.  F*** knows what all that was about but felt like I was glimpsing something tres important.

Had another Arsenicum 1M before bed and slept all night.  Woke up and gingerly waited for the gloom to descend.  Cautiously expected tears to plop.  So far they have not.  Janet and David turned up saying they wanted to take over the kitchen and cook things.  We chopped aubergine and courgettes and made guacamole with garlic, mango, coriander and chilli.  Sat outside with a fire into the night.  Janet understands everything, as she is a cancer survivor and has been there.

I am cautiously welcoming a return to life as I know it.   Had breakfast of scrambled eggs from Ali’s hens.  One was massive, brown and speckled.  One was small, bluish, smooth.  Janet added crushed tortilla chips and chilli.  Mmm.  With guacamole on the side. (for breakfast, I know, very odd.  In Colorado they eat a lot of Mexican.)

Went to the ponies with Janet.  Brushed them and gave Princey his scratchy scratchies and necky rubs.  He gets special treatment as he is 35 and probably on his last legs.  Walked with Janet to my special beech tree which has a huge shady canopy and a pond.  We picked wild flowers and cow parsley.

BTW on Friday I asked the vet about the nodules.  She says nodules can be left behind after a simple chest infection and that there are many benign reasons for nodules.

Am still shaken, still feel a bit wobbly but I can see clearly now the rain has gone.  Am feeling my way back into my voice, as it had completely deserted me.

I have learnt a new sum:

Nodules Shock + Red Poison + Sudden Changed Hormone Levels due to Chemo = Depression.

Took me a while to get, but it’s not hard, that maths.

Exciting News Flash:  my friend and flute pupil Claire had her baby last Sunday:  Agnes, 7lbs 5oz.  We popped round to give her a squeaky giraffe and she is the most adorable, beautiful baby ever.

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Seasons in the Sun

It is the dawn chorus outside.  Half past four in the morning.  Katze is awake but humans are asleep.  So I thought I would bother you dear readers instead.

Thing is, I have hit a teensy low.

I plucked the Lung Nodules out of the back of Ferdinandos’ mind and popped them into Google.  You see, my cousin Jeanie had put a comment on my Nodules post.  It said ‘Sorry about the nodules, Hester.’  Hang on, Jeanie is a nurse.  She must know what the hell nodules are all about.  And if she’s sorry about them that means they are not good.

Within minutes of investigating lung nodules I became convinced I don’t have long.  Any lung nodules are 40% likely to be malignant.  Mine are more likely as I already have cancer.  And radiation to chest area as a teenager?  Not good.  And Metastatic Disease, which is what this would entail for me, is not curable, only treatable.  It kills many people.

Another worrying thing was that every time the main symptom came up for metastatic lung cancer it was ‘shortness of breath’.  I have had shortness of breath.  Well, more like shallowness and rapidity of breathing.  At night.

Fred says two little 7mm nodules wouldn’t make me short of breath.  He also says I’ve probably had the nodules for years, and they are probably due to a tiny injury from having the lung drained when I was young.  Kind Fred.  Although he was reluctant to pick Bash up from a party because he wanted to watch the football.  It was only when I boohooed ‘Bash doesn’t want a ba-ha-hald mother with a stu-hu-hu-pid hat on picking her up,’ that he realised I had got myself into a bit of a state.

Have been awake most of the night softly singing ‘We had joy, we had fun, we had seasons in the sun….’  and, a bit louder  ‘Goodbye Papa, it’s hard to diiiiiiie, when all the birds are singing in the skyyyyyyy….’  I mean, Mets means Stage IV.  I thought I was Stage 2.  I could handle Stage 2.  It would be a bit sudden to have to zoom up to Stage IV.

The thing is, life is sweet to me.  I have dear memories of our planet, as do we all. You can skip the next 24 paragraphs if you can’t stand the idea of a brief run-down of my lifetime memories.  I know it is self-indulgent but I want to note them down just in case the lunglumps kill me.

Age five, we rowed a little boat through the reeds in our ‘mango swamp’ on holiday in Achmelvich, Scotland. We would visit all our Scottish cousins.  Sometimes we went for lunch at Auntie Jean’s which was very posh as Uncle Bill was a General and they had a butler.   Age six I visited Great Granny in Jamaica and guzzled unlimited warm mangoes from the tree.  I remember camping in the Dormobile by a crisp cool lake in Switzerland eating the fish we had caught.  I made a first friend, Jenny Young, who made me realise that jeans were better than dresses.  At home we always had entertaining lodgers:  Sandy, Miriami, Carmen and Anna, Natalia.  I remember Auntie Lindesay playing the piano while I read Ferdinand the bull with Uncle George.  I can see my brother Fergus, in the garden at Barton Road, serving us up the first asparagus he had managed to grow.

I flick through memories like in a flip-book:  the cottage in the Highland village of Badluarach where we found Kimmy, our little dog.  Singing along to Abba songs and The Boom Town Rats’ ‘I don’t like Mondays’ with my brother Pete on piano.  A train trip to Nancy to stay with La Famille Brancher to learn French.  My first ride on a small black pony when we were staying in Newcastle with the Hovendens.  Fergus watching ‘Roots’, showing me anti-vivisection leaflets and helping me prepare my Health Food talk for school by making me declaim again and again Yudkin’s  ‘Sugar is a Pure, White and Deadly Poison!’  I remember him going vegan, cooking Mugi Miso and Apricots Hunza-style, training to be an athlete.

