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Tuesday, 30 July 2013

Mental Health Guidelines Survey - please take part.

http://www.b-eat.co.uk/support-us/get-involved/research/refreshing-the-nhs-mandate/

Well done to Beat for getting things moving with regard to this consultation.  I ranted in my answers, including terms such as evidence base and early intervention.

My coup de grace was to point out to the Idiots at the Ministry of Magical Thinking (a.k.a. The Department of Health) that, just because you can't "see" mental health problems, does not mean they are not as damaging as a broken leg.  If not more so.

Encouraging the MoMT to actually grasp that mental health issues are not going to go away and that short-term spending money on them, will mostly give long term benefits and reduce the burden on the NHS, is a GOOD thing, people.

It is also immensely satisfying to point out that the MoMT is mostly peopled by ostriches.  Hoping that mental health problems will resolve themselves, that patients will "want to get better" and magically cure themselves or, in the case of children and young people, will "grow out of it" is not borne out by experience....

Just saying.

My kind of people

I got weighed and swabbed yesterday as part of my oncology check-up.  What I like about oncology is you get congratulated for not losing weight.  Losing weight is a No No and a Worrying Sign, as far as they are concerned.

There is another little corner of the universe that thinks like me.  I almost shook the nurse's hand saying "Dr Livingstone, I presume."

Picture of the day from the wonderful Carrie Arnold - highly relevant......



(P.S. Sadly, I didn't take a picture of Tim's tight white trousers and Ferrari red golfing jacket yesterday but HWISO and he enjoyed themselves so much, they are going to go again.  So, Cousin Emma, promise I will capture this moment of glory for you......)

Monday, 29 July 2013

Ouch

So I had a normal oncology appointment this morning.  Well, not quite normal.  My normal nurse, Helen, is on holiday so I had Alison - she's lovely too.  Dr W is on holiday so I had Dr M instead.  The last time I had a chat with her was in a room at the Hospice, with darling Sophie, trying to sort out medication for her.  It was a fraught and traumatic time for everyone.  

Dr M took one look at my shoulder which had swelled up again and immediately set in process another aspiration.  Bless her.  Went round to the Breast Imaging department and had the same lovely radiologist as last Thursday.  I am now able to lift my right arm up and the tension on the tendon has been hugely decreased.  I was getting a very sore armpit from the rubbing and that has eased considerably as well.  It is hoped that the next lot of chemo (Friday) will help too.

However nice the staff are, it doesn't make the local anawhatsit needle any less painful though.  But it is done now.  Another 100ml of bleuch.  When the anawhatsit wears off, it will be spiky pain for a while. I wish there was some painkiller between Ibruprofen and Morphine that I could take, without catastrophic side effects - either breathlessness and flu like symptoms or St Vitus dance have been the effects of Codeine so far, so best to avoid them.

Tim has taken HWISO off to teach him how to play golf this afternoon, as rain has stopped combine play.  They said they would be back much later with fish and chips.  Tim had on an outfit that is more than acceptable in Italy, where the line between well-dressed and overtly gay is less well defined.  I'm not sure that Stowmarket Golf Club is quite ready for him.....

The two angels have stopped fighting and gone off to Southwold to stay with one of the mermaids so I am looking forward to a peaceful afternoon.

I hate cancer today.  Just saying.

Sunday, 28 July 2013

My new crush.


Anyone who can write a book entitled Genome and make it really interesting gets my cerebral vote.

I have to quote one part of a paragraph, that had me cheering from the rooftops.

"But no gene is an island.  Each one exists as part of an enormous confederation called the body.  It is time to put the organism back together again.  It is time to visit a much more social gene, a gene whose whole function is to integrate some of the many different functions of the body, and a gene whose existence gives the lie to the mind-body dualism that plagues our mental image of the human person.  The brain, the body and the genome are locked, all three, in a dance.  The genome is as much under the control of the other two as they are controlled by it.  That is partly why genetic determination is such a myth.  The switching on and off of human genes can be influenced by conscious or unconscious external action."

(Matt Ridley, GENOME, The Autobiography of a Species, Fourth Estate)

This book was published in 2000 and is still recommended reading for Biology students.  It is also science for Idiots (like me!) - he does great analogies.

His explanations of how biology underpins the most basic of things but the interaction with the environment can unconsciously turn on genes that can run amok, makes much more sense than blaming your parents for your cancer/eating disorder/eye colour/shape of nose/ etc etc etc.

"It underscores yet again the fact that what we call personality is to a considerable degree a question of brain chemistry.  There are a score of different ways in which one chemical, serotonin, can be related to innate differences in personality.  These are overlaid on the score of the different ways that the mind's serotonin system responds to outside influences such as social signals.  This is the reality of genes and the environment: a maze of complication interactions between them, not one-directional determination"

(Matt Ridley, GENOME, The Autobiography of a Species, Fourth Estate)

This makes much more sense than this:

Guided imagery was my first specialty. This study still teaches me about symbols and how we can use a disguised language to work through problems we will not let ourselves know concretely. Dream analysis became part of this study.

This led me to 12 step programs and psychoanalysis simultaneously as I studied the grip of addiction and the power of memory, distorted memory and lack of memory. I also saw how a cognitive behavioral approach could be integrated into unconscious work and make the therapeutic experience more effective.

(Joanna Poppink, Healing your Hungry Heart, 2011)


The Parent Trap

Us middle agies were sitting round the dinner table last night chatting about how much more our children have in the "entertainment" area of their lives than we did when we were teenagers.  Computers, all day TV, phones, easier travel, more compliant parents....

Exactly the same conversation that my parents had with me when I was a teenager, my mother having brought up during the war, when there were no bananas, a constant threat from the skies and no entertainment of any kind.

What became apparent to us all was that the aching boredom, along with the idea that everyone else they know is having a much better time than they are and that their home/parents/life is just so boring/turgid/useless when compared to their peers, is a universal teen thing.  Whatever we try to do to alleviate the boredom or to make our children's lives less anxious and stressy and boring and horrid than our teenage years were, is not going to work.

Because aching boredom is teenage life.  It passes.  Life gets better.  It is just a phase.  Not a helpful thing to say, but the truth nonetheless.

If only they were dogs, they would be happy as Larry in a pond with a ball for hours and hours.  Sigh.

Trouble.....

