Little Vomcanos? No Ta Very Much

I set off for the train clutching my huge pack of notes and my new green tea flask sent over from Gwanny’s fwend Lissi’s daughter Triffi in HongKong.  Grampa picked me up from the station, took me to the day unit, got me more tea, passed me my water bottles, checked the maths.  Our chemo nurse today was Jessica.  She was lovely and very together.  She tutted over the vein we used last time, as it experienced a bit of leakage into the tisssue, was itchy and red about a week after the chemo and is now discoloured.  She chose a new one nearer the thumb.

The lady next to me was called Heather.  She has a pic line fitted in her upper arm, as she has to have chemo every week and would soon run out of veins.  Her breast cancer has come back after eleven years and has metastasized to bones, liver and lungs. She’s good at saying that word, metastasized.  The trick is to put the stress on the first ‘tas’, the second syllable.  The symptom which led to the discovery of her cancer in the bones was backache.  She was full of cheer and stoicism though.  She used to be a midwife.  We talked about home births, water births.  Her daughter is eighteen and is called Chloe like my Chloe.  Her son Harry was picking her up.  He is twenty one.  We said we would meet again in three weeks.  Same time, same place.

The lady on the other side had breast cancer too.  She has just finished three sessions of FEC and had her first Docetaxel today.  I was able to suggest a few things that I have learnt so far as she has heard of the dreaded aches.  I told her to have some codeine in ahead of time, maybe to see a homeopath to find her constitutional remedy and to take B vitamins (recommended by other patients on the Macmillan blogging site).  In turn she told me that the FEC caused her to feel very sick for the first five days, but for the second cycle the doctors prescribed some very good anti-sickness pills which worked.  I’m going to aim to have them ready for my first cycle and be done with it.  Who wants to be chundering everywhah making little vomcanos all over the place for five days?  Not me.

The trial nurse, Cat, came by to fill in more answers on the forms and pick up a urine sample from me as they have to check I’m not pregnant and other things.  That would be really sad.  Toxic radioactive baby.  Poor thing.  And at my age, we would have to pretend it was Chloe’s.  I was impressed as Cat told me she looked up Carcinosen last night online as she was interested in what I had said about it.  I told her she might end up a homeopath lol.  I asked her how many people are on the trial.  Get this:  I am only the third person at Addenbrooke’s to go on it.  This is a surprise to me.  I had imagined I was number six hundred and seventy eight or something.

Facebook comments on the radioactive bone scan stuff have prompted ideas for a wicked story, some of the details courtesy of fb friend Catherine Barry.  Was hoping the steroids would write it for me during the night, but that didn’t happen.  Will try now before they wear off.

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Not a Pout in the Place

Well, the fashion show!  What to say?

Firstly that I chose to wear not only Mary’s hair thing and Peruvian beads from my friend Nellen, but topped the look off with a fabulous new hat from Annie who sent it with the blessings of the Camden Market hat lady.  Took a cab with six friends, two of them fellow breast cancer peeps.

There were at least five hundred people there.  Looking at the information on my seat I learnt that funds raised will improve access to clinical trials as well as supporting the Fabulous and Beautiful charity set up by Ashraf Patel at St Margaret’s Hospital, Epping, in November 2009.

There was not a pout in the place.  Nor a sultry walk.  The fifteen models danced onto the catwalk in dresses by Mariposa Formal Wear. They were radiant, exuding bounce and delight. You could just tell that they had all got past that place where you care about what people think of you.  They couldn’t give a damn about the small stuff.  They had each chosen a favourite song to come in on.  All of them have been through mastectomies, lumpectomies, chemo or radio.   I absolutely loved it and clapped till my hands fell off.  Smiled and laughed till my cheeks ached.  And found that along with most of the audience I was crying my eyes out.  Our friend Gill was beautiful in purple:

Then the men came out, modelling wondrous gladrags.  I’m not sure anyone was expecting that.  They too were laughing and dancing, confidently twirling the ladies.  Some had done fundraising walks in Peru and China and are preparing for an Everest Base Camp expedition and a coast to coast Cuba trek.  A young lad modelling a nifty suit did a back flip.  The commentator joked about him being fresh from Paris and Milan.

The ball of energy behind the whole thing, Ashraf Patel,  dressed in long sharply cut pale golden tails, rocked up the catwalk.  There was huge applause for this incredible surgeon and fundraiser.  Apparently he dedicates his whole life to the cause.

All the models then came out together.  The two at the front waltzed to the end of the catwalk, looked at each other, grabbed their wigs and chucked them into the crowd, fuelling the the increasingly raucous atmosphere.

