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Thursday 31 October 2013

Purple's photo plus more

That I have finally downloaded.....

The sky in Southwold on Tuesday morning

Two Magpies window - who would go to Costa?

Bad language alert but be kind..

But well worth a watch for all of you who have been upset by Idiots on the Intrawebz. (Thanks, Red)

As some of my dearest friends have been made whilst commenting on random misinformed articles on the intrawebz, (and yes, Katie, I AM talking about you!), I find this kind of troll especially sad.  

Someone else was asking on FB yesterday about what to do with friends and acquaintances who were "unable to cope" with mental health issues and did not want/were unable to understand the difficulties of someone who lives with OCD or an Eating Disorder.  My reply was as follows:

I spend a lot of time telling idiots that they are missing out on meeting some of the most interesting, empathic, intelligent and kind people in the world because the idiots are boring, suburban, introspective and selfish. Then I hold my head up high as I am one of the former ya wanna be in my gang?

Having had two really bad bouts of clinical depression and dealing with mental health issues in both HWISO's side of the family and my own, I am not ashamed.  I admire those who say they just don't understand it but will continue to try.  I admire those who try to understand it.  I admire those who come out of the woodwork and admit to their own mental health problems.  I am an advocate of the Stop the Stigma campaign.

My mum always said that the worst kind of person is the world was someone who was unkind.  I subscribe to that.  Kindness is probably one of the greatest qualities anyone can have.  With kindness, comes good manners, empathy, sympathy and makes you an all round lovely person to be with.  

So the task for today is to be kind.  You will find it reaps its own rewards.

Quick News Round up

Lying in bed, cruising through Facebook feed, I was amused to see JoBob the Red's status about how she was

I'm in Scotland, drinking rhubarb vodka cocktails and planning on making cherry clafoutis. My career as a Northerner is over isn't it?

Yes, Jo, it is and then she admitted to wearing fluffy socks!  I can now call you a "Champagne Socialist" (snigger!).....

To counter this, I found this article about red wine.  As I am already dying (probs from too much wine), I thought I'd go for this option, even though my cancer is Triple Negative and nothing to do with oestrogen.  Word to the wise: Stock up now, as my dear Australian friend, Lynda, then posted this.  Yikes!  My cousin, Emma, is busy blaming her friends - like she has nothing to do with this!

News from ED World.  Well, there is a sanctimonious woman in North Dakota, USA, who really needs an Eating Disorder 101, an injection of compassion and someone to push her off her self-build pedestal.  She sounds like the soul of kindness handing out letters to children, whom "she" views as obese when they come Trick or Treating.  My particular favourite quote was this

When asked by the hosts of the show why she didn’t give out toys or stickers instead of candy, the woman, who identified herself only as Cheryl, said she didn’t want to be the “mean lady” in the neighborhood.

I've got news for you, Cheryl - the World thinks you are the "mean lady"of North Dakota, if not the U.S.A. - just saying.

On the upside, I noted that Chevese Underhill Turner, the wonderful BEDA advocate, is having a bit of a melt-down because her children are "playing nicely together".  I'll swap you!!!

The House of Mutt posted a load of photos for me on Facebook.  Thank you Sarah.

Lastly, for all of you who think that photoshopping is harmless and doesn't really change perceptions, here is 37 seconds to watch.  Please watch it.

Wednesday 30 October 2013

Rachel's gotta brand new bag

and her mom is Well Jell!

Artisan made in the village next door.  Entirely unique.  Beautiful colour.  Beautiful bag for a beautiful girl.

Yet another reason to go and see Tim....... 


Today I am very grateful to darling Colleen. I have got tonsillitis and am feeling very sorry for myself. I have retired to bed attired in the original soft Fuck You t-shirt, my soft pink spotty pj bottoms with the funny inseams that are doubled sewn and a cashmere cardi. Soft socks and seven pillows, a shed load of pills and Woman's Hour.

I do feel wrapped in Great Pacific North West love. Just saying.

To cap it all the post brings a present of love from PP.

I love Around the Dinner Table peeps....

A small world

Tim and I had our usual Sunday morning hour's chat.  Tim has banned all intrawebz use on Sunday mornings, which includes him and therefore likes to mimble on for an hour or so, which is lovely.  I didn't realise that the lovely Rachel is going home this week.  I think he will miss her company and youth and exuberance, as well as her photos and her wonder at Italy.  He suggested buying her a pair of shoes as a thank you present.  I said a handbag.  I think I'm right.  His part of Italy is the shoe and handbag manufacturing capital of Italy.

It is a testament to the remarkable world of ED parents that someone in the USA who I have never met is happy to send their precious older daughter to stay with my brother, whom they have never met, half way across the world for 6 weeks.  Bonding over a sick child brings about a closer relationship over the internet than you probably have with your next-door neighbour.  Weird?  

