Search This Blog

Friday 29 November 2013

a love-hate thing

From Charlotte herself this morning, on Facebook:

"Hates hospitals,loves nurses and hopes to be transferred nearer to home soon."

Extraordinary woman. Nine hours of major surgery and without a beat she's "moving on."


Thursday 28 November 2013

Joking With Nurses

I have second hand news from Charlotte's husband, and it is GOOD NEWS: "doing really well after 9 hour op yesterday out of pain and feeling like a new person, visiting later she is joking with nurses."

Wonder if she's eaten her breakfast?


Wednesday 27 November 2013

Out of surgery and stable!

I have heard through a friend of the family that Charlotte is out of surgery and stable.

As C would tell us, you may, now: "breathe."


Tuesday 26 November 2013


Hopefully, this will be the last morning of my tea in a beaker, of waking up to a bed damp with blood and pus and smelling of decay, the last morning of having to decide between cleaning my teeth or washing elsewhere.

This time tomorrow we will be off on a new path,whatever the outcome.

Bring it on

Monday 25 November 2013

No breakfast again today

Because no one is "allowed" to spread butter on my toast.  Following the utterly disgusting meal given to me last night and the interesting lunch yesterday, do you think it is worth pointing out to the hospital that I haven't eaten a single meal since I got here on Saturday?

I wasn't expecting the Ritz or even a private nursing home but I was expecting a bit of nursing - no one will help me wash, no one will cut up my food, no one will help me dress.  I am supposed to be here for another two weeks, even more incapacitated than I am now.


I can't see it being much fun. 


I shall miss him so much. There was nothing so cheering as his little face appearing round the corner pushing a wheelchair. Knowing that he was at home every night with HWISO watching golf or rugger and eating supper admidst much  fork waving soothed me.

HWISO is now firmly the third stooge, for which I am glad and I leave him  in good hands with Tim and Mick.

We had difficult conversations about vegetative states and loosing arms, funerals and Christmas. We had overwhelming giggles about bumps in the bed - you had to be there!  And just plain silence.

Italy doesn't know how lucky it is to have him. I am very aware of how precious these fragmented last ten days have been. As are the rest of the family. Fly safe, big bro.  

Sunday 24 November 2013

Welcome to Essex

Whilst gnashing my teeth over the Ed Milliband Desert Island Discs, to my delight Heavenly Gay Godfather, resplendent in a violet cashmere, pink socks and delightful Harris Tweed jacket swooped through the door, bearing gifts of delicious cakes and granola (for the constipation!).

We went to Costa chuntering about quite how sad the Milliband thing had made us - both of us not keen on Ed - can you tell?  Neither of us could resist a bitch about the music choices. (Jerusalem? Really? The cynic in me says No...)

I think I am quite enjoying residing in the suburbs...

Sent from my iPhone

I wish I liked cereals

They are so easy to eat with one hand, once you have opened the stupid milk thing. Much easier than buttering a piece of bread.

Dare you to try it.

And not cry with frustration

Or throw your bread across the room in a snit

Or default to not eating


Doing something coolwiththe Intrawebz.

Not sure how I have managed it or what I have done and have very little doubt I will probs not be able to do it again, but here I am, people, alive and relatively well in Basildon

Taxan, my nurse, has looked after me well and is a brave little lion, when standing up to doctors. He doesn't do the "I've bleeped" accompanied by a hopeless shrug that I have become  used to over the past few weeks. He doggedly keeps bleeping.

After my little trip round Essex, so that Tim could win the "places I have been to beginning with "B" competition, I was quite pained up last night and in the end resorted to taking a drug that gave me St Vitus Dance symptoms last time I took It.

I also got to meet the man with magic hands who put a bandage on ya arm to help with the lymphodema. He also happens to have mesmeric eyes and should Be whispering sweet nothings in your ear on a Mediterranean Island, rather than when you are a snotty fetal ball, refusing to relinquish your smelly dog blanket. But,hey,I'm not fussy.

I am now off to Google what time Costa opens and try and take some photos..... 

Saturday 23 November 2013

Guesting Again

It is not always easy to understand just how debilitating pain is. A little bit and you can walk it off and plough through, but when it is relentless and 24 hours and when its waiting in the wings you know its going to jump to really bad. It wears you down. 
You are weak and even when its not there you know the massive slow moving impervious wave of strength sapping inevitability will take over and there is nothing you can do except numb yourself.
And cry when no ones looking.

And the pain relief is wonderful but it steadily turns you into a person you don't want to be.
And even though you care, you cannot afford to do anything about it.

Mine was just a dodgy arm and a smushed up ankle after coming off the motorbike. That is nothing compared to cancer. 
Alcohol and aspirin do not even begin to approach morphine for the negative effects. 

It is inspiring to see Charlotte's strength, not only in continuing the battle against Fucking Cancer, but to find the good in people and life and every day events.

Her praise for the staff in hospital is well deserved. They understand pain. They understand how hard it is to cope with and how hard it is to help a patient recover when they are in pain. They don't mess around.

The very good news is that there is a spare bed in Basildon. So we picked Charlotte up from West Suffolk Hospital in Bury St. Edmunds and took her home to pack for a long stay in Basildon. 
The infection is leaking all the time and she is getting through several shirts a day.

At home she saw the family, changed shirt for the fourth time in the day and loaded up on morphine and purples and whites.
The least painful position in the car seemed to be in a back seat with 3 pillows in various positions and a dog blanket. 
The dog blanket may not be for warmth but more for comfort. Pirate (a bad tempered terrier whose first name seems to be Bloody) can be silenced and comforted immediately by chucking a blanket over him. Maybe its the same for Charlotte.
We stopped for a coffee and some sandwiches at a service station on the A12. Of course we joked about the chances of me being arrested for domestic violence as she got out of the car in a Husky, stained shirt, plaid pyjama bottoms and ugg boots. Left alone for a minute Charlotte had an offer from a kind lady in the queue to redress her wound.... which was looking pretty disgusting by then. We declined and continued on the wrong road until we hit Brentwood and could safely retrace our way through Billericay to Basildon, bypassing Benfleet and multitudes of other Essex B's

Charlotte was immediately seen by one of the surgical team who took great interest in the panoply of pharmaceuticals she had. We rearranged the room to cater for a one (left) handed patient, swapping the side table with the visitors chair and stuff. 