I have a whole mental flip book from our time in Bristol: the view over the city from Upper Belgrave Road, crazy-steep hills for biking, my thumb being hit by a hockey stick and the nail falling off,  the mad drunken loon who burst into the house when Pete was playing the bagpipes.  My dad told him to get out or he would call the police.  ‘Fook the Fookin Police,’ slurred the man. Our cat Pushkin was killed on the road  (not a good memory.)  I ran on the Downs with my sister and Kimmy, and spent weekends out in the Mendips with Georgina and her lovely eccentric family, the horses Firefly and Edward, her pony Silver and donkey Bertie.  I would take the train to Yeovil to spend a week in a caravan with Darylle, stalking poachers in the middle of the night and galloping bareback through woods smashing our knees on branches.

Then there was Cambridge again.  I cycled across a frosty Midsummer Common with my friend Hermes, she on her cool mauve racer, me on my square red bike.  Latin.  Science.  Maths.  French.  English.  Thank God for Mrs Findlay.  She would walk into the class and read us out loud the first chapter of a really good book, like The Day of the Triffids, for example.  The bell would ring and she would go.  That was it.  We would all go and find a copy of the book so we could finish it.

How could you forget interrailing with Nellen?  Our first brush with Greece.  Ios, the party island.  Conking out on the deck of ferries in our sleeping bags.  Then on my Gap Yah I split the time between Chamonix working as a waitress in a creperie and Greece again to learn Greek when I lived with lovely Yolanda, Lia, Yiayia Yola, Elza and Maki in Halkidiki.

I went to Oxford to study French and Modern Greek.  I loved it down in the bar with Jon, Tom, Dave, Jim, Duncan, Aziz, Becky, Christina and Hanna.  I accidentally knocked on Fred’s door up Cowley Road, looking for someone else.  He invited me in for a cup of tea.  We stayed up all night talking.

I asked Fred if he wanted to go to Greece with me.  He said ‘Yes’ before asking ‘How are we going to get there?’

‘Erm, we’ll have to hitchhike,’ I replied.

Fred spent a lot of time catching lizards on dusty roads.  We were slow.  It took us five and a half weeks to get there. When we got to Greece we sat in Igoumenitsa in a cafe.  Fred walked over the road and felt a tractor with his hands.  When he came back I asked him why he had done that.  ‘Just checking it’s 3D,’ he said.  We crossed Greece to Halkidiki to see my Yolandoula.  It only took us three days to get back home.  You learn the tricks of the trade.  Less lizards, more progress.  Only get dropped off at service stations.  Keep talking to the lorry drivers so they don’t go to sleep and drive you off the cliffs of mountainous northern Greece.

OMG what about the time in Amsterdam when Fred found he had a mouse living in his pocket as we had been living on bread and cheese?  All the druggies living in our very cheap lodgings thought he was hallucinating when he said he had a mouse.  Until it ran out of his sleeve.  Then they freaked out.

So back to the flip book:  a siblings’ trip to Scotland for our grandparents’ Golden Wedding, and stopping off at the beach at St Abbs on the way home.  The bells heard from my room in Oxford.  French novels, Greek poetry, Divinity Road for the second year and naughty chillums in Billy’s room.  Playing backgammon with Hanna.

We went to see Ferg in a play in Windsor where he was a gardener for the Queen.  Black’s Beach in California, boat trips, road trip to Mexico, tequila guns.

Ferg’s coffin being carried out of the church.  Just awful.  I will have to tell you more about this another time.

My third year in Thessaloniki with Annika, Anastasia, Angie, Audrey and Dino.  This was a hugely tricky time as it was just after Ferg died.  We ended that year with the discovery of Gavdhos, an island where you don’t have to wear clothes and you mould into the Juniper bushes and become part of the landscape.  After four months of building dry stone walls and playing Bally Bally with Taki and Giorgo I felt a bit better and Fred realised he needed a library and went to Edinburgh to study Computer Science.  Back in Cambridge in our mid-twenties we moved into number 207 Mill Road, painted flying teapots on the walls and held a Party of Special Things to Do with Wozzie, Barney, Bella, Cheryl, the strangely named Abigail Rainbird Tripp and the crazy gang including Ziggy and Dylan who gave us Zappy dog.

We hung out in The Empress and The Jubilee drinking bitter and playing pool.  I experienced a short and doomed career in PR but liked fundraising for Emmaus UK even though with all the junkies it got a bit intense and I ended up with not a few homeless people sleeping on my floor.  Then came moonlit explorations of Wandlebury at night with Oddly when she was a puppy and then we were living up the Roman Road in a Bedford CF van. The fire-throwers would be heading off to bed at six am just as Fred was adjusting his tie in the wing mirror to go to work.   Fred did learn to juggle fire and five balls during that time though.  Oddly got bonked by two naughty gypsy dogs in a bush and gave birth to two fabulous puppies, Funnily and Strangely.  I thought ‘If that little dog knows how to have puppies, then surely I know how to have a baby.’

‘Shall we make a little Alfie?’  I asked Fred.

‘Yes’, said Fred.  He had had a revelation one night.  It was that he did not have enough responsibility in his life.  Within a year the poor chap had a baby, a wife, a house and a little later a new job in London.

Thank God for Francoise’s yoga for pregnancy.  That started everything off well.  Chloe was born in hospital.  She looked very strange to me, like a little misshapen alien.  I was in shock.  I wanted to tell my mum that she had been born.  ‘There’s a phone up the corridor’ they said.  I pushed her very slowly in her little bassinet thing.  ‘Mum,’ I said, ‘it’s a girl.  She’s called Chloe.’

‘Oh!’ exclaimed my mum.  ‘Is she the most beautiful thing you have ever seen in your life?’