Happy families


So I took the idiot brother to the local bike shop to get proper jeans for his new motorbike riding/definitely not a mid-life crisis phase.  The bleuch on his ankle is actually quite stomach turning, three weeks on so he needs proper protection.  The young man (why is the world populated by knowledgeable teenagers these days?  Doctors, policemen and now cool kids in bike shops?) who helped us was divine and even got most of our jokes.  He laughed when Tim said that his "dropped" bike was not "damaged" but had "sustained modifications to the tank".....

The t-shirt Tim is wearing is one that Mum gave to all three men (HWISO, Tim and other brother Michael) for Christmas.  It shows the shipping forecast areas on it.  This means much of the day is taken up with intoning "Dogger, Fisher, German Bite, North to North-west, 5, moderate or good".

E and G are "not getting on" just now.  This is tiring for everyone.  Having Tim here is helping a lot.  He does not get "triggered" by the same "nip nip" scenarios as HWISO and I and is able to offer a bird's eye view and some calm.  Bless him.

Yesterday was made mouldy by the fact I had taken piriton (which just makes me sleepy but seems to not have much effect on the allergies) the night before, alongside a co-codamol, which I had forgotten just makes me feel rotten, breathless, tired and doesn't seem to help with the pain.  The pain after the aspiration was terrible and the aspiration doesn't seem to have worked.  Darn.

It was filled with joy with a quick visit from Lickey - yes, that is what everyone calls her, a dear old friend, who is witty, amusing and impossibly glamorous.  She is also married to one of the world's best photographers so gets to visit some really cool places on assignments.

We have talked a lot about raising teenagers.  Tim has 13 3/4 year old triplets.   I have a 16 and a 17 year old.  I think he looks with horror at what is coming, sometimes.  It is weird being the youngest child who had the grandchildren first.  I freely admit to being crap at this teenage thing sometimes.  I just want everyone to be happy and that seems impossible.  HWISO and I are pretty united in our toleration levels and pretty laid back but there are some limits and some lines not crossable.  The girls seem to enjoy finding out our tolerance limits and then making us feel guilty.  I know we are not alone.....

I have also received great advice from one of Mum's Mermaids this morning.  It is so lovely that the friendship bonds tied by mother span across three generations.

So the plans for today are fluid, excepting Tim and I are going to attempt to butterfly a leg of lamb for the barbie.  


Saturday, 27 July 2013

Reflections

We had the best night evah in Norfolk with Matt and Jane - hilarious, loving and so relaxing.  I love the skies in Norfolk and found myself humming "Don't fence me in".  The food was unbelievable.  Really. We also chose the "wine flight" which was were the sommelier (who was about 15, like all those doctors and policemen these days) recommended and came to tell us about.  

I have known Matt for so long that I know when he talks about going "for a walk", he really means going for 5 miles at a fast trot, so I declined to go further than the Quay and watch the boats being launched to catch the tide, yesterday morning.

Back home, through dreadful traffic, a brief hour's sleep and then setting off to Stansted to pick up my big bruvver.  What I love most about Tim is his ability to "take the piss" out of us all and diffuse a teenage slanging match by accurately copying the exact tone and pitch of the voice, so we all end up crying with laughter.

He is also brilliant at computers, erudite and never loses the argument.

My joy was him threatening to "wake up" the girls this morning with a cup of tea and his rendition of Michael Jacksons "Don't stop till you get enough" because Em likes the "Woo" at the beginning.  This was after we thought of making a video entitled "99 ways to say Teenager" having watched this.  

I suspect the next couple of weeks are going to be full of laughter and really stupid ideas.  Poor HWISO may miss out as the combine started rolling yesterday, three weeks late.




Pic of the wonderful Livs Wright with our combine last year.  

Friday, 26 July 2013

Sharing

Lying propped up on pillows in probably the nicest hotel I have stayed in, I am remembering why I married HWISO.  During up to North Norfolk in companionable rivalry about who knew the most about trees whilst driving through Thetford Forest and admiring the countryside and criticising the farming. Getting to Morston Hall despite the satnav loosing the way just outside Fakenham and me not having been here for about 30 years still remembering to go through Stiffkey and Morston was the next village.

We had a hilarious night last with Matt and Janie.  I laughed til I cried whilst eating the most amazing food and drinking the most amazing wines in the company of good friends.  I must admit to retiring to bed when the third sambucca was ordered, having heard enough about Matt's bowels and growths.  

I also remember why I don't share bedrooms with HWISO. I really wouldn't mind his snoring if a) he snored rhythmically or b) quietly.  It is the intermittent ear splitters I can't take.

Bless. 

Thursday, 25 July 2013

Ups and Downs

So Laura Collins and I (along with some seriously cool clinicians) are about to break some serious rocking news.  BUT, it means that I have to get on Skype at the same time as these other people and chat about what's what and how, when and wherefore.

The downside is that I really need an aspiration on my shoulder which is becoming seriously painful.  These aspirations (of which I have had about 25) are seriously traumatic.  I have to lie on a bed topless - that doesn't bother me.  All dignity about me udders has long gone.  Then I have ultrasound to see where the fluid build up is.  This entails pressing down REALLY hard on a bruised and sore shoulder and then a local anawhatsit (which hurts).  A long (really long) thin spinal needle is then put in the fluid drained off.  All this can take up to an hour to do, depending on how many pockets of fluid there are.

When I come out of there, I feel wrung out and relieved, albeit temporarily.

The problem is that we are being taken here for an evening away from the stresses and strains of everyday "looking after teenagers" this evening.  Both HWISO and I were hoping to go up early, have a swim in the sea, a late afternoon nap and a blissful evening.  However, I have to wait to see what time they can aspirate me.

This see-saw is making me feel quite dizzy and I now want to retire to bed, leaving everyone else to sort it out.  HWISO has gone out to do "farm" things, although we are still not harvesting and the girls are asleep, so I guess it is up to me to man the phones and sort things out.

This is awful.  Truly awful.  Worse than worse and don't try to tell me that it has not been photoshopped because it obviously has.  You only have to look at the girl on the left's arm and hand.....

WTF does this convey to you?

To me, it is a mixed message of misery for anyone suffering from an eating disorder.  To me, it reeks of pink tutued people skydiving - because that cures Breast Cancer right?

Sigh


Wednesday, 24 July 2013

On a lighter note

G "borrowed" my phone on the way back from Latitude to catch up with all her mates.  Her Twitter account is logged in on my phone and, consequently, it buzzes all day long with various weird messages from Twitter.