One of the marvels of English snobbery is that at really high levels of the medical profession where most countries would have a Professor Doctor Doctor, in the UK the top guys become Mr.
So within 30 minutes of arriving Mr. Shah saw Charlotte, discussed surgery and compression bandages and set wheels in motion. 

The admission process then continued with the nurse telling Charlotte off 20 times for smoking and asking about her drinking about the same number of times. Unfortunately it seems he took her lack of memory over her drinking (she's hardly had any for weeks) for a cover up of a heavy habit... We ended up having some fun anticipating his next question. He did well.

But she has her own room, with en suite (well it is in Essex), a bed that goes bwwwww in 20 different ways and another set of nurses who understand pain.

She also has a telly that she won't watch, internet she can't connect the iPad to, so it won't be used, a couple of seasons of Homeland, which she may be able to watch in 30 minute sessions and some headphones, presumably so she doesn't wake herself up when she snores (!@)

Internet and phone reception are a problem so blogging will probably be rare and comments and emails will not get replies. Sorry.

Meanwhile back at the ranch, Georgina and Emily luckily had parties to go to so Chrissy and I could enjoy his wonderful lasagne (he's a good cook), a glass of red and an evening of rugby.
Tomorrow is another day that will be filled with choices, decisions and the unexpected… 
Tonight we hope everyone sleeps well.

Friday 22 November 2013


Things you wish you'd been warned about:

That they had injected Grace with blue dye. Firstly, because she looked really ill when she came back from theatre and it was hard to give her an encouraging smile.

Secondly, when she started asking whether her wee was blue finally sent me over the abyss between reality and

The "B" Word

Singing with the sisters

We are the hardcore four, all with long term icky conditions. No ingrown fourth hair down on the left shin here. Amazingly disparate women. Compassionate, caring, funny. They have been trying to teach me to speak "Essex" this week. I have been trying to learn.

Ok, peeps, the idea is that I am going into Basildon Hospital.just thought I would say as my Dad seems to think he is coming to visit me in Brentford, Tiff has some weird plan involving driving to the end of the Central line and getting on the Tube or maybe "Coming via Liverpool Street Station."

"That would be the easiest way to come and seez ya, doncha think?" She said. (She is learning Essex too).

"No, " I replied. " getting on the A12, following signs for Basildon Hospital, parking in the hospital car park and coming to see me that way would get my vote."

Other people are coming to variously Basildon, Brentwood, Braintree - no, no,no, the big shopping centre with IKEA is Thurrock, doesn't have a hospital and doesn't begin with "b" but, yes, you were close. Billericay has been mentioned. The reference to watching all those lovely aeroplanes threw me for a while but I realise you meant Biggin Hill, Brentwood (more shopping - a big John Lewis.  I am sure I am going to feel an overwhelming urge for matching bath mats"...

As the operation draws nearer and I become more physically repugnant, I know it doesn't matter where I end up or who gets to see me. I only know that I know what it is like to be driven mad by pain.

It's a Bugger. 

Clearing the backlog

It seems forever since I had enough energy to blog. I have spent the last few days asleep either in my own bed or in hospital. All of it has been in pain, despite the best efforts of anathetists, pain management specialists and the wonderful nurses. And they are bloody brilliant those nurses.

I have been in and out of hospital every day for  a week now. The infection in my shoulder is not responding to the antibiotics. In fact, the abs seem to be making it worse. Even the hardened Triage Nurse in A&E had tears in her eyes when she saw it yesterday morning.

Tim has been our lifesaver and anchor.  I am so grateful for him. And his beard.

There have been good moments. Winning with consultant that the antibiotics weren't working. Sneaking Ali and her supply of chocolate in, despite strict visiting rules. Being put on a new ward with a bunch of intrepid amusing women.

To the nasty little man from pharmacy, I hope no one treats your mother or sister the way you treated me. I am not a freak show and you have no conception what I was going through. To try and get me thrown out of hospital because I swore when my pain medication was over half an hour late just proves to me its time for you to start saving up for one of those penis extensions.

Don't you dare judge,me as being some kind of spoilt brat and curl your lip and mimic my posh accent. Keep your pseudo working class prejudice to yourself. I happen to be one of those people who fights for the underdog.

As everything changes every hour, just to say I'm here.

In my booties. 

Thursday 21 November 2013

Guest writer time - health update

Apologies to anyone waiting for Charlotte's wit humour and insight.
It's Tim, a blogged about brother, filling in while Miss Bossy Boots (more about those later) is giving the staff at Bury St. Edmunds hospital a run for their money.
She is much better now they've stopped giving her medicine, of course! She had an infection last week and has since then been on a carousel of diverse antibiotics and proving to be the outlier again, reacting strongly against each one. At least I think that's what happen but when you're talking to Mrs. Morphine it is easy to misunderstand some of the finer points.
Her arm remains very swollen and her infection has blown her right shoulder into a weird shape, with more bumps than are strictly necessary on a lady.
She is due to go to Basildon in the next few days, which is very good news as there is obviously a lot of hope for the operation to go ahead next Wednesday.

(It may also be that the staff at Bury are understandably taking any measures necessary to ensure she gets the best possible care, as far away from Bury hospital as they can manage.)

Charlotte is very tired and on a regular drug regime day and night, so will be unable to blog herself for a few days. With limited energy and only one hand operational she will not be replying to the multitudes of well-meaning messages. Thank you for the thoughts, which are wonderful, but too exhausting to read, let alone reply to.

Meanwhile back here, the ranch looks wonderfully tidy. A photo was posted on her Fb page earlier today showing what happens to the Bevan kitchen when the women are not around. Chrissy and I have been able to find things, without moving stuff, bliss.