As I begin to wind things down and am finding typing harder and harder, due to the loss of feeling in my right hand and my impatience with only using my left, I hope that people will continue to connect across the oceans for many years to come.  

I am also hoping that the Helix Project will come to fruition and that we can get going soon on collecting all that blood - Halloween seems an appropriate time to discuss this!  To find out more, please read this and this excellent blog and note that the UK numbers are not in there just now.  Please sign up!

Lastly a little bon mot from the wonderful Susan Ringwood of Beat

Where does one start and the other end?

Uhu and Trouble after their walk.....


Last blog for a while on Southwold but I just wanted to show you all what a good high street looks like, because I suspect you've forgotten

Firstly interiors of Collen and Clare, a clothes shop you can actually SEE in and get round and no indication of using every available inch of floor space to sell.  Claustraphobics welcome here...

That handbag!

And just a big closer up but slightly wonky....

The Ice Cream shop - where they sell dog ice cream called Beaches and Cream

Serena Hall Art Gallery

The CHEMIST - how different is this from Boots or Superdrug?

Wells, the photographic/computer/CD/Book/Present shop

The Greengrocer - Crab Apple.

Or you could go to Tescos, of course, with their inspiring window...

Or WH Smith?


Tuesday 29 October 2013

Autumn morning

As winter creeps into the edges of day, it is hard to think that I may never see summer again.  I woke this morning feeling mouldy and thought I was running a temperature. Half of me was relieved because it meant I could stay here and not do chemo tomorrow. It is the chemo that made me so I'll last time and I worry that it may finish me off early this time - all those midnight terrors, Mrs Crispy!  As we have no electricity at home, it is a bit of touch and go whether I should go home to a cold house.

The other half of me wants to carry on fighting. I just wish I had a bit more energy to do it. However, we shall see what the blood test reveals tomorrow and go from there. At least the oral thrush/ steroid combination seems to have sorted itself out and I can now stick out my tongue, assured it is slightly pink and no longer resembling a tomato long forgotten at the bottom of the vegetable drawer in the fridge - white and furry, with a hint of pink....

I have these thoughts until I see HWISO in the morning and then I know I shall carry on as long as I can, just for the pleasure of his sleep crumpled face and scowl in the half light of an autumn morning.

Slowing down

Beautiful but chilly morning and our last in Southwold for a while. This necessitates me having a fuss , throwing everyone out of bed and frenetically washing the sheets and towels.  HWISO is "on duty" and keeps nipping out to his "shed" (the garage) to report on the amount of time left before the next wash is due.

We need to go up to town to trawl the charity shops and The Vintage Market for mirrors, a chess set and some books, as Acanthus are coming to photograph the interior later in the week. I have sent Em to the hairdresser to have her highlights done to keep her out of the way, whilst the olds fuss.

I have been back on the morphine here which has enabled me to sleep really heavily for six hours and then doze for another two, but makes me terribly thirsty. I think that poor Em is going to be so thrilled to get home to her attic bedroom and not have to listen to her mother wandering around, rambling on to the dogs and having endless pees all night.

I have been doing a lot of thinking up here and think the time is drawing near to give up the majority of my advocacy work. With the crippling pain and the prospect of various operations, I can no longer continue to give people the concentration they deserve.  I shall continue use to support my Mother in Scotland and Nelly as long as I can.

On that note, at least Nelly has had a reply from West Sussex CAMHs. A totally inadequate, nonsensical and full of PC crapola speak reply admittedly. It will either have to go to a lawyer or the Ombudsman now, especially as one reply to a question posed to the head of the Trust came back with some PR spiel, cribbed from the website.  Really???  You think you can really fob off the fact that you have nearly killed a child with your negligence with this?

Ayr NHS Trust is pushing its 20 working days to the limit. They need to reply this week. Just saying. H is in treatment and dangerously ill, according to the specialists. She has been denied treatment for so long that they are still worried about reseeding syndrome some three weeks in. I hope both the psychiatrist and the psychologist are taking heart from the frankly disgraceful compensation case of Sharon Sixsmith at the moment.  They seem to be good at spinning a web of non-action and blaming everyone else and refusing to take any kind of responsibility for their negligence. Perhaps they think they can get away with it?  I hope not. There was a lot in the news yesterday about the NHS having an obligation to own up to their mistakes.

Still angry and not entirely given up. Just saying. 

Monday 28 October 2013

Winding down

It is strange to be so peaceful up here and have time to relax.  Somehow at home there is always one more thing to do, one more pile to move upstairs, one more load of washing, one more comment to make.  This house is so small that I have surprised myself by remembering what it is that I have come into another room for and even managed to remember why I was clutching a white t- shirt, having carried it all the way downstairs. Such a nice relief for the chemo brain to not feel entirely lost at sea for most of the day.