The FAB team have created a book out of the event called Life is FAB and were launching it there and then.  Print and broadcast journalist Wendy Pike, ‘finding tales from real life more fascinating than fiction’ did the writing for it, helping the volunteers and models to share their ideas.  The FAB  lead stylist Anita Gray explains her involvement:  after visiting a friend who had had surgery for breast cancer ‘It struck me that chemo-induced hair loss and breast surgery must add up to one of the lowest points for any woman’s self-image.  Being a stylist and colour consultant I felt that I had a lot to offer ladies facing the same situation.’  The monthly meetings include Reiki, Reflexology and free professional beauty treatments.  Her description of the way it works reminds me that again, so much revolves around the need for informal communication: ‘Often queries come up that ladies haven’t felt able to ask during medical appointments.  We can ask the experts and pass on the information informally in relaxed surroundings.’

(Maybe I could ask them to explain homeopathy to Ferdinandos for me.  Although my friend Pete has rightly pointed out that in Ferdinandos’ eyes, the remedy is diluted to a point past where he would consider it to contain active ingredients, so the next time he asks ‘but what’s intilt’, I can legitimately say ‘water’.)

The way the meetings work can be seen too in Ashraf’s long quote from a patient’s daughter in his foreword.  Loving the way he trusts this girl to say it all better than he could.   The girl says  ‘I went along to a meeting with my Mum who has breast cancer and within minutes of being there, the women were roaring with laughter at every opportunity.’  This is it, you see.  Roaring with laughter is key:  it facilitates exchange of information, because laughter is infectious and relaxes people.   ‘These women are not feeling sorry for themselves,’ the girl notes, as they have ‘an inspirational determination not to let cancer get in the way of glamour and living.’

I would probably have put ‘living’ ahead of ‘glamour’ there, but you get the gist!

Each model has their photo in the book, with their comments on what they have learnt, how they got through it.  I love what Carmel, the photographer, has to say.  Despite choosing not to have reconstruction, it is her beautifully gowned breast gracing the front of the book.  ‘I am fascinated and appalled with women’s obsession with reconstruction.  It’s not something I’d ever do.  It’s indicative of a society that is so obsessed with breasts.  The only people who will see me one-breasted are medical staff or people who love me.  I don’t want to give one minute of my life to a hospital for something which is just a society pressure.’

Bloody good points there, Carmel.  I am thinking on it.  (And btw thanks for saying I can use the photos.)

Later one of the models, Sam, came up to me.  ‘I’ve been feeling so drawn to you all night!’ she exclaimed.  ‘Just had to come up and say hello.  Loving your hair/hat combo.’

She’s been through breast cancer and is out the other side.  She so much wanted to know about what was happening to me that I mentioned the blog.  I wrote down on a scrap of paper ‘Hester Tingey The Breast Blog in the World.’

This led to one big wowzer moment.  ‘OMG I don’t believe this’ she cried, once she had managed to focus on the name, being more than a bit tipsy.  (Give us a break, who wasn’t by this time what with the free champers?)  ‘You are Hester?!  Incredible.  I’ve been trying to write you a card all week!  My son Brandon is best friends with your Alfie!  Love Alfie!  What an absolute charmer!  Do you know, he was the first lad from Hockerill to come round our house after we moved in.’

I am always chuffed when people spot the charmer in Alfie as he doesn’t tend to flaunt it much at home.  Two friends had mentioned Brandon’s mum to me and the fact we should get together but it just had not happened.  Got so excited we did, I nearly missed the cab ride home.  This is Sam’s picture from the book:  lovely to meet you, Sam!

(BTW in case anyone wants a copy, the address given on the back of the book  is  Fabulous and Beautiful, Breast Clinical Trials Office, Birchwood House, St Margaret’s Hospital, Epping CM16 6TN.)

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Blog Fodder Lols

Despite Oncology being packed full of ill peeps, I didn’t have to wait at all.  Straight after bloods, I was put in a room and the Thessalonikian walked in with two nurses.  I was so happy.  My friend!  He wasn’t too chatty today though.

‘How have you been reacting to the chemo?’  he asked.

‘Well, the first time I had aches and pains, then sore feet for the first few days.  The second time I had flu-like shivering and aches but managed to make the symptoms go away with a homeopathic remedy.’

His eyebrows went up.

‘That’s OK, isn’t it?  To take a remedy I mean?’ I asked.

‘I don’t know what it is.  What is the name of it?’

‘It’s called Carcinosen?’

‘I do not know what is in it.  If I don’t know what is in it, I cannot tell you if it is OK.’

‘Well, it’s made of cancer, funnily enough.’

‘Yes, but I do not know what it is made of.’

‘It’s made of human cancer.’

‘I do not know how it is made, or what things have gone into the production of this, so I cannot tell you, really.’

Hmm.  I was flummoxed.  Being always aware of the packed waiting room outside, we moved on.

Reminds me of a story Peggy used to tell.  Queen Victoria used to walk around the estate of Balmoral Castle and go in to the workers’ cottages and sit down and talk with them.  One time a Scotch Broth was bubbling away on the stove.  The Queen asked what was in the Broth.