As for Uggly Lottie, she's very very happy with her new boots…. please note the light's reflection is not a symbol of masculinity, that's pure fallacy.

F Cancer Headquarters

Pic today from Charlotte of "F Cancer Headquarters"

Note biscuits at bedside.

Also, that bed must be very large or Charlotte become very small because I can't quite make her out!

Or, she's escaped. Stay tuned.


Wednesday 20 November 2013

Dear Charlotte

We know it annoys you when you get messages and you can't answer.

No need to answer!

But we'll also try not to send you too many messages, and we'll let you rest up.

A little update

A little update for those of you wondering why Charlotte hasn't been posting:

Charlotte's brother says she is in the hospital resting up and getting pain and antibiotic treatment to prepare for surgery next week.

She cannot reply to mails and messages.

"Thank you for the support, she just needs rest for the moment."

Sunday 17 November 2013

Wind in the pillows

Not much of a blog this morning I'm afraid. I spent most of yesterday asleep. These antibiotics are pretty strong and the lymphodema is causing me unimaginable pain, so I have been mainlining the painkillers.

The girls came home yesterday afternoon, infusing the air with their glamour, vigour and the sweet tang of youth and beauty. It is so lovely to see them and they don't seem to mind the lack of filter one bit. I think it just turns me into a teenager so am feeling rather "down with the kids".

Tim took me to hospital for my IV yesterday. He is so not in hospital mode just yet. He tried to mend the TV, tried out all the levers and hinges on the orthopaedic chairs, folded and unfolded the screens, did a pantomime with the pee pots - yes, of course he pretended to be Princess Leia. Needless to say, we were in and out in record time.

We also managed to get it all done between the rugger and Strictly!!

Tim and I have been googling how to deal with lymphodema and bandaging this morning. Even we have decided that the do it at home whilst watching and instructive You Tube video may not be the best option so I may be throwing myself on the hospital's mercy this morning.

As for the title of the blog?  Snuggled up in my nest with my cup of tea dealing with the consequences of too much morphine yesterday. 

Saturday 16 November 2013

Losing faith

I heard on the radio this morning that doctors and nurses are going to be prosecuted for neglect, - or was it negligence? - and could face a prison sentence. This all follows on from the scandal at Mid-Staffs.

This mind-melded with my current worry with darling MiS. What do you do and where do you turn to when you have lost faith in everyone in the Health Service but you really need help?  Especially if we are talking about a mental health crisis?

MiS has a red flag on her records and the slur of an unqualified Munchausens by Proxy dx on there too. How would you approach your GP for much needed anti depressants and help, if you knew that the GP's practice had been part of this?  Where would you go for help, if you knew that this accusation was flagged and followed you, even if you change doctors? What would you do if there was nowhere to turn without this following you and being front and centre of any healthcare professional's assessment of you?

Also, how would you even begin to explain the last three years?

This is not a rhetorical question. This is a genuine plea for ideas. It is NOT an ask for free counselling  either.

I don't know where to start but I DO know we have to help her get immediate help, get her health records set straight -Ayr & Arran are slower than sea thingies (snails?) that go really slowly - and acknowledge that she is not being paranoid or over defensive but has a very genuine right to feel like this.

It is up to the professionals to rebuild her trust. Not up to her.

But nobody seems to be listening.

Anyone got a megaphone I can borrow?

Fuck Cancer HQ for the day…….

Promoting friends

I am always surprised by the reactions to some of my more random blog moments. For instance, I was slightly overwhelmed by the fierce partisanship on Beards yesterday. Mind you, if anyone had told me the years ago that I would prefer Hugh Laurie with a beard, I would have laughed in their face....

The other one that surprised me was the one on Family. A wide range of big families, small families, wanting more, needing less and how to deal with the resulting paperwork. I did laugh long and hard at Susan Ringwood's darling husband's family who adopt everyone, including the bemused man who came to read the metre.  My kind of family!!

This led me on to thinking about KL, the wonderful ward sister HWISO and I met yesterday. She is automatically promoted to one of those inner circles I talked about in the blog for Alice. Not just because she is patently adored by two of my closest, nuttiest and most fun with their clothes on friends, but because she is caring for me on a professional level and is obviously a highly trusted part of "The Team" !

How difficult for her. I'm sure this is not the first time this has happened and I am sure she will deal with it with all the charm, tact and professionalism she did yesterday

However I am glad I am not inpatient as there is No Way I am either pooing in a pot for her or letting her give me a bed bath.

Just saying

Trouble being a scary wolf!

Back to earth with a bump

So after a cathartic 24 hours with the family, delicious roast lamb prepared by Bundy (despite the World's Worst Hangover) and a middle of the night cup of tea, it was back to the grim reality of hospital appointments. HWISO and I talked in the car about the fact that psychologically, I needed to try and get in a good place for this operation and the resulting isolation that is going to come with it. Regardless of the wonderful offers of compression slings, physiotherapy visits and the very beautiful, Katie, the Occupational Therapist, mere physical stuff is not enough. Thus, running away to Southwold was completely justified.

Apparently, this "infection" is quite serious as far as the operation is concerned, and requires IV antibiotics every day for the next ten days. Mr Shah is quite insistent. He even threatened to make me go into Basildon next week. Like No!  Voluntarily spend time in hospital before I have to? I almost went white with terror.  I am not sure what I dread more - the interminable boredom and restriction and routine of hospital - no nipping to the kitchen for a cup of Earl Grey T 4 am, mid-blog, I suspect. All that overheated air, constantly being on best behaviour, no privacy, no sheepskin rugs in the bathroom, endless sanitation and worst of all, no dogs..

Striking a deal with Miss Aitken - along the lines of I am NOT staying in - I now have to go in once a day to the surgical ward and have this IV done.  It only takes 20 minutes.

I got my port line put in by the stars on the MacMillan day unit and met the lovely KL, a great fun friend (and Ward Sister) of Darby & Joan of moving house fame.