I looked again more carefully.  ‘Erm, actually, mum, you know, she really is!’  I said.  It was instant, just like that.  I loved my baby.  Which made it all very simple.  Plus she went to sleep for three months which helped.  Fred’s mum Irene absolutely loved Chloe.  She came over when the baby was four days old and just held her and looked at her for hours.

Tabby was eight days late.  She chatted to Gwanny and Gwampa when she was only twenty minutes old.  She wanted ding-dings all day and all night.  She would craftily wrap her fingers in my hair while I was feeding her so I could not slip away without waking her.  She was very funny and skilled at twizzling round in her bouncer.

Nellen, Levi and I walked up flowery tracks, breastfed our babies, made soup and toast and tea.  This is Levi with Nellen’s baby Olive.

I played high Cuban flute in a London salsa band with Annie.  (BTW careful if you play high flute because my old flute teacher Howard, now Hridrayamati as he is a Buddhist, tells me that flautist Jean-Pierre Rampal thought that the high notes drove a lot of players mad.)  Fred looked after the girls while I rehearsed.  This is Fred’s idea of childcare:

Chloe started play school.  Fred’s mum sadly was diagnosed with bowel cancer during this time and died too quickly for anyone to understand what was going on.  Fred’s sister Gwen and I both experienced an intense dream of her, strong and healthy, on a bus with flowing skirts and the children on her knee.  Isn’t that strange?

Then when Chloe was four and Tabby two we moved to New York for a two-year stint.  I cycled round Central Park and went shopping at Zabar’s with Karen (who is a chef on Good Morning America – you tend to meet the most incredible high-flyers in New York).  We swam in the pool on the roof of our 44 floor building, and learnt to rollerblade and did illicit dancing in the park fountains with artist Michelle who painted the crying woman on the piano and the African children on the drum.

Really sadly, Great Granny was in an accident in her car during this time and died a few days later in hospital.  I couldn’t go to her funeral as I was too pregnant and recovering from an op.  She never met Alfie who was born in a jacuzzi in a birthing centre on W13th St.

We spent weekends in Bear Mountain at Tabby’s teacher Janine’s little log cabin next to a bubbling river.  We discovered the beaches of Fire Island.  Annie came to stay and took me to Cuban night clubs to dance salsa.  We flew to San Francisco to stay with Michelle’s mum.  Michelle showed us round town and took us to Yosemite.

Flip flip flip.  I painted abstracts with babies a lot as it was one thing that kept Alfie happy.   We found our house in Bishops Stortford and knew it was the one.  Bashi was born in a pool in front of the fire at six in the morning.  The dogs went outside to bark the news to the world.  The neighbours’ kids came in bearing gifts on their way to school, three from next door and three from two along, like the shepherds and the wise men.  We have a wonderful photo somewhere of Fred’s Grandmother, GreatNan, smiling down at newborn Bathsheba.

I sang to babies and the babies sang to me.

Seven months later we went to Maisons Laffitte, France, again for a two-year stint.   These memories make me laugh:  on impulse, seeing a tall woman with two old dogs and a funny purple hat walking home with her daughter, parallel to us, I told Chloe to run over and invite them to her birthday tea party.  Turned out she was from Colorado.  We ran out of glasses at the party, so by the time we went onto beer, we were drinking it out of a kiddies’ plastic tea set.  Janet went to find a wine glass.  She looked inside at my tip of a house.  There was a hoover by the door.  ‘Is that an art installation?’  she asked.  I knew then that she was going to be my friend.  Her husband David turned up with six bottles of wine so we carried on deep into the night.  They went home forgetting to take their dogs Crow and Boingo with them.  We phoned them in the morning and said ‘Did you forget anything?’

Janet is sometimes a great help.  In a fit of doubt I asked her if I should take the leap and adopt two ponies from the riding school which was closing down.  She chuckled:  ‘You’re asking someone who comes home with a goat in the back of the car!’

‘And goes back and gets another goat the next day,’ added David.  ‘And then those goats have babies…’

This is Janet and me visiting Penel in Strasbourg:

Another night in France Fred nearly castrated himself on a small bendy tree.  He raised an old bed frame above his head to smash it for firewood but then started staggering backwards.  We witnessed his face making incremental steps towards a look of serious panic before the tree eventually popped out from through his legs. The resulting impulsion knocked him over and the bed smashed anyway.

Flip flip.  We brought the ponies back from their stables in France and turned them out into a meadow full of buttercups. Bash wore princess dresses for a year then, aged three nearly four wore her school uniform all summer (bleeeesss) even at Mangey Cottage in Glen Esk – she was that excited to be going to school.

I can still see my little flute pupils making their mummies weep as they played ‘Walking in the Air’ at our Christmas concerts.  I started as a helper at RDA.  Alfie started writing his little books.

Then my friend Arulesh’s daughter, Anjani, was killed in a car crash in Sri Lanka.  This was the most awful blow.  I understood because of Ferg.  We cried and cried for months and months.  I got Treacle for them as a dog was the only thing I thought might help.  Arulesh and I walked very slowly round the fields of Dane O’Coys with the dogs and talked about life and death.

We will never forget Hockerill teacher Mr Ullman’s revelatory exchange program which sent Chloe and Tabby to Germany, France, Spain, Belgium, Italy, Romania, Hungary and Rwanda.  This led to funny times with exchange students from all over the world – Miyuki from Japan making origami swans at the breakfast table stands out.  Miyuki brought her friends round to play ping-pong in the big room.  I asked them all if they would like to go to visit the ponies.  They piled into the Transit van and all started exclaiming in a mixture of horror and delight and taking photos of all the hay, head-collars, dog leads and rubbish on the floor of the van.  The ponies took one look at them and their flashing devices and galloped off snorting.