The peasant scratched his head and said ‘Well, there’s onion intilt, and there’s mutton intilt, and there’re tatties intilt and there’s….’

Queen Victoria interrupted him:  ‘But what’s ‘intilt’?

‘Well, there’s butter intilt, and there’s parsnip intilt and there’s turnip intilt and there’s…’

The Queen interrupted again:  ‘But I don’t understand:  what’s ‘intilt‘?

‘Well, there’s carrot intilt and there’s barley intilt and there’s leek intilt….’

‘But what’s ‘intilt‘, man, what’s ‘intilt’?‘  shouted the Queen in frustration.

I think the story just carries on in the same vein ad infinitum,  ‘Well, there’s chives intilt and there’s parsley intilt and….’ but if any cousins remember a punchline, please add it in the comments.

It was a bit like that talking to the Thessalonikian.  BTDubs!  I have found out his name!  You’ll never guess:  go on, TRY. No, you really never will.  It’s FERDINANDOS.  Isn’t that rather magnificent?

We had to fill in around ten sheets of info for the trial.  And then almost the whole of me had to be examined.  Ankles, abdomen, neck, skull, face, eyes, ears, teeth.  He tested reflexes, listened to heart, shone his torch up my nose (I know, bizarre), made me focus on his nose while waggling his fingers in my peripheral vision.

‘Yes, I can see them wiggle…..I see them!  I see them wiggle…..I see them wiggle.’  I scored high on that one, I know I did.

During all this the nurses stood present, averting their eyes, looking at the wall.  I had to press his arm down, then out, then up.  Whenever the sheet that you are meant to clutch around your boobs fell down due to me having to use both arms for a task, the sweet nurse (she’s called Cat) pushed my pile of clothes a bit nearer.  But it’s not like you can hurriedly shove on your clothes in the middle of such seriousness. That would just add to the awkwardness.  Truth is, you get to be past embarrassment really.  You have to know that medical people don’t see bodies in the way that we do.  They are looking inside at all the blood and guts.  And once someone has seen and felt your boobs, does it really matter how many times they see and feel them?

I get a certain amount of satisfaction from thinking ‘Hehe, Ferdinandos, you are BLOG FODDER and you do not know it lol.’

You can get dressed for the ticking of the boxes.  He ticked normal on quite a few, I am happy to report.  I really deserved an A* for the wiggling fingers test but only got a normal.

I asked for the results of the MRI.  Boob number two is totally alright.  That’s good.  I asked for results of the ECG but they’re not back yet.  I asked them all if they thought the trial was a good thing, (for me, not for the world).  Yes, they all thought it would be beneficial for me.  One benefit I have already seen is that the trial nurse booked today’s nine o’clock appointment for me, as I forgot to do it on the way out last time.  They’re on the case.

Despite having had blood taken already, had to have more taken for the trial.  Other arm.  While I was waiting, I chatted to a couple coming every day from Peterborough for the chap to have his chemo.  They end up waiting for hours, so I found them the leaflet for the Mary Wallace Centre where you can hang out and the chemo people will ring through to tell you it’s time.

On another note, have received two answers (both on postcards) to the question ‘What are tits for?’   One rather clever anonymous diagram portrays protruding tits left with an equally protruding bum right, with the answer ‘a counterbalance!‘  ANON, you score B+ as you can’t draw faces to save your life, but well spotted.

Another has its title at the top:  TITS AND TEETH.

This line at the bottom reads:  AND YOU THOUGHT THEY WERE EYEBALLS.

The other side reads:

You get the elusive A*,  for profound thinking, Fiona.

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The Sad Tale of the Nettle Soup

Well, I had my doubts this morning upon looking into the pan.  The nettles had turned into a horribly dark green wodge floating in a greasy pool.  I put it in the fridge and went out.  At supper time I reheated it and beezed it up.  It started to look a bit better, frothing up a lurid green.  I took it off the heat, took out a hot cupful, added a spoonful of creme fraiche to the cup, stirred it around and poured this back into the soup.  This is to stop the cream from curdling.  I got a bit tired of this method, as you do, and just shoved in a spoonful of cream.  Oh, shizzle on my dizzle, as Alfie would say, it curdled.  Never mind.  Ladled some into a bowl for Alfie.  This is Alfie having his soup.

 

Don’t ask why he has the banana.  We don’t know.

 

 

 

 

 

 

 

 

 

 

Then Tabby came down for her soup.  This is Tabby having her soup.

 

 

 

 

 

 

 

 

 

 

 

Again we tried to make Tabby have some soup.

 

 

We told Alfie and Tabby that nettle soup is very very good for one.  It didn’t seem to help.

 

 

Bashi wisely refused to have any soup.  Following in the footsteps of Augustus Was A Chubby Lad, she cried  ‘Take the nasty soup away, I won’t have nasty soup today!’