"So the royal baby has been born and its a boy.

However, the aussies are going to waste another review and see if its actually out."
(Cricket reference for my overseas readers - and a good one!)

My twit feed is infinitely more boring and less witty

"Detroit retirees are on edge"

I did tweet (as her) yesterday, that she was an idiot for leaving my phone logged into her account.  She deleted the twit but has still left me logged in.  Moral dilemma of the day - do I read the stuff that she and others are tweeting or ignore it?

Picture of the day from the fabulous House of Mutt - hot desking? sleeping on the job?





Living in a shadow

So the lovely other Debs came to see me yesterday for coffee. She was diagnosed and went through treatment before me and, being hormone receptive, is on a load of pills that have terrible side effects.  She is desperate to come off them because a) she has been on them for 5 years and b) the side effects are making her life hell.

Interesting one oncologist has told her she can and another that she mustn't.  The statistics are that nearly a quarter of women diagnosed with breast cancer will die within 10 years.  That's one in four (ish) and the figure is rising. 

We talked about our daughters and how to help them.  We talked about genes and clinical trials and prevention.  We discussed how breast cancer is killing more women, now that things like diptheria and tuberculosis are out of the equation, in the main.  

We didn't talk about the fear.  We didn't need to.  For me, the fear is over, replaced by certainty.  For Debs, it is there, underlying all she does.

So she will stay on the pills, she says.  Good, I say.  The unspoken passes between us without need for articulation.

Tuesday, 23 July 2013

Unashamedly

Royalist, as I am, I delighted to hear the news of another Royal baby.

Am I disappointed that it's not a girl?  On a post-feminist, modernist level, yes I am.  Britain has always done rather well, with Queens (excepting Mary) and another long-reigning Victoria or Elizabeth would have made me happy.

But when HWISO asked me this question this morning, my first response was that I didn't care as long as the baby and the mum were healthy.  

I don't envy the life of this baby one little bit.  Financial security doesn't make up for a life in the spotlight and the lack of choice about a career.  

I am also pleased that it appears that Kate and William are going back to her mother for a while.  Just how it should be.

I am also thrilled that no Cabinet Minister had to be present at the birth.  Nothing worth than making small talk with George Osbourne, David Cameron and Nick Clegg, whilst sweating and pushing.

(I can hear OMM gnashing her teeth from here, BTW.  Stop it, woman.  No principle is worth your teeth enamel.....)

I don't envy the residents of Buckleberry though....

Monday, 22 July 2013

The nicest woman in the world

according to HWISO, came to tea yesterday.  This is a title she briefly lost when she gave ME (please note, family, ME, not the rest of you), Pirate.  He was a very naughty sharp toothed disobedient terrier pup.

TNWITW bought her lovely husband, an old school friend of mine, with her, along with her 8 year d, who stayed in the pool for two hours.  Bless.  Pirate was SO pleased to see AJ and Debs that he actually smiled....

This morning I have spent in the car trying to find G at the Latitude Festival.  I eventually got my little girl, covered in dust and rave paint, fed and watered and then home for a bath.  I expect we will see her sometime tomorrow morning.

The lovely Helen rang to say No Chemo This Week.  Something to do with leaving two weeks between the treatment.  I am still quaffing the antibiotics and feeling a lot better.  They make me sleep well too.  However, last night I had the pleasure of Uhu in my room.  Not quite sure a) how he got there; and b) when he arrived, but I awoke to find Em trying to coax him off the snuggly sheepskin rug by my bed and back downstairs.  I was pretty sleepy so I said to leave him.  I do wish I hadn't.  Male labradors fart and snore in a particularly loud way, alongside shuffling around to find a more comfortable position and licking their bits because they can ALL NIGHT LONG.

I woke from a dream about being trapped in a sewer this morning, to find myself eyeballing a black lab, who was (literally!) panting to be let out.  Eww - he really needs a doggy dentist.

I was most flattered when another blogger blogged the T-Shirt.  FTR, I am more than happy to share it around.  The more smiles it brings, the better.

I am intending to spend some time this afternoon working out whether my hair is growing back or it is just a patch that HWISO sheered very short, when he "tidied up" my hair.  I was amused to note that AJ (he of the luscious black curls when we were 17), also gets Einstein hair when rubbed vigorously with a towel.  We were like two Jack Nicholsons at the table....


UHU of the Very Bad Breath

Sunday, 21 July 2013

Ranting over

and back into the humdrum daily life blogs.

HWISO is "recovering" from his day at the cricket yesterday, which he loved.  I think he was a little disappointed that Em and I hadn't spent all day glued to the TV, trying to spot him in the crowd.  We did more important things like buy food and go for a driving lesson.

The driving lesson was actually low-stress for me, until Em started pointing out the "hot boy in the maroon shirt" as we were careering down a street full of parked cars and pedestrians.  

When the sun comes out again, I shall revert to my "doing everything the doctor says No to" regime but for the moment, I shall concentrate on office work and insurance claims.

We have been inundated with people who "want to see you" these past few weeks.  I remain delighted that people want to see me and it has been a joy to catch up with old friends.  However, I am not entirely sure whose is benefitting.  Do people want to see me because they are curious?  Because they feel they will find some deep inner peace because they have actually laid eyes on me?  Do they feel they are sociably obliged to see me in the flesh?  Is there some guilt that they haven't seen me recently? Is it ghoulish curiosity to see what someone dying of cancer looks like?

All these thoughts have crossed my mind.  

However, I am choosing to believe that they are coming in droves to support my family and to let HWISO and the girls know that, fond of me as they are, they are actually wanting to do something for the family.  And that cheers me.

I have enjoyed a massive boost to my social life.  I hope that when I am dead, people will continue to pop over in droves and include the family in a whirl of social activity and talk about me.  I feel it is very important to share memories with bereaved families, to not avoid the subject of the dead person.  I also think that other people's memories and stories are an important part of filling in the gaps for the girls and the opportunity to make HWISO laugh at my more daft exploits.   His tendency to shrineage and cannonisation could become out of hand, so he will need plenty of gentle reminders that I was not perfect, but always funny. 

Not that I am telling you all how to behave or anything.  Merely pointing out that someone dying does not mean that they should be forgotten or hidden.  Death is only final for the person dying, not for those left behind.