We all cried when we dropped Miyuki off at the coach in the Hockerill car park at six am, because I said as I hugged her ‘See you soon, Miyuki,’ as you do.  And Alfie said, ‘We won’t see her soon, Mum, because she lives on the other side of the world.’  But Ha!  Next October, Alfie is going to Japan and will be able to see Miyuki. (He will have to take new pictures of the inside of the car for her, so she can see nothing has changed.) So it wasn’t soon, but it won’t be never neither.  We thank Mike Ullman and his legacy for that.  He died from cancer not long ago which gutted everyone.

We have picked blueberries and dived in lakes with Annika in Sweden.  We bought half of a narrow boat with Barney.  Alfie learnt to play some stringed instruments:

There was Allycats, Operatics, Young Actors Company, Craft Ensemble.  Arulesh gave birth to a baby boy called Anish, and later a baby girl called Ishani.   Claire and I started a book group in the Half Moon pub.  I started Iyengar yoga with Lorna.  Fred drank with the DONS and took Alfie to football as he was goalie for the Stortford A’s. We returned to New York for Alfie’s tenth birthday to show him where he was born.

My friend Beth visited from France for an unforgettable marathon drinking sesh in the Half Moon.  Through Margeret’s pottery classes we discovered Pete Lemer’s underground studio.  And then there was Jammy Dodgers, the Musical, written by Chloe!

Tabby was on Eastenders as Lauren’s friend.  The girls dressed up every year to go to the opera with Aunty Lindesay and Uncle Peter.  I trained to be an instructor with RDA.  We became roadies for Chloe’s band Pandora’s Box.   We took plays to Edinburgh twice.  The dogs and I started up a new Friday walking group with Phoebe, Sally, Debbie, Louise.  I accompanied Chloe to Boston to study at Berklee College of Music and as we stepped out of the cab I knew it was the right place for her.  Amidst these snapshots there are thousands of others, some not so good, some, of course, quite awful and scary.  Each one can be clicked on to open the full story, sadly not on here, (yet!) but in my mind.

Thinking about all this mass of stuff that is my life, I see that really I have probably almost lived long enough.  (You spotted the ‘really’ ‘probably’ and ‘almost’ qualifying that sentence!)  You can pile a lot of excitement into 46 years.  However, until a couple of years ago, I often felt overwhelmed and too busy.  I wouldn’t mind having a couple of decades of calmer time to be an instructor at RDA, coach my flute pupils till I am sure they will never give up, reflect, read, drink gin with friends and wallow in Greek waters.

Oh, my, I have remembered a pivotal moment:  while we were in New York, a friend of mine, Terri, turned up on my birthday with a book for me about writing.  It was called ‘The Artist’s Way.’  She said ‘You said you wanted to write a book, so this will help you begin.’ I was very touched that this woman whom I didn’t even know that well was taking my desire to write more seriously than I was.  Coincidentally I received in the post a book from my friend Sarah in Saffron Walden.  It was called ‘The Politics of Breastfeeding.’  The two books together fuelled the creation of my book ‘A Breast of the Times‘.  Writing became important.

My Aunt Lindesay just sent me a copy of a five-year-diary that Great Granny at age 39 kept  from the years 1948-1953 when she was living in Ladysmith Road, Edinburgh.  It starts when Lindesay was 14 and my dad 12.  It is a fascinating read.  Great Granny is gone, but she’s not gone, as you hear her voice and feel her spirit clear as day.

So, what am I saying?  I don’t know, I’m in a state, I tell you.  What is important to us in life?  Education.  Stopping cruelty.  Making change.  My sister would say revolution.  Creating with a view to leaving something behind?   Fundraising for important causes.  Helping others.   That does reduce the pain and anguish.  But now others are having to help me.  (I admit they always have been helping me:  people felt they had to, because I had lots of babies and was messy.  Thanks for that.)

I am in less of a state now.  Typing out my life has been therapy.  Soz for being soz.  Now I should just start tidying up all the mess I’ve made.  I’ll tidy and Chloe will clean.

BTW Diabetes Newsflash:   at Tabby’s eventual teen diabetes clinic on Thursday at Addenbrooke’s this clever-looking chap with an impossibly quiet voice told her she has been injecting double the slow-release insulin she should have been for the last three months.  She’s reduced it by half on his instructions.  Her blood readings have shot up though.  We are trained to have ketoacidosis-fear so are WUZZED.

Exciting Newsflash:  Alfie’s best mate Alex Patton has been selected for England Rugby Trials.  Wowzer.  We are thrilled.

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Waking Chloe up for 10am was non-trivial as she’d only just gone to bed.  We nipped in to Sally’s coffee morning on the way for banana cake and green tea.  Then Park and Ride.  We walked into the Day Unit.  ‘How different is this from how you imagined it from the description in the blog?’  I asked her.

‘Totally different’ she said.  ‘I didn’t realise everyone would be sitting around the walls together.  I thought you would be in a little room on your own. And I thought everyone would be crying.’

Well, it’s obv she didn’t read it properly.  It is clear to me though that I have been lacking in descriptive skills.  Attempt Number 2 then:  patients either have a bed with sheets and blankets or a shiny leather-look dark blue armchair.  Most have another person sitting with them.  There is a drip stand on wheels by every bed or chair.  In the centre of the room is a giant table with trays full of drug bags or syringes, and equipment like tape, tubes, needles etc.  On small tables beside each chair there are cardboard receptacles for throwing up into.  There is a trolley where your helper can get tea.  The windows are massive and there is good natural light.  There are two other connecting rooms off the bigger room which hold maybe six or seven armchairs.  Patients trundle their drips to the loo regularly because they are drinking like mad to flush out the poisons.  The atmosphere is pretty chilled as most people are laughing and greeting each other like old friends.  A few seem more anxious and still.