So six hours later I got home. Into my new Fat face fleece men's pull ups and fleecey bed wear top that arrived from darling Bex, a steak sandwich and bed

I am now trying to work out how to fit the infusion in with the Rugger and Strictly and how to avoid the scrutiny of the seemingly clairvoyant Mr Shah. I shall be checking the iPad for bugs and avoiding all doctors, especially consultants. Nurses are much better at keeping things on the straight and narrow and less dramatic. Even if they have never used a port line before.  

Friday 15 November 2013

Vote on the beard


Or no beard?

Same jacket…different trousers….

Not mentioned but much loved

Coco - beloved of my brother, Mickey, keeping guard this morning.

She was a joy to have chiefly because Mickey had worn her out with two games of golf and a long walk.  What i love is that she is still as flexible as a puppy and can do that double-jointed frog-leg thing.

She is also a non-yappy terrier…



So the only reason I nearly turned down this operation is because of the long hospital stay afterwards. Why do I hate hospital so much?


My experience of Tuesday night was exemplary care by the NHS emergency services. We called an ambulance. They arrived swiftly, took copious notes, saw my distress, took me to hospital,delivered me to the magnificent team in A&E.

A&E were kind,compassionate, efficient. My nurse loved using my port to draw blood and the antibiotics and paracetamol delivered by drip started to work straightaway. HWISO finds the lights too bright and the department too noisy so I sent him home. He had stripped off every layer of clothing that was respectable and I feared he might get arrested if he got down to his "Help for heroes" boxers, however worthy the cause.

Then up to surgical ward.  This is where it falls apart. Those gowns. I can't get them on over the port and the shoulder. So I sort of flap about flashing random bits at people. I am not bothered and other people can shut their eyes.

When I get to the ward I am number 4. There is a 17 year old, sleeping the sleep of the young and the just. There is a dear old thing with DVT leggings on and an elderly frail lady with dementia. Who is convinced that the nurses are trying to poison her, have stolen her glasses so she can't see what they are giving her, that she needs help, that someone is out to get her.  The nurses are at present either with me, strapping me up to another drip or with Lady No 5 who has just arrived on the ward

It is 3.15am.

We called the ambulance at 9.45 pm. It has been a long night. It is just about to get longer.

Despite unbelievable patience and some of the finest nursing skills I have ever seen from the sister, this scenario of non-stop fear and screaming was still going on every ten or so minutes at 7.45 am. By now, I had had no sleep for over 24 hours, was in pain, needing to get hold of the Breast Care andOncology  team before the Wednesday Multi Disciplinary meeting at 8.30 and I was pretty close to the end of my tether.

I drew myself up to full height, channelled Mary Poppins and put on my posh accent

"She has not stolen your glasses. She is not trying to poison you. I have been watching all along. Now take your medicine like a good girl and I will keep watching."

It seemed to get the job done and the lady in question was still fast asleep some six hours later when I finally left for home.

I slept on and off for the next 14 hours, waking up to take my pills at 9 pm with Bundy's wonderful Lemon Drizzle cake and then at 10.30 pm for tinned spaghetti on toast and tea with HWISO.  I realised I hadn't eaten all day and didn't want to disappoint Dr R with any diminishment in my glorious belly.

The trauma of the whole experience made me snappy and utterly vile to HWISO who was not to blame but was nearest and loves me. He bought me a beautiful bumble necklace anyway.

He is the best.

Just saying. 

So who was it?

Someone went for a pee. The curse of the middle age parent. So then everyone else had to go. So then we all need a cup of tea. So then it's too hot and we need to turn the heating down. And now it's 3.34 am

Tea tastes better when someone else makes it.  Uhu loves a middle of the night tummy rub. There is a programme about a Syrian singer on Radio 4.

No one is fessing up who went for the first pee.

The joys of family.......

Thursday 14 November 2013

Mind over matter

Despite all protests by HWISO and medical device to contrary and possibly the slowest journey EVAH, I got to Southwold.

Conditional about me doing nothing other than pay for cakes,sign papers for Mum's estate and rest, I am here. Lying in bed. Letting everyone else do everything - hard - with Uhu also recuperating. I have to go back tomorrow for appointments. Bundy has to go pick up Alice. HWISO has to drive me (excruciatingly slowly) and Tim and Mick "have" to try out Aldeburgh Golf Course.

But to have a few hours together has been life affirming, funny, cathartic and not nearly as terrifying as HWISO thought it might be. Even managing to chip his second shot of the day into the back of the groundsman little truck is a source of pride and skill, not a lucky accident.

The horror of hospital is receding. As always, the staff are amazing. The faults are not them but not enough specialist beds for the elderly. But they do get a bed and careful nursing. That's what is important.

There is a distinct nip in the air up here but MJ was right. The smell and sound of the sea are more enervating and restorative than anything.

I still hate cancer but am just not ready to give in to whatever it is throwing in the way of my life just now. I may have to live my life from the palatial splendour of my little bed but I am going to make sure that bed is among my family today.

Pip pip from fuck you cancer headquarters for the day

Best laid plans

Never work out for me, it seems.

Infection, ambulance, IV antibiotics, admitted toward, dementia patient as neighbour, no sleep, many tears, no Southwold, no Tim, no Mickey.

I hate bloody cancer. 

Tuesday 12 November 2013


So I am having a little lie down in my bed, with Radio 4 and the teenage iPad, paying Candy Crush, waiting for HWISO to return from the vet with UHU - he's OK but wobbly - when the phone goes.

On the end of the phone is a distinctly Indian Sub-Continental voice, telling me I have a problem with my "Microsoft" account.  So I take him on. I explain that I am dying of cancer and presently lying in my bed, resting and there is nothing wrong with my Microsoft account and that he is the scum of the earth scamming vulnerable people.

He calls me Ma'am and assures me that I am wrong. Unless I let him help me, my emails will be hacked, my bank details stolen and my life will not be worth living.