Fat

I do admit to producing a smug smile when people start boring on about their diet or how wonderful it is that they have lost weight and how proud they are of it - and, yes, you serial dieters are not only immensely boring, you are also really rather stupid.  Hence the blog yesterday.

"Healthy eating won't make you live longer. It'll just feel like it!"

I did laugh at this - thanks Ian.  But it got me thinking.  What do people think "healthy eating" is?

When in doubt, Google.

The website I picked for "healthy eating" is NHS Choices because I know that it is subject to rigorous inspecting, detailed planning and is not allowed to put stuff up that is not evidence-based.  Sigh, the first thing is does is talk about calories.  

Eat the right number of calories for how active you are, so that you balance the energy you consume with the energy you use. If you eat or drink too much, you’ll put on weight. If you eat and drink too little, you’ll lose weight. The average man needs around 2,500 calories a day (10,500 kilojoules). The average woman needs 2,000 calories (8,400 kilojoules).

So, the average man (5ft 9 in the UK) should eat 2,500 calories a day whilst doing 30 minutes of exercise per day and the average woman (5ft 4) should eat 2,000 calories a day whilst doing the same amount of exercise, in order to be healthy.

Can you see where I am going with this?

Firstly, what if you are not average?  If you are over-average, what should you do?  Should you eat more AND do more exercise?  Should you do the same amount of exercise?  If you are under-average, should you eat less?  What about the exercise?  Arghhh.  Already I am confused and I know quite a lot about calories and nutrition.

Then, we move on to how you "eat healthily":
  1. Base your meals on starchy foods (carbs, for those of you who don't understand)
  2. Eat lots of fruit and veg
  3. Eat more fish
  4. Cut down on saturated fat and sugar
  5. Eat less salt
  6. Get active and be a healthy weight
  7. Don't get thirsty
  8. Don’t skip breakfast
So far, so sensible.  Then there seems to be endless links to the "horror" of fat, what sort of fat you should eat, where you get good fat from, recommendations to use "reduced fat" dairy products 
To enjoy the health benefits of dairy without eating too much fat, use semi-skimmed milk, skimmed milk or 1% fat milks, lower-fat hard cheeses or cottage cheese, and lower-fat yoghurt.
So you would be forgiven for thinking that the most important thing to do, to "eat healthily" would be to cut out fat, right?  I mean, that's what we are constantly being told to do and we are bombarded with "fat free" yoghurts in the supermarket?  They MUST be good for you because "all fat is bad".  To lose weight and "eat healthily" absolutely the first thing you should do is cut down on your fat intake.  I mean, in the minds of the "average" person, fat = fat, right?  I mean fat people are fat because they eat too much fat.  If they just cut out the fat, they would be thin and their lives would miraculously be transformed into a Special K advert.  Just like yours will be when you manage to lose those stubborn 10lbs.

FAT IS BAD FOR YOU, RIGHT?

Bullshit.

Age GroupTotal Fat Limits
Children ages 2 to 330% to 40% of total calories
Children and adolescents ages 4 to 1825% to 35% of total calories
Adults, ages 19 and older20% to 35% of total calories

http://www.cdc.gov/nutrition/everyone/basics/fat/

Bet that shocked you, huh?

Another note of caution, for those of you who still think that the "fat free" option is your ticket to a better life.
What 'lower fat' or 'reduced fat' really means 
Just because a food packet contains the words 'lower fat' or 'reduced fat' doesn’t necessarily mean it's a healthy choice. 
The lower-fat claim simply means that the food is 30% lower in fat than the standard equivalent. So if the type of food in question is high in fat in the first place, the lower-fat version may also still be high in fat. 
For example, a lower-fat mayonnaise is 30% lower in fat than the standard version, but is still high in fat. 
Also, these foods aren't necessarily low in calories. Often the fat is replaced with sugar, and the food may end up with the same, or an even higher, energy content.

So all you idiots who ignored the blog yesterday and are continuing to try to lose weight by choosing the "low fat/high sugar and icky chemical options" or are strutting around proudly boring everyone with your 5/2 regime or how much weight you lost to "get your summer body", just remember those 5lbs extra you will be gaining in two years time and the fact that you are pouring money into huge International Food Companies who aren't there to help little ol' you lose weight and attain Nirvana.  They are there to make a profit out of mugs like you, who think that "low fat" = "healthy eating".

Get your facts straight and learn about nutrition.  Properly learn.  Don't be taken in by the massive PR by the Food Companies and the fact that the "obesity" crisis is running the minds and the mouths of our Government "health" gurus.  Read and learn the FACTS, not the hype.  Stop falling for the whole "if you eat blueberries, you will not get cancer and the fat on your thighs will miraculously disappear" stuff that has woven its way into every day thinking about nutrition.

Fad diets are just that - fads.  

Just saying.

Signed somebody who is really pissed at people talking about diets, thinness and becoming evangelical about the latest supposed "healthy eating" fad.

PS Fat is essential for brain function.  Maybe, all those idiots on "low fat" diets are harming their brain function by not giving it the right nutrients?  Conspiracy theory alert: maybe that's how the big Food Companies stay so profitable, because a large percentage of the population have lost their ability to think clearly because they aren't eating enough fat.  

Saturday, 20 July 2013

How to pose for photos

 A masterclass from Laura Collins

First check your hair......











 Put your feet in Ballet Position 3




Come closer together



Do a really over-exaggerated cheesey smile.


not forgetting to include Trouble for the Aww factor


Et Voila!





Or you can just be REALLY cool, like the photographer EB



Loving that hat.....


Obsessed

I had a particularly heartwarming message from a fellow chemo patient, who happens to have the added complication of anorexia nervosa.  Sometimes life really sucks.

One line brought me to my knees.

"who wants to spend whatever time we have here obsessed about freaking calories?!?!"

I agree.  Yelling loudly.

All of you who are on one of these ridiculous 5/2 diets or are counting calories or obsessing about carbohydrates - JUST STOP IT.

Life really is too short to waste time denying yourself food in pursuit of the "ideal" figure and, according to every magazine and advert, the corresponding "ideal" life to go with it.  Sorry to disillusion you but even if you do end up loosing weight and achieving the goal of some random number, which doesn't actually mean anything, here's the kicker.

YOUR LIFE WON'T CHANGE FOR THE BETTER

And, statistically, you will probably put on the weight you have lost AND an extra five pounds within 2 years.