It has made me realise though that I really need to slow down more and stop doing all this stuff.  I now realise that there is no way I will make the Carers Conference in London on 19th November. Two hours without a rest in a bed is all I can manage and I am not sure that I really want a bed in the IoP just yet....

I had a lovely email from RM overnight - just to let you know it was perfect and, frustratingly my lovely Monday photo from Purple, which I can't download on my phone.  Sigh. It will have to wait until I get home.

I am missing the ModSquad and wanting to chat to Laura and haven't been able to read the forum.  However, I have read the newspapers, spent time with my children, annoyed the heck and tarnation out of HWISO and really rested. There's always a good side.

10am update

We survived the storm with two fence panels down in the garden. This means HWISO gets to play with his electric drill AND bind-a-twine.  Alpha male heaven.

5am musings

So the hurricane is just getting here to the East Coast. The wind is fierce but I suspect worse is to come. Em was being very cynical last. Night about "a little bit of wind". HWISO and I smiled gently. We've been here before.

In 1987, we really weren't geared up. A very different world. No Intrawebz, no mobile phones, no Twitter, no underground power lines or telephone lines. The only way of getting news was via the radio.   Says she sitting in bed listening to the World Service where our little hurricane is last on the news bulletin, long after the US phone stuff in Spain and Japan and Lou Reed.

It took HWISO and the family three days to get out of the house and to the local village. However, at the farm the cows still got milked and the milk lorries still got through. I rather like the fact that the cows and the milk took priority over the "folks in the Big House".  

I suspect we won't be facing power cuts for weeks on end and I hope that we don't lose as many trees. We planted thousands of trees for the next ten years and I hope we don't lose any of them. Or the Plashwood oak, which is in the Domesday Book.

I have made HWISO promise not to go down to the sea with the dogs this morning. As even Trouble is reluctant to go outside just now, I don't think it will be a problem. However HWISO does sometimes get that whole Bear Grylls Man vs. nature groove thang on. I shall go and sneak some lead in his wellies (which the teenage iPad keeps autocorrecting to willies - snigger!!)

Sunday 27 October 2013

It's not all about you unless you think it's not

Taking it personally

I had a lovely chat with C and MJ the other day about dying.  It is weird how comforting it is to talk about it and to tell my two dear American friends not to mourn me just now, but wait till I am gone. I also sent them a virtual "stiff upper lip" but that did not seem to work. They went for the Sauv Blanc and tissues option. You gotta love them!

However, everyone reacts differently to me and not in the way you'd expect.  Some are in total denial and think I am going to "get better". I am not. We are doing all we can to stave off the spread of the cancer because the spread is what will kill me and we were doing quite well for a time. The eribulin gave me another three months. That is all. It didn't cure my cancer. The operation and the new chemo are for Quality of Life. They are not a cure. I am grateful for every day.

Some days are good days. I go out to lunch or have people over. Other days, like yesterday, I just spend all day in bed. I often don't know how I will feel until that morning and my friends are wonderfully flexible. However, just because I can go out to lunch with you -or can't - does not change the prognosis. I am still dying.

What I find hardest - and this is the bit that everyone who thinks is written about them, should understand is NOT and everyone who thinks this is written about someone else should take a long hard look at themselves - is the people who project their own fears about them and their loved ones onto me and my family. No, I don't want your advice, your experience, your doctors. I don't want you to tell HWISO what he should and shouldn't be doing. No the girls will cope in their own way and don't need you to tell them what they should do and how they should react. Your life is not theirs. Your fears are yours and should not be projected onto us.

Take a leaf out of Lottie's book - a gentle hug, a smile and a Keep Calm and Carry On. Or Cousin Ann, who continues to just be her. Wonderfully. 


I had a crying day yesterday. It was just was.

I felt very sorry for G's friend, Lottie. She hasn't seen me since the summer and I have transformed into puffy faced, hairy lady. To add insult to injury, I had swollen red eyes, blotchy face and a severe red nose.  As usual, she didn't turn a hair, hugged me tight on the left hand side and smiled.

I retired back to bed with a cup of tea and more tissues, felled by her kindness and equanimity. Bless. 

Clocks Wine and Boobs

Back in Southwold, hunkering down for the great storm due in tonight. It feels funny to be not at home sorting out candles and torches for the inevitable power cut and making sure that we have enough milk in for a few days. Living in a town has its advantages!

I am back on the teenage iPad so excuse the lack of photos, links and odd weird autocorrects.

The clocks changed this morning.  I always laugh because it is my father-in-law's least favourite day of the year, because his meals are an hour late!!