"Has he not ears?"I think to myself.

I shout louder.  He just continues to insist that I am wrong and he is my Saviour.

I put down the phone.

Jesus, if that was you, you picked the wrong day….

Just saying.

Official Photos

Acanthus Holidays has just emailed me to say the new photos of our little house are up and they are.

So here's the house in all its glory primped and cleaned for the photo shoot.

And here's a little piccie that I took of my lovely presents from Anthony & Kim and Sophie S.


Families are funny things.  First of all is the one you are born with.  For me, my parents and my two brothers.  Easy peasy.  Then they go and do things like get married and you inherit a whole other step-family - three steps from my stepfather and quite a few from my step-mother.

So that's complicated enough.

Then your siblings go and get married and you inherit a whole 'nother tranche of people.  Then they have children and the competition really begins.  Whilst all this is going on, you marry into another family and inherit them, and their siblings marry and you sort of become part of another family of the "married" family's spouse.

Now it is really out of hand.

The children of the siblings, other family, in-laws, in-laws' in-laws are then placed in the intolerable position of everyone trying to "claim" them for their own particular part of the family.

For instance, in both the Wills and the Bevan family, the male "appearance" gene runs strong.  The Wills boys look like Wills'.  All three of them.  Well, I think they do. I am sure both my sister-in-laws can produce a male relative of the same lean, lanky, shape with blue eyes and that hair to prove me wrong, but for me, they are definitely "our stock".  Interestingly, all the girls take after their mothers.

On the Bevan side, Henry (being the only boy) definitely is a "Bevan", which must drive Alex bananas at times because, of course, she wants to him to be half her. Probably more than half her, to be honest, but physically he is the reincarnation of his father and his grandfather. There is no denying it.

If you then start to add in all the cousins - and on Mum's side there are too many to keep track of - and you get the "oldies" telling you you are the spitting image of your cousin, Juliet, who lives in Australia (and happens to be very successful), the spider's web of connection becomes almost too big.

And then there is the "family" you choose - your really good friends that you make along the way - some from your childhood, your teenage years, your working life, your early marriage, at the NCT classes, school gates, etc.

My oh my, life is confusing.

I think I will stick to the dogs

 Email from the Nicest Woman in The World:

"Pippa............ Pirate’s sister came to stay this weekend.    She was sent to live with my mother due to bad behaviour as you know.  She has put on 1kilo so far!  Which has slowed her down considerably making her less menacing to passing strangers but we still keep her on a lead..........lest she should escape and cause havoc on Dr Marsh’s shoot. !!!!  Meanwhile back in Eye she is a well known face at the window barking at anything that comes close

My mother absolutely loves her!!

I thought you would like this photo of Pippa (in the lead) and Tiggy from a few years ago."


rethink mental illness
Stand Up for Schizophrenia this week
Dear Charlotte,
We want to say a big thank you for pledging to Stand Up for Schizophrenia – it's a courageous move and your support means a tremendous amount. You've made the commitment to spread better understanding of what it's like to live with this condition and you're joining the fight to challenge the misunderstanding and fear that surrounds it.
Schizophrenia Awareness Week (November 11 - 17) is now here - share the reality of schizophrenia with friends, family and other connections on social media.
On  and  this week we want you to follow our activity and Share the materials we post there to spread the word. 
Not on social media? We also have a blog for Stand Up for Schizophrenia and, as the week progresses, there will be materials there to share with friends and family. And we'd love it if you could join us in our fundraising work.
During this week you'll also be able to watch videos and read moving personal stories, hear surprising facts and learn more about the impact of schizophrenia and psychosis. We'll also be revealing the ways Rethink Mental Illness is working to make people's lives better.
Thanks again!
Digital Communications Officer

Filterless freedom

I spent a lot of yesterday angsting to three of my closest girlfriends about my lack of filter, nowadays. I used to be eloquent, able to put my point across without being too offensive, unless I wanted to be, to pause before I spoke and reframe my words so as not to cause offence. I don't seem to be able to manage that just now.

I had a long conversation with Ali, to arrange the deliver of Giles' magic 3 Wood, without which Tim doesn't stand a chance in this very friendly, non-competitive golf game. She soothed, reassured and loved me. So did Tiff, armed with amazing macaroons from Paris. And Hills for tea. Thanks Clan. I get that it is my choice and life really is too short but more importantly, thanks for listening and, most importantly, laughing uproariously. 

Glad to know that even when I am being offensive, I am still funny….

Overnight Kvetching

Firstly HWISO doesn't read the blog. His choice. Ringing up to discuss stuff on there with him only confuses him. 

My constipation problems are being handled medically now. Anyone else who has had this morphine related problem will understand what I mean and I am fine. Just windy. As Tiff can testify. Me and Uhu are very happy living in a cloud of noxious gas. I always wanted to be a lab.

Simon, ringing people up at 9pm for a chat, especially farmers, is not going to get a warm and friendly response.

A whole tub of Hagen Daaz salted caramel ice creams for supper is a perfect balanced diet. 

If you add the last three macaroons that darling Tiff bought back from Paris, it actually constitutes heaven. 

Uhu has to have an operation today on his bottom. Please everyone wish him well.

Monday 11 November 2013


Cousin Ann's Norjacks,, Toby and Hati, and her amazing garden

The naughtiest dogs in the world…….

Heathcliffe, your Mummy is naughty..

So scrolling down my Facebook wall, can I resist following Jennifer's link to Word Porn?

Any website that heads up with one of my favourite words

gets my vote.

Then, I found this and can hear all my Hutton relatives immediately thinking of Uncle John…

So that's my morning done. I will be listening to the Grayson Perry Reith Lectures whilst cruising through.


After a lovely middle of the night chat with Colleen (here's the link to the first one, darling - Seamus and Beowulf), I dozed off about 4 and woke to this view, this morning.  Welcome to an East Anglian morning sky.  It bought me back to my conversation with Cousin Ann on Saturday.  Why do I blog?