I am not going to get embroiled in the argument about the few people who need to lose weight for medical reasons.  I am talking to the majority of the population, male and female, who have fallen totally for the idea that being thinner will change their life and, if they could just "lose those last 10lbs", are expecting a happy life.  It's all smoke and mirrors, people.  You are buying into a fairy tale, sold to you by those giant food companies, among others.

Just saying.

PS I am not really into vanity.  I just can't see how someone's physical appearance matters that much.  It is not part of your self-esteem unless you let it be.  It is Emperor's New Clothes stuff.

Dragons

So the post on dressing gowns seems to have a chord.  Thank you, darling Lizzie, for making me smile so much this morning when it arrived.


(It is really tough to take a photo on the computer - all that fiddling around with the mouse and turning round really quickly....)

I am most splendiferous in red dragons.  I just wish my hair was a little less wispy - is that bad of me?  I am lucky to have any at all, to be honest.  However, I yearn for a back view with more hair and less ears.  Sigh.

I have had some lovely presents and I appreciate them all greatly.  Thank you.  The family think I am mad when I burst out laughing at my Chinese dressing gown.  The girls don't read the blog so they have no idea! (Insert evil laugh)

The dressing gown that the Fairy Blogmother wore whilst here has been declared a "Never wash again" zone.

I am looking forward to another vague hand-waving day today.  HWISO has gone off to Lords to watch the cricket.  G is at a festival and Em and I have decided to have a cooking frenzy.  My very dear friend, Sophy P, is coming over.  She, too, went to the same prep school as S and I.  I will have to find out about her dressing gown and keep you posted.  I know she knows where the kettle is and is a dab hand at eating cake - we'll be fine.

I am always amazed at how many people read the blog.  My greatest surprise was Loose commenting about the "labia pink shirt" - an in-joke from 70 million years ago.  How did she track me down?  My favourite L story is about her father, who was made High Sheriff of Hampshire.  In accordance with tradition, he bought in vast quantities of expensive wine with which to impress the other local dignitaries in the endless round of quaffing, which is mandatory when High Sheriff.

Unfortunately, a few days later, unprecedented rainfall flooded the cellar and all the wine bottles lost all the labels.  

There followed a year of High Sheriff parties where you played Russian Roulette with the wine after the R family rescued what labels they could from the stinking water and slapped them back on the nearest bottle.   You were as likely to get a glass of St Emilion Premiere Cru from a bottle labelled "Tesco's Everday Wine" as you were the other way round.  It added a certain "Je ne sais quois" to the party that has been unequalled since.


FTR, L was not at my prep school but I have no doubt that she, too, had a nylon quilted dressing gown in a hideous colour....

Friday, 19 July 2013

Good stuff and bad stuff

I have realised that my previous blogs make it sound as if I am criticising the US.  I am not.  I was fascinated in the differences between our two cultures for many reasons.  Each has some really good points and each some terrible.

For example, sometimes I wish we, in the UK, could choose our clinicians.  In theory, you can choose to go to a particular specialist but you have to have good reasons to go out of area, not be satisfied with your own local option and fight the system to be able to change.  In the US, it sounds ideal.  You can choose who you want to treat you, as long as your insurance covers it.  Well, that was my view anyway.

But really it is not like that.  The fights with insurance companies, the co-pay, the huge premiums, the exclusions, the difficulty in switching jobs because of switching health insurance, the paying for just going to see the doctor can lead very quickly to bankruptcy and despair.  A long term health problem could leave your family destitute.

Neither system is ideal and we have a lot to learn from each other.

The most important difference we discovered whilst meandering through Waitrose was that here in the UK we are very much medicine based for mental health problems, whereas the US tends to be more therapy based.  Therapy here is offered: a) grudgingly as an adjunct to more medical based treatments; and b) for far too short a time.  Six weeks of CBT to "cure" an eating disorder?  Sigh

There were some things in both systems that we both rolled our eyes at and others that we looked longingly at.  The medical insurance situation is a nightmare for some parents in the US.  People are dying because they can't afford or get the medical care they desperately need.  Meanwhile, here in the UK, with our wonderful free healthcare, we are still reeling from the Stafford scandal.  

I have just got off the phone with the pharmacy at my hospital.  Back in April, a harried A&E doctor didn't sign the right bit of the form to say I didn't have to pay for prescriptions.  I have been sent a letter and a form to fill in and sign but the form is not the right one and there is no box to tick saying "Cancer patient".  This means another form being sent.  Both the lovely Linda on the end of the phone and I agree it would be much simpler if I could just tell her over the phone and she could tick the right box.  Sadly, the computer says No.  Incidentally, once I have filled in and signed the right form, it gets filed away and should the same thing happen again, there is no cross referencing system so I will be sent the wrong form and then another form to sign again.

Sigh.

Enabling

Just because parenting is confusing, difficult and hard-work, doesn't mean we don't like a challenge now and again.

Both Laura's daughter and mine were utterly wide-eyed with horror and anticipatory mortification when Laura wanted to dye her hair blue.

I freely admit to enabling her by taking her to buy the dye, putting it on for her and rinsing her hair afterwards.

That is what peer-to-peer support is all about.

The sunburn was entirely her choice, though.


Radio silence

For those of us who live in the UK and listen to Women's Hour, hearing the full technical terms for female genitalia on Radio 4 at 10.15 in the morning is quite normal.  It is another one of those differences between us and our American cousins.  Laura nearly fell off her chair when words like "labia" and "vagina" were thrown around with gay abandon by the inestimable Jenni Murray.

We talked about religion a lot and the difference between parenting teenagers in the US and the UK.  I think G arriving back from a camping party at 7.30 am - no, there was no parents staying up all night to patrol and the boys and girls weren't billeted separately - was an eye-opener.  The drink thing is another vast difference.  Here in the UK, and on the Continent, there is not such a big deal about alcohol.  Whilst I do admit that binge drinking is a major problem in the UK, I do sometimes wonder if it is because we have an 18 rule for buying and consuming alcohol.  In Italy, I believe it is 14.

G has gone off to a festival for 4 days and is camping with a load of friends, some boys, some girls.  She is very keen to camp with one boy, not because she fancies him or is in love with him, but because he has brought a paddling pool to the Festival and it is very hot here.

I am well aware of the risks of being too laid back about all these raging teenage hormones and the consequences.  I am also aware that the more I say No, the higher the "Sod You" temptation to try it anyway.