My nurse today was Sanjay.  He told us he was from India and Mauritius.  He was extremely skilled.  Gave me anti-sickness and some steroids.  Waited twenty minutes.  The needle went in with no pain.  With FEC the nurse has to stay for the entire infusion time and keep watch.  He checked my hand constantly for leakage around the vein.  He had four syringes on a tray which he inserted one after the other into the tube feed.  Two big red ones, Epirubicin.  It is strong, he told us.  He seemed less worried about the two smaller syringes with the Fluoro-whatever-it-is, and the Cyclo-whatever-it-is.

Chloe went and chatted to my chemo-friend Heather who was sadly four seats away from me.  ‘I put you in the blog, Heather,’ I shouted.  ‘Do you mind?’

‘No, not at all,’ she yelled, looking pleased.

Oh, good, I’ll do it again then.

Came home feeling fine.  Ate a big sprouty salad with Chloe.  Won’t say what was intilt as thinking about food is now making me feel sick.  Claire came round and we made snacks for the Ladies’ Club.  Won’t mention them either (snacks not ladies) as might make vomcanos.  The ladies don’t make me vom, I love the ladies.  We got the Dubonnet and Cinzano and lemonade ready.  Lit a fire and gathered the sofas round it.  We cocked our pinkies at the ready.

If you have been paying attention, you will know that because nobody drank any gin at the last Gin Club, we are investigating if a ‘Ladies Club’ could match our requirements any better.  For my readers from far-off climes, we are referring to a sketch from a TV show called Little Britain that involves two blokes trying and spectacularly failing to be Ladies.  Yes!  The blog has gone global: 1 hit per day from Indonesia (my friend Dave), 1 hit from Sweden  (Annika), 1 hit from the United Arab Emirates (our friend Claire-who-lives-in-Dubai), 1 from Peru (that’s Nay), 1 from Fred’s mate Jai in India, 1 from Jill in Australia, 1 from Triffi in Hong Kong … I could go on.  Plus loads from Europe, Canada and the US.  You should see the stats map light up!  Thrilling.

Anyway, Mad Lucy’s Nigel heard about the Ladies’ Club and  made me this lovely pic.  This time I didn’t have to dress up for it.  It’s FAKE.

God though, my friends couldn’t be more crap at being Ladies.  I had to tell Claire off for burping raucously, and chatise Mad Lucy for sprawling about in her leggings and flashing her boobs (again!).  I also had to give several warnings to a friend-who-shall-not-be-named (she has internet phobia so shall be referred to as ‘X’ even though her name obv doesn’t begin with ‘X’) that her laugh is not befitting of a Ladies’ group.  She must tinkle and titter, not howl nor roar.

I drank superberry juice with the merest dribble of Dubonnet because I had vomfear, which ended up being justified.

Am currently sitting up, very still, in bed.  I think I got the yellow anti-sickness tab Ondansetron down me just in time.  Am fighting serious waves of nausea though.  There is no escape as the steroids keep you awake.  Fred brought me sticky rice and ….oh, sorry can’t say, will vom.  Had to send it away.  Bucket at the ready.  Just reached the point of moaning and groaning when I remembered the other anti-sickness pills (Domperidone) which seem to be helping.  I am nevertheless incapacitated, so Chloe has helped me type (hey friends, you guys literally ROCK!).

BTDubs, Blog Wars or wot?  Fred’s blog has also gone ‘global’ but I’m not wuzzed:  his will never be The Breast.

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Nodules

I am going for chemo today at midday.  Just thought I should update quickly as a lot of things have happened.

Yesterday I went to Oncology to have blood taken.  Ferdinandos walked in with a different nurse, Eileen.

‘I have to tell you some things…’ he said  ‘..as we have the results from all your scans.’

I braced myself, as you do.

‘We don’t want you to worry but….’ he said.

Oh, hells bells.  My mind flicked through all possible scenarios.  Body riddled with cancer.  Two weeks to live.  Put affairs in order.  Make a will.

‘The CT scan showed two small nodules on the lung’ he said.  ‘We don’t know what they are.  They are very small, 6mm.  They could be nothing.’

‘Nodules….lung,’  I said.  ‘OK.’  I realised my heart was beating fast.

‘For this reason we do not recommend the trial.  For the trial you would need completely clear scans.’

‘It’s just protocol,’ reassured Eileen.  ‘The nodules are probably nothing.’

Oh, OK, no trial then.  Ferdinandos looked a bit disappointed, but still jolly handsome.

‘Sorry,’ I said.

‘It’s not your fault,’ he said.

‘Could the nodules be cancer?’ I asked.  You have to ask, otherwise you are annoyed later that you didn’t and you have to wait three weeks before you can ask again.

‘They could be metastatic disease, yes,’  he agreed.  ‘If they were bigger, we would put a needle in them and biopsy, but they are too small….I think it is unlikely, but we will keep them at the back of our minds.’

Poor man, having to keep lots of people’s nodules at the back of his mind all the time.

He then told me some good things:  my ECG showed that my heart is fine. Nothing wrong with it.  This means I can have Herceptin.  Also, my bones are all fine.   He also told me what the ultrasound people had already told me.  That the lump has shrunk from 16mm to 11mm.  I asked him if there were any other measurements.  He said the only other measurement was 10mm which has not changed.  Oh dear, we will have to recalculate.  Funny that it has shrunk in one direction and not in the other.

We shook hands.  Eileen said on the way out  ‘You know, you shouldn’t worry about it.  We probably all have nodules, we just don’t know about them.’