I blog because I like writing. I blog because it is cathartic for me. I blog as a diary for my husband and my children. I blog because I choose to share an experience of life which is less common among my age group, than among my parents' - ie dying. I blog because otherwise I would be on the phone constantly updating people. I blog because people then have the choice as to whether to read it or not. I blog because people seem to want to know stuff and are afraid to ask. I blog to raise awareness of Eating Disorders, to dispel myths and offer hope. I blog to amuse. To promote. To share. I blog because then I don't have to repeat myself.  I blog because people seem to want me to.  I blog because I can say stuff on paper that I can't say in real life. I blog because I can type left handed but can't write anymore. I blog to say thank you. I blog to help other people. I blog to help myself.

I don't blog because I think I'm interesting, or a writer, or to promote myself. I don't often think about what I am going to blog. It is just random stuff that catches my interest. About what is immediate to me. 

I don't blog for advice, or reassurance or attention. I hate the attention. I love the gentle hugs I receive from my friends, and the kisses and the odd emoticon.  Not because I crave them for my ego, but because they are meant so well and good friends don't need to say much.

I blog because I need to say stuff and I don't want to burden one person, or rely on a small tranche of people for support. That would make me feel very claustrophobic and restrained and make me button up my emotions even more. I don't want to be smothered by a small group of supporters. I just want to say what I want to say when I want to say it. I need to sometimes get it out of the brain and into the big wide world, without any interruption.

Sunday 10 November 2013

Hungry anyone?

For my sister-in-law Bundy, here are some pictures of the Two Magpies.

Just in case you were worried about what we were going to eat.


So I went into Colleen & Clare, for a change, to find some Ugg boots.  Mine have lost the grip on the bottom and despite HWISO's best attempts with his Swiss Army knife, re-scoring them has not solved the problem.

My feet are increasingly numb and cold.  I wear two pairs of socks, even in bed and made the mistake of wearing "proper" shoes the other day to visit Bury St Edmunds.  I had to soak my feet in warm water for a long time to get the feeling back and am terrified of scalding myself, as I can't feel the temperature.  My toenails are beginning to die back (Nice Huh?  The stuff no one tells you about cancer!) and when HWISO said he would buy me a pair of Uggs for Christmas, I not only jumped at the chance but argued my case for having my present early.  6 weeks is a long time to wait and I know I will get full use of out them now.  I even said he could have them back on Christmas morning and wrap them up for me.

I tried really hard to get some long ones on but, one handed, socks are a nightmare - boots are impossible - so we have settled on the little ones with buttons on the side.  Which they don't have in my size but are on order so I can pick them up, hopefully, when up this week, with the Brothers.

Whilst in there, HWISO was "just looking" at the men's coats.  Now I have always thought the Aigle was pronounced A Gull - that's how any right thinking English person would pronounce it.  But Non, Non, Non, it is pronounced Eye Gla. 

They make nice coats though...


Having never been a drug taker and positively stoic about pain, along with the rest of my family, this new introduction into the world of Morpheus is a strange and not entirely pleasant one.

And yet, it is a seductive one.

I remember discussing drugs with HWISO and Dr W, including morphine, and Dr W and I staring wide-eyed at HWISO when he asked about me becoming addicted.

"What does it matter?"

So I am now, I think, officially a morphine junkie.  My patch fell off in the shower - it was due to be changed this morning - and, as I haven't taken any other kind of pain relief for a couple of days, the resultant wave of "fingernails on blackboard" pain literally knocked me sideways.  I went bleating to HWISO with a patch.  I love him but tenderness and noticing distress are not his strong points.  He was "just doing something". you're not anymore.

So the full tsunami of my pain is numbed and I have to remind myself not to be a bird with a wounded wing, curling my hand protectively beneath my coat but to keep it moving, keep the blood flowing, despite the pain, to keep it alive.

The edge of my world is also numbed.  Visually the corners of my eyes no longer catch the details.  Mentally, neither does my mind.  The emotional filter is going and I have been reduced to actually crying and ... Wait for it...expressing my emotions recently.  I have stopped being afraid of not putting other people first. I used to automatically compute other people's feelings first.  Now it is not that I put myself first, merely that the edges are blurred and the details are too fleeting to catch.

It is not entirely unpleasant.  It is not entirely comfortable.  It is not a me I am comfortable with but it is the new me and I don't suppose there is any going back.

Morphine me?  Or bad Dr Who baddie?


Talking with My mother in Scotland yesterday afternoon bought me up short and I felt sad.

Her daughter, the one so badly treated by Ayr CAMHS, has been admitted to the wonderful Yorkhill in Glasgow, for observation. She came home for weekend leave this weekend and life fell apart for poor MiS, with high anxiety, food refusal, meltdown from sibling and a general mush up. Eventually, after a chat with me, the hospital, supportive "been there, done that, it passes" emails from the amazing Feast UK team, the crisis passed.

There will be another. And another. And another. They will get easier, shorter, less threatening and eventually morph into just plain grumpiness. MiS will find these crises easier to manage, will stop reacting to the anxiety with anxiety, move on from this hellhole, get a life back, watch her daughter thrive and grow.

Just now, as the team digest the ridiculous defence by Ayr & Arran NHS of their non-treatment of the child and thinks about the next option, I had forgotten that on the end of this pile of paper and emails and self-congratulatory pats on the back for how well we have done, how well presented our complaint is and how strong our case, there is a mother who has been to hell and I haven't quite pulled her out yet.

I reread the Complaint Letter answer from Ayr & Arran and wondered how they can try and justify "effective and on-going treatment" by claiming that a child, who had presented to them as falling from the 10th percentile for weight in her age group to 0.4th percentile, was receiving such treatment because, under Ayr CAMHS, she hadn't gone any further down the percentile for two and a half years.  Really????