It is never easy being a parent.  You never get it right all the time.  I am glad that I live in a country where "clitoris" is a non-remarkable word at 10.15 am on a Wednesday and I admit to quite enjoying the look on Laura's face.....

Thursday, 18 July 2013

That's how you do it.

The wonderful Susan Ringwood from Beat came over whilst Laura was here to see her.  I think we managed to get more stuff done in an hour with a cup of coffee and a quick swim that could be achieved in days at most eating disorder conferences.

Perhaps this is the way forward?


Respecting your elders

I was whiling away some time in the Day Unit, waiting for the lovely Dr Emily (she of the face of an 18 year old) to come and see me and prescribe antibiotics.  In came two ladies who were, it is fair to say, a generation older than me.  We got chatting.  One lady was in for  the first time, obviously nervous and worried, but putting a brave, jolly, "this is how we won the war" face on it all.  She wanted to know all the answers that I couldn't give her like how long would it take to have the chemo, how would she feel, would her hair fall out?

She came in with her son, who was about my age, who obviously adored his mother.  She did that mother thing of telling him to go away and listen to the cricket, she would be fine.  I felt for him, while he tried to gently swat away his mother's fussing and compute the whole "It's my turn to look after you now, daft bat" relationship switch that happens, when a parent becomes ill.

I couldn't answer her questions and felt sad when I had to tell her that I wasn't going to win this particular battle.  I just came out and said it when asked.  I didn't want to, not for my sake, but because I didn't want to take away the tiniest bit of hope from her and her son.

For us patients, the cattle to slaughter process just rolls along carrying us with it.  For those who have to stand by and watch the needles and the poisons and accept that they can do nothing but watch, it is hard.  Sometimes too hard.  I won't let HWISO come to chemo.  He doesn't need to watch me stuck with needles and the fight we have to extract even small amounts of blood from collapsed veins.  He doesn't need to watch the drip drip drip of colourless poison or hear the ping of the machine announcing that I am "full up" today.  He doesn't need to see the fear in other carers' eyes or hear the sometimes pitiful hope in the face of disaster.  He doesn't need to watch blood transfusions for the helpless or listen to the intimate details of others' illnesses and treatments.

What he could do with is the nurses - their relentless dogged determination to not let anyone down, to comfort and cajole, to nurture and to continue to do one of the hardest jobs in the world with grace, humour and dignity.  Bottling their essence would be a unique gift to the world.

A special shout out to the lovely Helen, who donned her gloves and remembered her specs to help with the blood leeching today.  It is not her normal job but, once challenged, she rose magnificently to the occasion and giggled charmingly, which made it a less harrowing experience than it should have been.

She also LOVED the t-shirt.

Thankfully, unlike the US, I can't get "sacked" by the NHS for wearing it......


Friends

It was so lovely to have Laura, but also rather surreal.  I was deeply honoured that she wanted to come and see me but, once she arrived, it seemed like she was a part of the family and had been around for ever.

There were few quiet moments.  We got a lot of stuff done, including something really cool, which I promise to tell you about as soon as I can.  People came and went and Laura, in turn, charmed and was charmed.  Christine arrived with food on Tuesday - best chicken and summer vegetable stew ever - and somehow that made the surreal, real.  It is really wonderful to be able to introduce L to people whom she doesn't know but whose lives she has touched through her amazing work.

The other surreal thing was that I suddenly realised that Laura had come, with a sense of urgency, because she doesn't know if she will ever see me again.  It hadn't really crossed my mind.  I tend to view my intraweb friends as as real as my other friends, whom I see all the time.  In fact, many of them are closer to me, and know more about me, than people who have been eating and dancing with me for years.  To me, a physical presence is really not that important and I love the written word.  Skype pings all my bells - except when my big brother shows me his motorcycle injuries "live" on camera.  Therefore, I didn't feel the poignancy of the visit in quite the same way as Laura.  I was just dazedly wondering what I had done to deserve such a lovely warm woman wanting to spend time with me.

I did that stiff upper lip thing of not crying.  Laura did her best too.  It was, for both of us, a gentle relaxation into the whole "sister that we've never had" thing.

We did do a lot of cross culture stuff too.  L has never heard kitchen paper towel described as Elephant Loo Roll before - that tickled her.  She found that all my friends were as obsessed with their dogs as I was - if not more so.  She thinks that we complain way too much about cold, wet, miserable English summers and we really do drink that much tea.

I discovered that kettles that switch themselves off when boiling are not standard in the US, the definition hoovering is not what I thought it was, Americans can swear and that the British woman's ability to change out of a wet bathing costume with the aid of a towel and a bit of wriggling is a weird, amusing but amazing concept to our cousins across the water.

It was a learning experience for both of us and one I wouldn't mind repeating.

Counters.

Sitting in the garden yesterday with FMB, EH and the Fairy Blogmother, we were talking about how backwards I am.  In that every treatment the darling NHS throws at me seems to make things worse and everything that I do against their advice (and years of clinical research and evidence base) seems to make things better.

For instance, chemo patients are advised to stay out of the sun.  I have stayed firmly in the sun much more than is recommended.  I have also been told to moisturise like a dervish for my hives.  Now I have stopped moisturising AT ALL, my skin is amazing.  (That may also be to do with the salt water pool.)

The chemo that was supposed to help made things worse.  I have, as part of the Oh Sod It, taken up serious smoking with enthusiasm - and relief and, after 6 months of abstinence, gone back to a glass of Sauv Blanc in the evening - well, more than one glass with the FB around but that was part of the fun of having her.

Imagine my amazed bemusement today when I was told that my new regime of "do everything you're not supposed to because it doesn't matter" seems to not be having the evidence based effect it is supposed to.

I had to go in to have a blood test before chemo so this morning, having picked G up from an overnight camping party in Minsmere at 7.30 am and driven her to a friend's house to get some sleep before Latitude, a round trip of 3 hours, I took myself off to the hospital for my blood test.  So confident was I that this was going to be a quick and easy trip, I parked in the "20 minutes only" parking bay.

The lovely phlebs couldn't manage to get the blood out of the usual channels.  Every time they got in, the vein collapsed, so I trooped back to the Day Unit, muttering complaints at the lovely Helen when I passed her in reception.  I also coughed "fruitily", which led to an avalanche of tests that ended up with chemo being cancelled and antibiotics being prescribed.

The backwards bit of this whole process was that my chest X-Ray (3 weeks after the last one), shows visible signs of improvement, especially round the lymph nodes.