‘Yes, thanks, that’s true,’ I smiled.

The nurses are so kind.

I am packing my remedy, my warrior, my green tea flask, a bottle of water.  I am slightly wuzzed about this FEC thing, as Claire’s cousin Becky started it last Friday and says she feels worse than after her op.  ‘At least then I didn’t feel ill.  It was just painful which can be managed.’   She says to take the anti-sickness stuff as soon as you feel sick.  She made the mistake of going to lie down to see if it passed, and then threw up for hours.

Guess who is taking me to chemo?  Chloe!   She is back from Boston for the summer.  She has learnt to clean.  I know, very odd.  But she wakes up as we are going to bed and goes to bed as we are waking up.

BTW Fred has started his own blog.  (It’s not normal, don’t go there.)  So now both of us will sit around tapping away while Chloe cleans up lol.

Oh, all right:  if you want to check out Fred’s blog the link is:  Fred’s blog  .  It’s very helpful if you can’t get to sleep.

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Susanna’s bra

Susanna survived the 26 mile trek round London in the middle of the night, but it was painful. Och, the crazy loon right enough. Here is a picture of her and Emily in their bras. It is pre-walk. Apparently after the walk they did not look as bright. Yes, those are pictures of my face on the bra! This means I too power walked round London multiply while one of my selves slept.

In Susanna-the-hero’s own words: ‘7 and a half hours, non-stop, through the very cold night, dodging the drunks and the perverts, of continuous power walking to finish the 26.2miles in Hyde Park this morning at 7am. We are both in a state, we have both now aged 70 years and we both need new hips, knees, thighs and bum cheeks please!’

Turns out Jill-of-the-1867-maths-problems-fame and family did a run for breast cancer out in Australia too. Here is a picture of her two eldest letting off balloons for friends back home.

Thanks guys!  How groovy that I have a balloon with my name on it floating about on the other side of the world.  Hope it is biodegradable and will not choke some koala bear or wallaby.

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Something interesting happened at gin on Friday.  Mad Lucy noticed it.  It was that no one drank any gin!  She is well upset. Thinks that the gin club is in jeopardy. That we might have to start calling it a ‘Ladies Club’ instead. I think this could be quite a hoot.  We could even start to accept our advancing years and go for tiny glasses of sherry, such fun!

My friend Claire-who-lives-in-Ireland (not Turbo-Pimms-Claire nor Flute-Pupil-about-to-have-a-baby-that-is-light-Claire) messaged me on Facebook to say she was sad because she didn’t have a gin club.  I told her that all you need is a bottle of gin and one friend.  (Hell not even a friend, an acquaintance will do as they will surely be a friend by the end of the night.)  ‘You make it sound so easy,’ she said.  Lol.   You’d think they’d have Guinness clubs aplenty in Ireland, who needs gin?

I’ve been thinking about all the activity that has gone on around this cancer thing. (And I’m not talking about the fact that if a day goes by and I don’t go out for lunch I feel hard done by.)  I get appointments piling through the door for the Breast Unit, the Day Unit, Oncology, scans etc.  The Breast Care Nurses phone up to tell me an appointment has changed.  The trial nurse is really keen that I bring urine for her.   If I compare all this to what Tabby has been offered since her Type 1 diabetes diagnosis in January it is really shocking.  Absolutely nothing, is what she has had.  She got out of hospital on the 26th January and she has seen nobody since, not a soul.

Most of our friends and acquaintances know what happened to Tabby, but in case you don’t know: a week after New Year Tabby took to taking a bottle of water everywhere with her as she felt so thirsty.  She mentioned it to me a couple of times.  The third time she said ‘I’ve been getting up four times a night to refill my water bottle. My eyes have gone blurry. I feel so, so sad for the poor African babies who don’t have anything to drink.’  I suggested she look up the symptoms of diabetes as the thirst thing kind of rang a bell. She came downstairs minutes later and said ‘Mum, I’m ticking six out of six boxes for diabetes.’

Seven thirty the next morning we were queueing at the doctor’s.  At ten past nine she was seen.  She said to Dr Hunukumbure:  ‘I think I have diabetes.  I am extremely thirsty, I wee all the time, I have no energy, I have dry skin, I have blurry vision and I’ve lost weight.’

Oops.  We forgot that they really don’t like self-diagnosers.  The doctor said, ‘I’m not convinced.  You should drink less so you wee less, put E45 on your dry skin and go to the optician for your blurry vision.’

How interesting that a doctor wants to split up symptoms that clearly go together.  The complete opposite of what a homeopath would do.

Tabby persisted:  ‘I haven’t eaten anything since eight o’clock last night so can I have a blood test now?’

‘No,’ said the doctor. ‘You can come back next week for a blood test.’

Tabby was too ill to fight and came out in tears feeling humiliated and stupid.  We now know that a finger prick blood test would have taken about twenty seconds to do.  Tabby now has to do it seven times a day after all.

A week later the doctor had the blood test result and called us to speak to Tabby. ‘She’s too weak to come to the phone, she’s in bed,’ I said.  The day before I had had to pick her up from school for the first time ever as she felt weak and sick and could not see properly in her drama class.

‘You should come in tomorrow and speak to the diabetes nurse as her blood glucose is very high,’ said the doctor. She did not tell us to go straight to A and E then, which was another unforgivable error.