The only person who liked the soup was Fred.  Here is Fred having his soup.

 

 

I hated the soup.  Made me gag.  Alfie accurately used two words to describe it.  Disgusting was one of them.  The other was a very rude qualifier.

Still, at least we tried.  I wish my readers better success with their foraging.

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Don’t say this, don’t say that.

I have seen a couple of revealing ‘lists of things one should not say to people with cancer’.  They are written by people with more experience than me, who have understandably heard it all before and become irritated by comments such as ‘You’ll be fine,’ ‘You’ve just got to be positive,’ and ‘if there’s anything I can do….’

Although these lists are probably helpful for carers and others to read, I totally don’t mind if people get any ‘etiquette’ slightly skewed.  I would much rather people came up to me for a chat, any old chat, about treatment, hair, dogs, whatever, than hang back thinking ‘omg, I might say the wrong thing.’  I remember a few years back seeing a fellow Mum from Junior Operatics, Sally, in the street wearing a turban thing, and I did feel awkward and like I didn’t want to say hello because I might blurt out the wrong thing about her hair loss or her illness and also I felt bad because although I had heard she had cancer, I had not turned up at her house with cakes.

I can’t remember this, but Sally assures me that I ran up to her and said ‘Oh, god, Sally, has all your hair fallen out?  That happened to me when I was sixteen!’

The fact that I was in possession of a shock of tangles at the time really helped her, she claims.  I still feel sure that I said the wrong thing, but I am still glad I said something. 

It’s the same with teaching flute.  I am aiming to help my pupils become experimental, functioning players.  I want them to be able to pick up any flute, any piece of music and give it a go. Better to play something than be afraid they will get it wrong.  If you get too hooked on perfection in your way of learning you can get a bit blocked.  Cave men and women were picking up bones in the forest and fashioning them into flutes.  Who are we to impose strict rules upon this ancient pastime and claim that a piece has to be played exactly like this, again and again, the same.  I say, play lots of pieces, duets, trios, different ones every day, some hard, some easy, some made up on the spot.

I have been too busy to blog, because with the absence of symptoms life scooped me up again and I forgot about the cancer for a few days.  However, I rang the trial nurses early in the week to say that I would like to join the Denosumab trial.   On Friday two letters arrived.  The first was from the Department of Nuclear Medicine.  It said that I am going to have a bone scan ‘NM bone whole body‘ on the 3rd of May, 9.30am.  Pictures will be taken three hours after I am injected with a ‘carefully chosen’ radioactive substance .  (I know, I think I had not quite picked this up from the info sheets.)  I should avoid pregnant women and children for 24 hours afterwards.  I looked down the page.  ‘Are nuclear medicine tests dangerous?’  Their answer is ‘No.  Harmful effects are very rare.’  ‘You will receive some radiation which is comparable to some x-rays.  However, to avoid unnecessary exposure to others, where possible you should minimise close contact with small children and pregnant women for the rest of the day.’

Worrying?  Yes, a bit. Images of poor yellow Litvinenko swim to mind. When I told all to the gin group they laughed.  Mad Lucy has spent most of her life working to seek out asbestos, so is probably horribly contaminated herself.  Claire flippantly likened me to the Ready Brek kid, glowing wierdly through the gloom.  But she thinks it’s fine:  the radioactive stuff apparently breaks down quickly.

The other letter was from the CT department saying I was to have an abdomen/thorax scan the same day, but at 6.30 in the evening.  Probably won’t be worth going home in between.  I could visit Gwanny.  Oops no, don’t want to contaminate her.  I could drop in on someone I really don’t like.  Could sit on the river bank and contaminate the ducks.  Or sit in a caff and contaminate unsuspecting coffee drinkers.

Sigh.  I’ll sit in the car.  On my ownio.  Or do yoga on a grass verge somewhere.

Anyway, anti-cancer stuff has as usual been going on. I do yoga in the ponies’ field while the dogs chase rabbits. I am eating ryvita, houmous, tomatoes and seaweed.  Still making soup every day, with miso, shiitake mushrooms, spinach, etc.  My friend Janet said I must make nettle soup as it is bursting with good things.  So I took gardening gloves and scissors on a walk and cut the tops of fresh nettles.  Don’t worry about doing this, just think, ‘little bastards, how often did you sting me when I was little?’  It’s best to find inaccessible, tall ones that won’t have been piddled on by dogs or deer.

To make the soup, first shake the ladybirds off the nettles into the hedge.  The only person I knew who ate ladybirds was my brother Fergus, and it is sadly not advisable to emulate his way of life, although he definitely would have approved of nettle soup.  Wash the nettles and drain them.  The little bastards stung me on the thumb while I was doing this.  Sizzle an onion in olive oil, with garlic if you like it, add a couple of diced potatoes and the nettles.  Stir and cover with nearly boiling water. Add sea salt and pepper.  Simmer gently for about twenty minutes.   Beeze it up in the beezer.  At the end Janet adds creme fraiche.  I will try soya cream.  I made the soup last night and will eat it tonight.  Will post a picture later.