Huh?

So I didn't get to wear the T-Shirt to chemo today because there was no chemo but I did show everyone a picture of it on my phone and they all made me PROMISE to wear it for the next chemo because they think its brilliant.

Signing off to go and have a fag and google more carcinogenic things I can do to myself that are pleasurable.....

Shame

She's back looking beautiful, tanned and glossy with no passport - apparently "Passports of Shame", aka Passports for Idiots,  get confiscated at Immigration.  Immigration know they are PoS because they are cream, rather than red.  Immigration have perfected an ironic smile and a way of saying "Oh dear" that compounds the whole "I am an idiot and I am NEVER going to lose my passport again" thing.

Insert evil laugh.

It is good to have her back.  Especially as G is off at a festival for 4 days.  I am eagerly anticipating the car full of gently festering clothes and tents on Sunday.....

Wednesday, 17 July 2013

Busy being busy

I haven't had time to do anything much whilst the Fairy Blogmother has been here - full report later.  Sometimes, however, something crosses my desk which is just too good to miss.

How to be a Friend to a Friend Who's sick is just such a blog.  It made me smile.  This is the one that made me smile, for a different reason

"Don’t ask, “How are you feeling?” It’s an awkward question for someone who’s seriously ill."

Not only is it an awkward question, there are times when I reply truthfully and people get weirded out by hearing about how it feels to walk around with lumps of terminal cancer, poisonous medicines and pain.

Don't ask the question unless you are prepared to hear the honest answer.

Monday, 15 July 2013

Surreal

Laura has landed safely with us, in the sticky heat of a humid afternoon.  We sat by the pool drinking tea and it seems like she has always been here and is part of the family.

We have talked and talked, veering wildly between different subjects, not pausing for breath but with gentle silences at times.

It seems very natural but I keep having to pinch myself.

Just to keep my feet firmly on the ground, after Laura had tucked me up in bed, I got a text from G asking me to pick her up from a camping party really early this morning, so am on my 2nd cup of tea and wondering if anyone will notice if I go in my new pyjamas.

Perhaps if I wear my new hat, from lovely Lianna, everyone will be too transfixed to look down....




Oh my

Some people just manage to find the right words.  The Fairy Blogmother came with this as a present from the wonderful C, all the way from the Great Pacific North West.

Love you, girlie.  You have got it so right.


It was beautifully ironed when it arrived in its crisply wrapped parcel along with pjs (wearing the shorties!) and I LOVE YOU.  Nobody, except another tallie gets thats PJs so often are too short in the legs, too short between crutch and waist (hate sleeping with a wedgie) and that proper PJs have pockets...

Sunday, 14 July 2013

On a sadder note

I had an email from my lovely 29 year old, J, chemo mate, who I haven't seen for a few weeks.  Apparently, the chemo wasn't being effective and she has had a horrid horrid tiring and traumatising mastectomy.

All I can say is bugger the world.  She is too young to go through all this and with no hair. 

Keep her in your thoughts, people.  Once the Fairy Blogmother has gone, I will get her over for a bit of sunburning in the shade.

The morning after

Note to yesterday's blog:  The WEST, not the Mid West - something to do with rainfall...

I can't thank everyone enough for their cards and their presents and their messages.  I had a wonderful day and am now the proud possessor of an Infinity bracelet from B, E and J, a Kitchen Aid kettle that lights up and pings and makes really good tea, an iPad, flowers, wine, Parks and Recreation Seasons 1-4, chocolate and massaging slippers (No, Really!) and had a wonderfully happy lunch in the garden with J and H, Lottie, G and two friends of theirs.  S is "on Ramadan" so couldn't eat but made up for it in serious banter.  He spent lunch trying on G's impossibly glamorous Gucci sunglasses, inherited from her impossibly glamourous grandmother.





He Da Bomb.....


Our Man in Havana.....or rather St Vincent....appears to be called Gerald and is hopefully going to get Em sorted out with a new (expensive!) passport tomorrow so she can fly back on Tuesday night.  The upside - and yes, there always is an upside - is that she gets a more "updated" photo on her passport and no longer has to travel with a cute reminder of her 14 year old self....

Not that the same can be said for the other idiot in the family.  Big bruv, Tim - it's fine to have a mid-life non-crisis and buy yourself a motor bike, even if it is a ridiculous colour.  It is, indeed, a salutory lesson to come off it on a hair pin bend and duff up your knee.  It is NOT alright not to clean your "amazing graze" thoroughly - ask Rod McClymont.....

I am feeling really quite well, despite no steroids this morning.  I am sure it had something to do with coming down in the middle of the night for a second helping of H's Bannoffee Pie.  How can anyone make a pudding that good without a recipe, I just don't know but man, oh, man, it tastes divine at 11pm by the light of the open fridge.

The downside of chemo (apart from the blown veins thing) is the thinning of the skin.  As you can see from the above picture, we were in the shade.  I was doubly protected by the Mulberry tree and a parasol but still managed to burn my face.  I am not used to treating myself as a pale skinned red-head and loathe the greasiness of suncream.  I think I shall put on larger sunglasses and hope no one notices.

Dog Lovers Trick of the Day.  If there is no water for a labrador to play in, a barley field is an excellent substitute.


video


Saturday, 13 July 2013

All going beautifully

Lunch with friends in the garden. Fabulous day.  iPad for my birthday.

Phone call from Em stuck in Mustique airport with no passport.

Loving Kevin from the Foreign Office in London for dealing with slightly tiddly mother.

"What's her full name."

Emily Idiot Bevan.  That's India November delta India apple...."

And totally hysterical child in hot airport refusing to answer phone to strange number.

As presents go, I prefer the iPad. 

WAKE UP

Look here, Family.  It's now 7.40 am and I have been up since 5.30 am and it's my BIRTHDAY.

I want to open my cards and presents but G has taken them up to bed without her so I can't open them till she wakes up.  UNFAIR.

The joy of being part of an international team on the forum is that waking up at 5.30 am is not a lonely experience.  I got to chat to C who is in the Mid West just now about cowboy boots and lassos.  Then D came on board and we chatted about making rosehip and black raspberry vodka, rhubarb mojitos and blackberry whisky.  Then my Texan Twin rang me for half an hour, just after midnight her time, so we could tunelessly sing Happy Birthday to each other.  The wonderful Australians have been posting pictures of George Clooney, Hugh Laurie and the delightful Australian cricketer, Agar, all night long on Facebook.  Bliss.