I have compared recovery from an Eating Disorder to the Chilean miners before. Can you imagine being strapped in that capsule and being hauled up?  My idea of hell. All that inky blackness, suspended on a thin cable, being pulled up by some unseen person - your life in their hands stuff - wearing sunglasses, no control at all. But yearning for sunlight and freedom.  Every second of that journey must feel like a lifetime and a millisecond at the same time. I think it feels like this for MiS too.  And I forgot that for a few days - that there is a real, loving, terrified mother in the middle if all this and that it is just the beginning for her.

Throwing starfish sounds all very worthy. I need to remember to throw them far enough. 

Fuzzy? Me?

I finally got round to reading the notes that came with the morphine patches. It said that if you must drink alcohol (????), please be aware that it may make you very sleepy.


I tried this out at lunch time with a quarter glass of red and, guess what?  They were right.  I slept quite soundly through the incomprehensible rugger - the one where they don't seem to get dirty but are delightful to gaze at anyways. I do like the "new kit" these rugby players wear and don't miss the flappy stripes of the Will Carling era one little bit.  As a dying middle aged woman, I can also add I was slightly wide eyed at the assorted colours of the "jock straps". They no longer seem to be the off-white which I remember emerging from the depths of Tim and Mick's games bags at the end of term. There was definitely a flash of Kingfisher blue yesterday.  Or maybe that was the morphine/wine combination.

(On the note of the Brother's games kit, I do recall Mum once using a long handled wooden spoon to tackle the bottom of it because I think the old woollen games socks we used to wear had actually started to disintegrate into mush......)

Anyways, this has put me in a dilemma. I now yearn for an early evening glass of wine but am afraid I'll fall asleep in Strictly.

Decisions.  Decisions.

Morning update: had half glass of wine, got through Strictly. Slept like a log. Got a hangover. Hmmmm

(Me in Jamaica, asleep, 2011!)

Women of a certain age

I had such a lovely conversation last night with Cousin Ann, which brought up so many points I don't know quite where to start.  Sorry not to have this up for your early morning cuppa, Ann.  Wifi problems.

Ann, a lady of a certain age - I'm sure she won't mind me saying she's definitely a pensioner - has bought herself an iPad. She was saying she was enjoying it but sometimes wanted to throw it across the room in frustration.  Ann, iPads are wonderful but capricious. Like teenagers. Most of the time, they are great but every now and again, they do something so illogical and time-wasteingly destructive, you wonder why on earth they were invented. Or, as my friend Aussie Lynda says, it's one of those moments when you realise why some mothers eat their young!!

I admire Ann for her enthusiasm to embrace new technology. My mother loved her computer and even though my Dad claims his is "coal-fired", his scanning skills appear to outstrip mine. I love the Grannies exchanging email addresses and the fact that Parish minutes and The Museum Committee notes arrive by email nowadays.

Then, there is the next group.  Those who embrace technology willingly and happily but, when they discover one particular "techno toy" want the world to stop. This is their comfort zone.  Two of my favourite men, Tim and our lovely Land Agent, Mike, made me laugh a few years ago as they were BOTH at exactly the same time, trawling EBay for spare batteries for their (same model!) Nokia ancient but comfortable, phone. They had some success but did eventually cave and move on. Love them both for their intransigence and loyalty.....

Then there are those who utterly refuse new technology. They will have a mobile in the car for emergencies.  There is no charge in these phones of course and are totally useless but are there as a sop to their children.  These are the people who have not got used to the death of Teletext, not understanding that there is 24 rolling news and even a few channels dedicated entirely to weather!

For me, I am with the "Ann" contingent but do have sympathy with the Nokia crew. For the last group, I do understand that learning something new is scary but the world is round. Really, it is.

What is this feeling?

HWISO and I had a busy day yesterday with Mark, the carpenter (misnomer but just how he is known.  He is an amazing handyman, builder, plumber, craftsman married to a qualified electrician!) and spent the day doing the stuff that takes him an hour and would take HWISO all day, cause him stress and require me to run around admiringly finding drill bits.

The house is now ready for renting and we spent an evening yesterday that seemed like a fleeting dream from a bygone age - relaxing - no long list of things to do, no nagging whisps of emptying dishwashers or putting on another load of washing, no lists of what has to be done tomorrow, no worries. No wandering into the kitchen and shuffling piles of paper, knowing that they need dealing with, wondering if there's enough milk until Monday, grabbing piles of washing on the way upstairs to be "sorted" in the morning, no fighting the dogs to get to the Aga, no checking the computer stats on the blog on the way past the office, catching glimpses of cobwebs on the ceiling when the lights come on or any of the other minor and major random nags that cross my mind at home

What was it, this intangible nimbus I couldn't quite grasp?

Ah - no responsibility 

Saturday 9 November 2013

You'll never guess....

Odd conversations

I went to get my hair cut yesterday. It was becoming a little too much for Em to deal with. So it is now very short and curly and dark grey. The whispy white, catching the breeze like a coxcomb, is now no more.

For a Friday afternoon, it was quiet in there. Southwold is. The sort of place where ladies of a certain age get their hair "done" for the weekend. Mum used to love it.

I hate the hairdresser and hated yesterday for exposing my double chin and puffy, morphine dilated eyes but it was warm and friendly. I explained that washing my hair was going to be impossible and we settled on a spray bottle.

As possibly only I can, I ended up having a conversation with the customer on my right about wiping your bottom with your "wrong" hand. Her husband had broken his wrist the day before and he had been moaning just that morning..

"Send him my sympathy." I said.

She twinkled at me.

"How do you suggest I bring up the fact that I discussed his bottom wiping skills with a stranger in the hairdresser?" She said

"You'll think do something." I said

Changing rooms.


Now I get it, Em.

I get why you were happy in this little room. My room next door is all very big, posh and grown up but this is definitely the womb room. I have pulled out the guest bed and made the room into a double.  I can't get to the cupboard. I can't get out of bed without serious threat to the skull because of the bookshelf and the bin HAS to live in the corridor.

I am using the small corner of carpet as a repository for shoes. The other half of the bed is all my clothes. The bedside table groans with the radio, the clock, the light and the water and one lives in constant fear of turning over and being hit with flying metal, whilst being ignominiously drenched.