My cousin Kate in Paris says maybe not to go OTT with the diet, as the chap whose diet book I am trying to follow, David Servan-Schrieber, died last year.  However, he first discovered his brain tumour when he was thirty one, and died aged fifty, so he did manage to hold it at bay for nearly twenty years.  Without the diet he might have died after five, who knows?  He thought that playing in pesticide-sprayed corn fields from the age of about two til nine gave him and his two cousins their cancers.

I have discovered a new site, called NHS predict.  You type in what you’ve got, like Invasive Ductal Carcinoma or whatever, with a few details like your age and the grade of cancer, whether it’s HER2+ or not etc and they predict how likely you are to survive.  Quite interesting really.  With chemotherapy, hormone therapy and Herceptin in addition to surgery, ninety three percent of women with my illness should still be around after ten years.  They don’t say for fifteen or twenty years.

Today I am going to a ‘Face Forward’ session at the Mary Wallace Centre.  It’s to help people with issues surrounding hair loss.  I have no idea what it will be like but I suspect it will be fun.  Will report on this later.

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Eddie, Patsy and the Probe

So, as you can see, we had fun being Eddie and Patsy darling.  Caz had especial fun, as she has borrowed a car from the garage which is manual.  Not having driven a manual for many years, she had more than a few stalling episodes coming over here, and with her blond beehive and sunglasses experienced what can only be described as serious prejudice from the road rage guys behind her.

My mum says if I do a fundraiser she’ll never speak to me again.  (*Whisper*  just so everyone knows, the fundraiser is being driven underground to fb.)  Don’t tell Gwanny.  She wants me to conserve my energy.  Which is what I am going to do, Gwanny.

Reminds me of many occasions where we had to keep things quiet.  For example, when we got the ponies.  Don’t tell Gwanny.  When the cat got pregnant.  Don’t tell Gwanny.  Also, don’t tell Fred.  For some reason, we don’t know why, Fred does not want any more animals.   He did accept the pony thing once we had explained that if the world ran out of fuel we would be the only people who would be able to get anywhere.  Who wouldn’t like that idea?   However, when Oddly and then Treacle (dogs both) were pregnant he just thought they had the most dreadful constipation.  And when he finally accepted Sid the cat’s condition, (complicated brain work as we had all believed Sid was a boy, and his sister Nancy a girl) he went off to work with the following words:  ‘I don’t mind, so long as it doesn’t have them in my sock box.’  Yes, of course, she did.  It took him many years to recover from that experience.

He quite liked the baby tortoises, Twist and Turbulence.  But it was not to be.  Someone had off-loaded them on us (thanks Ali!) and we equally gave them to a more suitable tortoise-mad home, once we discovered they had an uncanny knack of sprinting off never to be seen again, prompting desperate two-day-long rummages through undergrowth to find them stuck half buried under a fence.

So, alas, back to the subject of the moment.  I went for my Echo cardiogram.  The entire thing was done by a student.  A young lass who laughed lots.  Her supervisor talked her through the whole process.  They were both tiny, skinny people. ( And me like a beached whale on the slab.)  They started probing away slightly to the left of the breast bone.  It soon became apparent that the harder the probing, the better images they were getting.  Painful.   You lie on your side, facing away from the machine, so you can’t see the images and you are definitely not in on the jokes.  They hooted about red and blue imaging: BART Simpson, said the supervisor.  Blue Away Red To.  Doesn’t sound right to me but what do I know?  I just looked it up.  Red blood comes from the lungs to the heart and goes off round the body, comes back blue, goes through the heart and back to the lungs.  So I don’t know what ‘Blue Away Red To’ can be referring to as both red and blue blood is coming to the heart.  Maybe they use red and blue just in the imaging to confuse the students.

The student’s right arm started shaking from fatigue after about twenty minutes of holding the probe, and her hand got cramp.  She wasn’t allowed to stop though. With her left hand she was doing all the tapping on the computer.  They giggled through angling the probe, keeping it horizontal, the cursor, measurements, the aorta, valves, reflux (don’t like the sound of that last one).   Not having been able to see the screen, I can’t comment really.  TBH probably wouldn’t be able to comment if I had been able to see the screen, although can’t help thinking a few visuals to accompany the soundtrack would have been entertaining.

Whenever the supervisor seized the probe there was an instantly more reassuring, knowing angle to it.  They ask you to turn more onto your back and they get images from your side, through the left ribs, then they have a go from the front, probing away beneath the breast bone.  It would probably help them see better if you were a thin person but I can imagine it would also be more painful.  I forgot to ask them how my heart was but at least I registered no exclamations of horror,  like ‘oh shit the blood’s going the wrong way!’ type thing, nor any awkward silences which could have indicated them raising eyebrows behind my back like ‘oh god, and she thinks she’s going to live, the deluded fool’.