The next day we queued again from half past seven in the morning, outside in the cold with Tabby leaning on me, pale and covered in weird spots.  Saw the nurse, who was suddenly terrifyingly nice.  Like, gave us her personal phone number?!  Accompanied Tabby to have more blood taken with her arm around her?!   She tested Tabby’s urine for ketones which were all positive.  Having high blood sugar for such a long time  (the thought of that extra week makes us seethe) had given her ketoacidosis of the blood, when your liver is breaking down fat due to the inability of your cells to access energy.  This meant she was dangerously ill, but nobody told us that at the time.  Alarm bells did start ringing when the doctor called through to the nurse’s office and spoke to me on the phone.  ‘Are you going to be alright driving her to Harlow A and E?’ she asked.

I paused.  Did this mean there was another option?  Was she half offering me an ambulance?  ‘Yes, I am’, I said finally, wondering how the hell ill was my daughter and thinking, ‘I can get her there fast, let’s not wait for an ambulance.’  The A and E people said she was so ill her organs could have shut down in which case an ambulance would have been a better option.  I think the doctor did not want to make her mistake more obvious by sending her in an ambulance.  Crazy, because if Tabby’s organs had shut down as I was driving her there, that would have been another dreadful mistake she would have had to live with.

Tabby was in the Trauma and Resuscitation Room for ten hours wired up to lots of machines.  Doctors kept trying to get blood out of her veins but there wasn’t any.  She lay there crying in shock and murmuring ‘I  knew I was ill.  I knew that doctor was wrong.’   She was on a ward for a whole week on two drips to restore her glucose levels to normal.  She has to test her blood seven times a day and inject insulin four times a day for the rest of her life.

One thing I keep in mind all the time.  Nothing that I have had to do so far with this cancer is as bad as your child being dangerously ill.  I held her rag-like hand and wished and wished that I could suffer her illness for her.

The day of Tabby’s discharge, the 26th January, a diabetic specialist came to her bedside and talked for an hour, and a dietitian stopped by and explained some sheets with lists of different foods and how much insulin you would inject for each.   That was the last time anyone from the system volunteered information or interest about her diabetes.  We queued again at the doctor’s the week after Tabby got out of hospital to request Addenbrooke’s for clinic visits.  There is a teenage diabetic clinic there and Tabby is interested in taking part in trials.  A card eventually arrived with an appointment for mid-May.  So, get this:   the system sends you home, fresh from a two-week-long life-threatening health scare, to three and a half months, that’s sixteen weeks, of absolute vacuum where you are effectively learning on your own how to fulfill the function of your newly dead pancreas.

Elliot’s mum, who is a diabetic nurse, says that something must have gone wrong.  She maintains that a diabetic specialist should be phoning Tabby up every third day to check up on her.  I don’t know, but I heard on Radio 4 that there are too many new patients and too few specialists so this sort of neglect is unfortunately becoming commonplace.

Of course, when the system fails the community luckily kicks in.  Kindly friends have put us in contact with long-term diabetes patients who have printed out reams of information for us.   Other knowledgeable friends have run round with blood testing strips late at night and have given advice and comfort.

It’s gutting though to realise how much illness can strip us of who we are.  When Tabby was but one year old she was not afraid to speak her truth.  We turned up for a visit at Great Granny’s house.  There was nothing Great Granny liked more than our visits, a chance to admire the babies and have wonderful lengthy conversations about Jane Austen, Latin, writing, politics.  I often found visits slightly stressful, as she had jolly high standards.  I had to scrub the kids up and make sure not too many heaps of rubbish fell out of the car as we arrived.  Tabby was clutching her dolly.  She had three dollies:  Gangan Wawa (the one Gwanny gave her), Mama Wawa (the one I gave her) and Baba Wawa (the baby dolly).  Today she had brought Gangan Wawa with her.  We were still out on the street when Great Granny spotted the dolly and exclaimed brightly ‘Oh, and who do we have here?’

Tabby said, ‘Dat moy Gangan Wawa.’

‘Oh, dear,’ tutted Great Granny disapprovingly, ‘That’s not a good name for a dolly!   We’ll find a proper name for her.  Why don’t we call her….Emily? ‘

Tabby locked eyes with Great Granny and announced very clearly, ‘DAT…MOY….GANGAN….WAWA.’

Great Granny, despite being a formidable character, knew when she was beaten and, muttering ‘Well!  Some of us know our own mind!’ stepped down.

Here is a picture of Tabby when she was about two.  Does it look like you can mess with her?

Interesting then that the seventeen year old Tabby knew she was very ill, yet allowed the doctor to dismiss her symptoms.  She should have said to her ‘DAT…MOY….DIABETES….TAKE…BLOOD…NOW….MORON.’  The problem being, of course, that you mostly only go to the doctor when you are pretty ill.  And when you are ill you don’t have the strength to stick up for yourself.  She came out in tears to tell me about the E-45, the optician and having to drink less so she would wee less.  Wow.  You know, both of us knew it made no sense.   We didn’t want a diabetes diagnosis, but we just knew it was a diabetes diagnosis.  But we put up and shut up.  Because part of us still believed (not any more) that after all those years of training, the doctor must know best.

So, the lesson:  we have to remind ourselves all the time that we are a hugely valuable part of our own medical team.  After all, only we know how we are feeling.   Apparently patients who the doctors remember, the ones who make a bit of a fuss and ask lots of tricky questions, do better.  We should remember that this whole diabetes/cancer thing is evolving.  We can be part of new discoveries and new ways of doing things.   We must keep a critical eye, keep on the ball, be proactive, research things, ask other patients.  And keep hearing Simba’s daddy’s voice:  ‘Remember whoooo yoooooo aaaaare!’  Don’t let the bloody illness strip you of Whooooo Yooooo  Aaaaaare.