I have had loads of messages and posting from so many dear friends.  Meg, yours touched me especially.  

But now, I just want everyone HERE to wake up and play.  So, should I make the dogs bark, turn up the music really loud, burst into G's room singing Happy Birthday to Me or just enjoy the P&Q?  Hmm, I think I will go and eat my birthday cake for breakfast instead, because I can, and share a bit with the dogs who are always pleased to see me and happy to gaze at me adoringly, drooling, whatever time of the morning it is.

Friday, 12 July 2013

Dogs win

So the second part of S's email this morning was talking about a granddaughter's disappointment that her grandmother had more pictures of old, naughty, smelly dogs that she did of her children and grandchildren PUT TOGETHER.

OM had too.  She did insist on having pictures of the last two Jack Russells in prominent positions.  Unfortunately they were the MOST unattractive of the lot, throughly overfed and disproportionate.  My brothers and HWISO nick-named them the Rugger Balls because that is exactly what they looked like.

Feeling smug, I went to make my bed.  Left my bedroom tidier but considerably less smug.  The pictures on the walls are mostly pastel portraits of the dogs, all 11 of them, including one that dates back to 1977, that I acquired from Mum.  The photos - well there are a couple of the girls as small children, lots of photos of Tubby, the Jack Russell my parents gave to my father in law for his 40th birthday (some 38 years ago), Bruce, HWISO's 21st birthday present from his godfather - HWISO was 46 last week - and other labs from then onwards.

There is a photo of HWISO with a huge salmon in Iceland, some 30 years ago and a wedding picture of us in 1994, both in big frames so sort of scooched to the back of the display so as not to obscure any of the smaller (and more important) photos.

We "humans" are outnumbered about 6 to 1 by photos of the dogs.

Personally, I think dogs are less camera shy, are quite unbovered about photos of them asleep with their tongues hanging out and don't know what mascara is.  They don't have bad hair days, need lipstick or stick their chins out at a peculiar angle to make themselves taller.  No wonder, there are more pictures of them.....

Longest EVAH

time spent apart from my eldest, who is whooping it up on a grown up holiday.

Can't wait for next week.  She thinks she is coming back on Wednesday.  The diary says Thursday.  We shall see.

Ten years ago, this was her on holiday in Southwold


This is her 10 years on (Clue: she's the tallest!)





Can I have a crisis

just for a moment?  It is a vanity crisis so it seems a little self-indulgent but, heck, what's the point of a blog if you can't have a good old mimbling whinge now and again?

So I am back on a high dose of steroids, which make me "flushed".  As I am quite red faced anyway and suspect that if I could ever be bothered to go and see a dermatologist, would be diagnosed with rosacea, I now look very "ruddy faced farmer".

HWISO and I are off "out" this morning to Southwold.  This necessitates me LOOKING IN THE MIRROR (Ewww..) and PUTTING ON MAKE-UP, so I don't frighten the horses when we get to Southwold or stop the traffic as everyone thinks I am a red warning light.

Some time ago, G MADE me buy some foundation.  I am not a great fan of make-up per se and never wear it unless "going out" to a party as it makes me feel greasy and uncomfortable.  However, this morning drastic measures and all that required me to put some on.  This meant looking in the mirror.  These days, catching sight of my reflection causes me to pause and think "Who's that funny white haired old lady?".

So I didn't turn on the light in the bathroom, dabbed around with my "foundation brush" which G also made me buy, stabbed myself in the eye whilst trying to put mascara on the five remaining eyelashes, brushed my wisps into some sort of slightly less Einsteiny order and came downstairs.  I am perfectly sure I look very peculiar.  Sadly, G is not here this morning to do her usual mother hen bit of smoothing out the lumps and HWISO can be guaranteed either not to notice or not to say anything about my one-sided mascara application underneath which lurks a suspiciously "vampire" eye and the other one mascara less, in case I did the same thing again or forced myself to turn on the light.

Irish Up's bitty plungers are looking like the only sane option when confronted with a mirror these days.....

Alternatives

So now I am off on a ramble about nothing to do with cancer or eating disorders because I am onto dogs and nicknames because of S's overnight email and the reply one from T (whose real name is C, but will remain T to me and S, just because.....)

I am the youngest of three children, traumatised and mentally scarred for life because Our Mother (henceforth known as OM) couldn't remember our real names.

My oldest brother is Timothy - a perfectly respectable name, which is often shortened to Tim, again perfectly respectable.  My middle brother, Michael, has always been called Mick to the extent that, when he got married, I thought I had come to the wrong place when he was asked "Do you, Michael David Kenneth....".  I am Charlotte, shortened to Sharlie.

OM called Tim "Tuppence" until the day she died and Michael, "Mickey" and me, "Mrs Moo". That is not strictly accurate.  She often called us by each others names and would get very cross if, for example, I didn't answer to "Mickey".  

Most often she called us by the dogs' names - in some cases, dogs long gone and departed some 20 years or so.  

"Emmy, Betsy, Rosa, Clara, Fluff, Eliza, Amelia, Timothy, Michael, Charlotte" was what would come out when OM really wanted something.  I think it was the only time she called any of us, dogs included, by our real names.  Except Fluff, who was a rescue Jack Russell and we never knew her real name so she was always called Fluff.

Sometimes she would miss me off the end, because she had either run out of breath or was in danger or forgetting what she wanted somebody for.  So I felt miffed because I was left out.  My brothers, on the other hand, got called by girls' names AND were expected to respond.

OM didn't confine this to her children.  She liked to spread it around to her son-in-law.  HWISO's real name is Christopher - Christopher George when he says something outrageous - Chrissy to all the women and girls, Chris to the men, Chrissy Crumble to OM.

Sadly, it is a trait she has passed on to her children.  Timmy Tuppence nicknamed Emily "Em Mem Swem Bem" as a baby - it has stuck.  Georgina - Georgie Porgie and all that.  His own children are, I am sure, totally uncertain of what their real names are and the youngest grandchild, Alice, shall forever be known as "Little Alice" despite the fact that she is really tall!

Talking of dogs, as I was in a vague hand waving way, I should feed and walk them - or rather feed and walk the labs and then gently tempt Pirate from his cosy nest with a Dentastick and throw him outside for a pee, before he gets his biscuits......