At the end the student sat rubbing and shaking her hand.  ‘Haha, my first full scan’ she laughed.  ‘Can’t believe I managed the whole thing.’  I felt happy to have provided my heart for her training.

I have been considering the trial.  My vet (I know, I ask all the best placed people) said she would be inclined to do it, as the level of interested supervision you receive would be high.  If I had cancer or anything else lurking anywhere else in my body it would very likely come to light with all the extra tests and scans they do.  So during the next five years I would be as safe as you can be from a diagnostic point of view, but then you do have to take the drug ( if you are not in the placebo group) which would have inevitable side-effects in addition to the possible fab effect which would be stopping the cancer going to your bones.  If you get bad side-effects you can opt to stop the drug.  All quite complicated.  If anyone has any ideas one way or the other please comment, or message, as I haven’t decided yet.  My instinct is to help the development of medicine and join the trial.

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Serious knickers

My friend Barney says that he used to think I was the maddest person he knew.  Now he thinks I am the sanest person he knows.  Wow.  To go from maddest to sanest is quite something.  And I didn’t even change.  Maybe I was the sanest all along.  Or maybe the people he knew got madder.  Either way, I’m chuffed.

Today I forgot about the whole damn business.  I put on the new red hair thing, went to London and watched Noises Off for the second time with my dad,  Alfie, Bashi, Tabby and Elliot.  I only got a few looks on the tube when I apparently shouted to Tabby ‘It’s nice not to be bald for a change.’  Damn.  Blew my own cover.   The play reduced us all to helpless snorting, especially the backstage act in the middle.  We had lunch in a tapas bar (couscous salad) and a cream tea in the Waldorf Hotel after.  Must admit, had one scone with thin jam and thin cream but much anti-carcinogenic Earl Grey.  They have the most fab little drip-catchers on their tea strainers.  Most civilised.

It is good to be so stimulated and excited that you really forget that you have all this burden of stuff going on.  Reminds me to get on and organise the fundraiser for ‘Make a Wish’.  My friend Janet’s daughter Andi wants to help as she accompanied her ill cousin on the Harry Potter trip and knows first hand how incredible the whole thing is.  We need a date, a projector, a screen, a bar (donations) and two sittingsworth of audience.

I am going to another fundraiser.  My friend Gill has invited me to a fashion show at Manor of Groves (a posh local hotel). It’s in aid of the Epping Breast Unit’s charity called Fabulous and Beautiful which helps people through the psychological effects of mastectomy and chemo. All the models have had breast cancer. Gill is one of them.  It’s the night before next chemo so I should be at a peak of health.  I want to talk to all the ladies and study all the head gear.  I have never been to a fashion show in my life, so am interested to see what it’s like.  Do you think there will be gin?

Lots of curious peeps have asked about the mouse and the bollocks.  I will just say, for the good of humankind, that Fred would probably (if he knew about all this) want to share with the world this one piece of advice:  if you want to catch a rather aggressive, jumpy mouse, do not attempt it crouching down clothed only in your dressing gown.  Serious knickers are required.  I bet Fred still wishes he’d been wearing serious knickers.

Reminds me of something really awful that happened to Alfie when he was in Reception.  He suddenly realised that he had nothing on under his trousers.  This would not have been a problem but he knew it was football after school.  He bravely yet oh so foolishly put up his hand and said ‘I’ve got no knickers on.’  Of course everyone in the class laughed and laughed.  And laughed.   Thing is though, having two older sisters, we hadn’t really thought to tell him that boys had a different word for their knickers.  Blates Fred’s fault I would say.

Absence of symptoms means there is not much more to say.  Although, all you non-ill peeps out there, Enjoy Your Strength.  We take it so much for granted.  The other day I carried a laptop the length of the corridor (admittedly quite far, our house being very long and thin) and from about halfway the laptop seemed heavier and heavier until it felt like a massive lump of concrete.  I put it down on the kitchen table panting with exertion.  Not normal.

Eddie and Patsy photo shoot on the way so stay tuned!

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Parrot Mail and the Tim Minchin look

Sorry, my blogging has been slightly held up by my discovery of about a thousand other breast cancer blogs online.  I love them.  Some are very sad.  Often you become so absorbed in the story of a wonderfully feisty funny woman and you suddenly realise that she just isn’t going to make it.  You start to worry when people are peppering their posts with references to ‘my mets’ which you soon find out means cancer which has metastasized to lungs or liver.

Everyone always is keen to know the prognosis though.  That’s the key thing.  Are we talking ‘on the way out’ or not?  I guess all cancer is dangerous on that front.  But, if the worst comes to the worst, there are alternative ways to look at life where length of life is not being hailed as the most important thing.