Phew, all that was quite heavy, so I’ll reward you with another daft lols story from the Tingey archives.  On another visit to Great Granny’s I was carefully pouring the tea out of the beautiful tea-pot that she had brought back from China.  Great Granny had nipped off to ‘visit the downstairs bathroom’.  To my horror, I heard both Chloe and Tabby, aged three and one, hammering on the door of the bathroom.

‘GWEAT GWANNY? ‘ they shouted.  ‘ARE YOU DOING A WEE WEE…..OR A POO POO?’

There was a stunned silence from within. ‘Girls…girls!’ I hissed, ‘Shhh!  Come here!’

‘GWEAT GWANNY!!’  knock knock, ‘CAN YOU NOT HEAR US?   ARE YOU DOING A WEE WEE….OR A POO POO?’

A faint voice came from behind the door.  ‘I don’t discuss such matters.’

Eek, aaargh, big cringe.  Great Granny and I both made sure we got back on the subject of Jane Austen pretty quick.   Chloe and Tabby sadly never found out if it was a wee wee….or a poo poo.

At a lovely supper last night at Nellen’s I met up with a friend, Colleen.  She loves the blog.  She said that once we get to forty five we have an advantage over the youf as we are not afraid to ‘tell it as it is.’  I didn’t really realise that I was ‘telling it as it is.’  But now I know and it kind of makes sense.  And though Great Granny would maybe not approve of me choosing the stories above over all other possible stories, she was a writer all her life, she absolutely loved high drama and a good story and I think she would have approved of the general attempt to tell things as they are.

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I visited the Breast Unit this afternoon.  It was for an ultrasound progress check as I am almost halfway through chemo (I have had three lots out of six, for eight weeks out of eighteen) to see what is going on with the lump.

A trainee first asked me where I thought the lump was.  I showed her and she managed to locate it on the screen.  She had a little look around.  Then the doctor took measurements.  She said they would send the report to the oncologist.  I said the lump used to be 16mm, but that I was only given one measurement.  She said now the largest measurement they could find was 11mm.

This is good.  It means the chemo has been doing things.  But a difference of 4mm!  Blimey.  For all this effort.  You can see why people use battle imagery in describing their dealings with cancer.  I’ve been on the chemo for eight weeks.  Two weeks needed to shrink  each millimeter then.  Slow going in anyone’s book:  think squelchy, swampy ground, thorny thickets and plagues of locusts.

Thought about it all the way home.  Had almost got my head round it.  Told Fred about it.  He unfortunately sent all my calculations haywire by telling me I needed to cube the millimeters.  Aargh, panic, three-d shapes.   No, said Fred, this is good.  My progress is apparently much more than I thought as I was wrongly thinking linearly rather than in terms of volume.  What are you expected to do if you are only ever given one measurement though?

Fred took it upon himself to be my teacher.  He grabbed an orange, a lime and two jugs (lol not intended).  The orange was not that much bigger than the lime in diameter.  We had to watch how much the water rose up the jugs when he put the orange in one and the lime in the other.  The orange made the water rise twice as much as the lime if not more.   Fred was trying to show me that, given the change in measurement, the tumour has probably, depending on its shape which remains an unknown, more than halved in volume.  I think.  I can never be sure with maths and find my eyes glaze over easily.

Fattipus was very interested though as he is a scientist.  His real name is Lucifer Archimedes Benjifluffles Fattipus. Bash called him Lucifer as she had found it in some Disney movie, Fred called him Archimedes as he had an obsession with the kitchen tap, Ben of the snailmail postcard called him Benjifluffles (I know, how come Ben gets to name the cat?) and I called him Fattipus, as he truly was one.

Fred kept saying that the lime was three quarters of the size of the orange.  ‘Hang about’ I objected, ’11mm is not three quarters of 16mm.’  See, I can do elementary stuff.

‘No, but it very nearly is,’ said Fred.

Hunh!  He wants to pretend my lump is 12mm instead of 11!   He means to ignore that hard won millimeter that took me a whole two weeks to shrink?  Cheek of it.

We then decided that the lime’s shape was warping our calculations.  Found an olive and a blueberry that better suggested the ratio we wanted.

My maths insecurity stems from sitting next to cute, high-flying twins Jill and Pippa when I was seven.  After one week at school, they were on problem number 1867.  I was on problem 6.  That was it really.  Staring in defeat at their bulky notepads bursting with neat figures I knew I was destined for the slush-pile.  I mean, how could you ever hope to catch up?   The only option was to keep struggling onwards, six problems per week, while they steamed ahead and disappeared over the horizon.

It is fantastic that some pupils are seriously motivated.  No one should set out to pop their bubble but something really should be done to stop high achievers from annoying people who are crap at maths.  Thinking about it, simply being put in sets would have helped.  Or maybe the Jills and Pippas of this world should just go to uni a decade early and let us plodders be.  They must have really enjoyed maths to spend such vast amounts of time doing it at home.  And it all resulted in them becoming brilliant doctors.  I just went home from school and sat dreaming in the lilac bush or swung on the rope and read pony books.

It did mean I made a friend for life though.  The maths results list was put up on the wall every week.  The first week Hester was at the bottom, Darylle second bottom.  The second week, Darylle bottom, Hester second bottom and so on. The class would cluster round the list to squeal and mutter names.   There was a sad inevitability about it over which Darylle and I eventually laughed and bonded.   We found that we had read more pony books than anyone else for which we awarded ourselves secret A*s.   I now appreciate that these early lessons in the necessity of remaining upbeat in the face of weekly humiliation developed my understanding of humour as a massive source of relief.

Must just say, I am still friends with Jill and Pippa whom I love dearly and have forgiven for unwittingly denting my self-esteem. They would probably say that I dented theirs, anyway.  We have shared big lols.  And to me, big lols will always be more important than maths.

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