Choosing what to wear will not be a problem this morning. It's whatever is nearest. I have suspended a soft jumper and a red sock over the lethal corner of the shelf to remind and warn. It works for me. But not for HWISO. So he's not keen on coming in

Which is fine

Coz he doesn't fit.

I am Never Sleeping in Any Other Room.

So there…

Creeping round the inevitable

So after an exhausting week of stress, driving through terrible rain down the A12, seeing doctors, having tests and assimilating information, we fled to Southwold for a bit of peace.

We would be hopeless refugees, really we would. So terrified of leaving something we may want behind, we forget things we might need. So we got here at lunchtime. I was long on knickers but short on anything to actually eat!

I have been trying very hard to not "take over" with this house. The temptation to put my stamp on it, infuse it with my essence, leave it as more than an echo of my brief time here is almost overwhelming. But this must be HWISO's house. His little cave. His project. So I bite my lip and quietly bless my handicapped arm as, in other circumstances, I would have changed and jiggled and moved his carefully thought out groupings of pictures. Without asking for an explanation or noticing.

Don't get me wrong. He has done a great job. He does have an over cluttering tendency, which means that lots will have to be "put away" before the lets arrive but this is a small price to pay for his comfort.

So today, I will sort the stuff to go home again, leave stuff for our week next week and leave the pictures alone.  Except maybe one or two

And get some lunch in.

Friday 8 November 2013


So my blog yesterday got me into a bit of a HooHah with a bit of misunderstanding. 

My point about the ruckus at Colchester was to highlight a couple of points:

  1. the "target" thing: it is unfair, unjust and contrary to everything I believe in to bully junior staff into falsifying data to protect the hospital (and its funding?);
  2. all levels of staff complaints should be listened to;
  3. cover-ups are inexcusable;
  4. Unison did a great job here (but let's not talk about Grangemouth, eh, Jo?!)

I also wanted people to understand very clearly: 

  1. that a two or three day delay in chemotherapy does not kill people; 
  2. talking about the Royal Wedding delaying chemotherapy and contributing to the death of a patient could be very misleading. 
  3. It could also result in a flood of phone calls from concerned patients and relatives to the NHS helplines that were unnecessary

I am in no position to comment on this situation except to stand up for the support staff, who deserve a gold medal, considering the bullying and fear for their jobs and to correct incorrect information.

Whilst I have huge compassion for the lady who lost her Dad and understand Jeremy Vine's desire for good radio, I nevertheless feel that it could be a highly damaging situation.


So I was in a lot of pain (crushing arteries does that for you!) and really grumpy yesterday morning (sorry, Sophie S but love the present!) - Also truly sorry, HWISO. You are a saint - and then the morph patches and a revelation of what life used to be like. Phew. The trick now is not to do too much!

My other kvetches yesterday included a long rant to Laura about my recent photos. I am not vain. Never have been but I don't want to be remembered as an old woman (I am 48), with grey hair, a puffy face and a beige cardigan. So I "virtually" wept about it and she changed all the photos on the Helix site for me and I love her for it.  Now, that's what I call a real friend. She did try the "but you're beautiful" thing, by the way, but got, within about 5 seconds that was not going to work. She knows me too well. Thank you, darling one.

I also kvetched about the reply letter from Ayr & Arran NHS Trust that my Mother-in-Scotland received yesterday. What a load of arse covering tosh. I will be going through it with a fine tooth comb and it will deserve at least one whole blog to itself.  Just one question though

"Since when does attendance at appointments constitute ongoing, effective treatment?"

That opens the floodgates a bit. I have attended almost all my appointments and am receiving ongoing treatment.  What do I do about the fact it has not been effective? There I go again - me, me, me. At least I have a diagnosis and my cancer is not being blamed on my magical thinking and over-anxious mother, with an unconfirmed (and spurious and libellous?) diagnosis of Munchausens by Proxy. 

You have been warned.

Nelly has received an equally flaccid reply from West Sussex NHS. A Flaccid Flood (AFF) is quite a good way to describe these letters. A lot of useless hang-wringing, no apology, a lot of dilution, no concentration and a huge dirty mess left for someone else to clear up.  

Obviously a busy weekend of Ranty Red Marker pen coming up. RM, you around?

I shall do it whilst trying not to cry my way through this interview - for my non-ED friends, a brilliant round up explanation of brain disorder, not a choice, treatable illness thing. I am sad I wasn't well enough to do it but delighted with the way it turned out. I would have never been so articulate or calm.

Last but not least - and blame the AFF letter from West Sussex CAMHS for this - a bit of a rude inside joke from the marvellous ModSquad. We talk a lot about food and exchange receipts. FM is still recovering from my "Hot Chilli Vodka" one, but that's another story. It also exposes our cross-cultural "two nations divided by a common language" blips.

"Add a knob of butter."

Cue hysterical laughter, rolling on the floor and inability to communicate other than in expletives from across the Atlantic and blank-faced bewilderment from the UK.

"What do you think I mean?"

"Erectile dysfunction.."


Circles for Alice M


I have found the circle thing.  It is actually called the "silk ring of kvetching" and I have drawn my own circle. Suggest you do the same.

So here's how it works.  I get to say what I like to who I like (and I have been!) and it works outwards from there.  HWISO, the girls and the brothers get to say/ask/request/scream at the people in the all the circles outside of them and so on and so forth.

What does not happen is the bad stuff comes the other way.  Particularly liked the phrase "lookie loos" which I found on the internet, whilst searching images.  What a marvellous description….


Thursday 7 November 2013


So Lisa, the Pain Queen, has been nagging me about getting some morphine patches and today I gave in and went to see my doctor.  To be honest, I had become like the old lady in "To Kill A Mocking Bird", whom Jem and Scout had to read to until it was time for her next dose of medicine.

Things are well spacey now and then these arrived and I am overwhelmed with them.

Meet Ruby and Pedro.

Thanks E!