Reminds me of a story.  JeanDavidJimmyKayMegBobbyLinty’s mother Peggy used to buy pegs every year from the gypsies who would pass by.  One year a girl of about twelve was bouncing a baby on her hip as she sold the pegs.  ‘Can you spare a wee bit o butter for the baby’s bottom?’  she asked.

The next year the girl came by again. Peggy asked her ‘And how is the wee baby?’

‘Oh’, said the girl, ”E was a piner, so me faither slew ‘im.’

Make what you will of that.

All symptoms have disappeared since I took Carcinosen 200 one last time at 10pm last night as oncoming foot pains were starting to make me writhe around.  Even as the remedy was still under my tongue the pains wilted away and died.  I’m impressed.

The upshot of this is I am free to talk about other things, wahey.

In the same way that the youf find it a steep learning curve to use snail mail, the older generation find it a big shift to use email.  Love the way my mum puts ‘the man over the way has terrible piles.  LOL.’ (How does she know, we ask ourselves?  Don’t know, it must be in the way he walks.)  (And she doesn’t mean LOL you understand, it’s just that she uses WTF, ATM and TBH quite randomly as well.) Now, I have been studying communication a lot recently.  The Macmillan cancer information site is throbbing with people blogging away asking each other everything, sharing experiences, supporting each other.  Post a question and you can have six or so replies in your inbox from people with the same diagnosis, the same op, the same stage, within about an hour.  It’s an organic speedy interchange.

However if you prefer a slower but seriously satisfying type of message-relaying, you could try this one:  one day a few years back I had struggled through getting everyone up, breakfast, the school run, two different schools, dog walk and had just got in, put the kettle on and sat down with a piece of toast and peanut butter, when one of the parrots, Torro, looked at me and said ‘Time to Tidy Up.’

I choked on my toast.  ‘What?’ I spluttered.

‘Time to Tidy Up,’ he said.

Rather ambitious of Fred to imagine he had sussed a way to wield control at home even whilst away in the big city.   I had to admit I was impressed at his vision.  The beauty of it was that I had not heard Fred training the parrots to say this, and I know it takes a couple of weeks to train them to say a new phrase.  He must have been conducting secret sessions in the early morning when he made the tea.

In scenes reminiscent of Roald Dalh’s The Twits, I was already formulating my revenge.  Fred never suspected anything when I started getting up early to make the tea because he had coincidentally just stopped work for the first time in fifteen or so years, to take a few months off  between jobs.  One morning a couple of weeks later he sat down with the crossword, a nice cup of tea and a sigh of satisfaction.  The parrot fixed him with one baleful eye and said ‘Get a Joooob, Fred, Get a Joooooob.’

Our other parrot, Kiki, an altogether more tender creature, put the nail in the coffin with her little chuckle and pitying echo, ‘Just Get a Job, Fred.’

Haha, big LOLS.

Now the parrots have got us both back.  One of them does the phone noise.  The other answers: ‘Yes, Hello?’ in Fred’s voice  and carries on, ‘Yes..Hi… OK, I’ll just get her….HESTER!’

The other one screeches ‘WOT?  WOT?’

We once got back from holiday and said goodbye to Granny and Grampa who had been looking after the house, sat down to have a cup of tea, and the parrots started up, didn’t they.  ‘Och, Grampa, look at this!  Disgusting!….Och, Grampa…och, disgusting.’  Turned out Granny had cleaned out the cupboards opposite their cage.  They were on a loop for about a week.

Ahhh, we do laugh.

More news:  I have a new wig/hair thing.  My friend Mary beat me to the Hair to Ware shop and turned up with it. It’s highly wacky, makes me look like Tim Minchin.

Hooray.  Now I am well placed to take him on.  I have wanted to do this ever since I saw ‘Storm’.   It is very funny and he is a genius but I find him just a bit too rude and smug about homeopathy.  You should probably have a little look at Storm if you don’t know it.  Just type Tim Minchin Storm into Youtube.  (It’s eight minutes long but you will probably enjoy it!)

Tim is like Fred  in that he likes to rely on science.  However even Fred has learnt from experience of other worlds.  For example, one summer when the kiddies were babies Fred put his foot into a wellie boot with a bumble bee in it, and got stung.  He was hopping about in agony when a French friend staying with us promptly got out his homeopathic kit and gave Fred Apis.  The pain stopped. Er, no Tim, normally the Pain Does Not Stop.  Fred has experienced bee-boot (and even mouse-boot) scenarios many times before and after where the Pain Does Not Stop.  (BTW please don’t ask Fred about the terrifying mouse-bollock scenario, it will do his head in and The Pain Never Stops.)

Now with this cancer thing so far, I have learnt that the only thing that reliably stops the foot pain, shivers, joint pain and fever (apart from above the recommended dose of codeine along with forbidden neurofen) has been a homeopathic remedy.  And I’m blowed if I’m going to let some scientific chap, however funny and good at songs he is, tell me that I am having the placebo effect, when I don’t believe he has ever tried a homeopathic remedy.  And I believe that if you have not tried it, you can’t comment.  I think that a true scientific approach would involve trying it lots of times, Tim.  And documenting your results.  I am doing just that.  And I’m not knocking chemo either, before you slag me off as some Storm-type of girl who won’t give allopathic medicines their due.  So anyway, I’m going to do a song next as a response to Storm.  Come on everyone, in the style of Tim Minchin and for Tim Minchin, a song starting off with how we were all chilling round a fire at a festival one night and met a strange allopathic man from Scienceworld, leading on to the wonders of homeopathy and how it Jolly Well Takes The Pain Away and how if we had lots of money to run real trials we would just to prove it to certain stubborn peeps who refuse to try things because they anally require proof first.  God, I probably am ‘so open-minded my brain will fall out’, (one of Tim’s jokes) but at least I won’t suffer pain while it happens for I will have had my Carcinosen.

Rant over.

ps. peeps are welcome to come and give parrot mail a go, but the deal is, they must do the early morning tea.

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Pointless Pricks

The steroids wore off during Saturday.  Still felt kind of normal.  Managed to drive and buy horse food and do the ponies on my own.  Shopped, cooked.  Took the dogs out with Alfie and Tabby.  By Sunday though things had changed.  It seems horribly self-indulgent but  I did nothing but eat and sleep.  Muesli and fruit, back to bed.  Did ponies with Fred’s help. Overriding feeling of weakness with stabbing pains in the legs.   Grilled tomatoes, wild rice, courgettes and green beans, back to bed.  Wholemeal pasta and shiitake mushrooms, didn’t even get out of bed for that one.

Slept all night, then woke at six.  Shaky and stiff, made it into bathroom and before I knew it just toppled over and found myself on the floor, weakly scrabbling about like a dying rabbit.  Felt very shivery and odd.

Fred helped me back to bed.  Had some codeine.  I realise we should have taken temperature at that point but didn’t think of it.  Couldn’t eat but drank tea.  Fred drove me to the ponies later.  We did the minimum, food, water, hay.  Fred even brushed them a bit.  Well done Fred.  He does call Princey Ponce though which is annoying as Prince is far from a poncey chap.

Went back to bed for an hour, took codeine at 11.30 and then went out for lunch at 12.30.  Lovely people and conversation and food and the codeine kept all at bay for three hours.

Back in bed trying to control the shivers remembered to take temp.  It was 38.5.  Oops.  It says on my sheet ‘If your temperature is 38.5 phone the hospital immediately because of the risk of infection.’  We took it again after an hour.  It was the same so we did phone the hosp.  They said to take it again in an hour. (I know, we’re always ahead of them!)  If it was the same again I might have to go in to be assessed.  This was eight pm Easter Monday. The thought of driving to Addenbrooke’s, parking, walking, being assessed (we all know what that means: needles and more needles)….all a big urgh.  What could I do to bring the temp down?

‘Fred, I’ll take my remedy.  Carcinosen 200, this’ll bring it down.’

‘You do that, dear,’ said Fred, a tad condescendingly.  He pities people who have blind faith in things.

After an hour the temperature was 38.2 and after another hour 38.0.  At midnight it was 37.7.  Now it is 37.2.

Haha, saved from a night of pointless pricks. (I mean the needle variety not any other variety.)

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Ben and Tracy’s cards and our Dot Cotton moment

Ben, who is undoubtedly younger generation, phoned up proudly to say that he had put a card in the post.  Despite being a whizz with uploading and stuff, he had had to ask the people in the post office what to do.  They said, you buy a stamp and stick it there.  Then you put it in the box.  ‘How much is a stamp?’  he asked.  ‘Forty p’ they said.  ‘OK’ he said.  Hooray, my blog has succeeded in educating the youf in one small department.  This is the card:

Ben described it thus:  ‘Look!  It even has a parrot, Whisky (a larger version!), flute players, Alfie on the right having a cheeky puff, Bashi on the far right looking bewildered and Big Alf in the background on the left looking blissfully content!  I imagine you as the vivacious mother on the left being fed grapefruits, grapes and oysters, being handed a glass of vino and listening to your pupil’s ambitious flute playing (‘cack-handed’ if I remember correctly…)  And LOOK!  the man in the middle has found Bashi’s lost piano music after the big de-clutter!’

Well done Ben. B+ today. (you are marked down because it’s a bagpipe player, not a flute player. But I must say, the likeness to Big Alf top left is pretty good.)

This is another very big lols card I got for my birthday from my pupil Tracy.

Well done Tracy you get an A. For pure aptness.  And the perfect likeness to me.

Will give you one last photo today: Claire and I experimenting with headscarf looks hit upon a Dot Cotton moment. (FAKE fags, don’t wuz! would be a bit daft to take up smoking at this stage…)

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