I was thinking a lot about Anthony and Kim yesterday. We had lunch in The Lord Nelson, where Anthony was told that Mungo, THE Welsh Springer was more welcome than he was and then opened a bottle of TattyBogler in his honour last night - that was the one we all liked before you and HWISO decided to try the other two. Just in case you had forgotten.

So this plan that we have come up with for the shoulder is really radical. At the moment the cancer is beginning to severely restrict the blood supply to my right arm. I am having to do a lot of wiggling and movement to keep the hand from turning white and have pins and needles most of the time. We need to do something radical - it's the cancer or my arm and right now I am having very little sympathy for the cancer.

So the plan is to try and persuade the pioneering plastic surgeon in Chelmsford to have a go at taking some out and relieving the pressure on my veins and nerves and packing the hole with muscle and other tissue.

Of course this means I need to keep the weight on, despite Tiff's kind offer of some of her boob. Such a hardship for me, especially with all these delicious food shops here. Bearing this in mind, I went to the Two Magpies yesterday and bought one of everything I felt like. Now I just need to decide whether I want choccie croissant, plain croissant or toast for early morning snack.

Of course HWISO and I forgot about the clocks changing and Trouble's stomach doesn't understand. He is pacing round the kitchen, carrying a cushion and completely uncomprehending when I point at the Dayglo green kitchen clock, purchased from the charity shop to tell him it's still not yet 6am......

Saturday 26 October 2013

The Nitty Gritty

Probs not for my Dad or anyone else squeamish.

Cancer is crap.  Terminal cancer is even more crap.  That kind of goes without saying.  What piles the crap on the crap is the medication and the side effects.

So, I had got myself into a position where I was having chemo, which is tough on the liver anyway - all that poison, taking loads of pain killers - ibruprofen and trying to not take too much paracetamol, which is really tough on the liver and, occasionally morphine, to help me sleep.  The resultant constipation was AWFUL and I tried everything.  As Trots, from Colleen & Clare, said to me last week, the stomach issues involved with cancer treatment turn perfectly respectable English women into ageing labradors, farting and burping and rushing to the loo with a pained expression, almost overnight.

All of which is very undignified anyway, but add the swollen stomach, the obvious discomfort and the rattiness and you get the general picture that I am not entirely pleasant to share a long car journey with, if the windows are shut.

As I said, cancer is crap - literally and figuratively.  I don't think Colleen had any idea how apt the last four words would become....

Reading and Roses

I have been out and picked the last of the roses in the garden as we are due a tail end of a hurricane on Sunday night. There is nothing more depressing that stripped rose bushes.

A long conversation with R and others last night about how none of us are really able to read a book anymore.  R and I are fellow listeners to Radio 4/World Service all night long and hear, fuzzily, at 1 am about orchids fertilisation or, this morning, the World Football round up.  I now know more about football in the Carribean than I want to, I think.

I miss reading.  I used to wander around the house with my head stuck in a really good book and once took the day off work to finish the new Jilly Cooper (Rivals!).  I have been a bookworm all my life and used to haunt the library in Bury St Edmunds, reading things like Jean Plaidy and Georgette Heyer.  I moved on to other stuff in my teens - Lordy Me, I was pretentious at one point - my "Cement Garden" carried front and forward round school, so everyone could see how clever I was.  I used to read the bleach bottle in the loo, if nothing else was available...

Nowadays, I takes the teenage iPad and play Solitaire or Bridge, whilst listening with half an ear to the Radio, until I fall asleep.  I usually wake up about 2 hours later and turn out the light.

Sometimes, in those dark and scary moments at 3 am, I want to weep that I will probably never read a book again.  Then I think that I have been privileged enough to read more books in my lifetime than most other people and I should not be sad about not reading more, but happy I have had the opportunity to read so many.

This attitude drives Laura mad, I know, but I just can't help myself.  Fifi had the poem below on her Order of Service at her wedding and I have never forgotten it 

“Don't be sad that roses have thorns.
Be glad that thorns have Roses."

A piccie of one of my roses.

Friday 25 October 2013

Animal Soup

Janet Treasure uses a lot of animal analogies when describing carers.  I know that I was the original model for the terrier.  Today I am feeling a bit more Ostrich about my own illness.

The ostrich
Sometimes family and friends take the "ostrich approach" when dealing with the eating disorder. In the midst of distress there may be temptation to ignore or underestimate the impact of the eating disorder on the person with the eating disorder and on involved carers. Carers taking the ostrich approach may find themselves disconnecting. They may avoid going home or otherwise dealing directly with the problems created by the eating disorder. Families may feel ashamed and secretive. They may isolate and not reach out for help. They may blame the person with the eating disorder and say, "It is your problem, not mine."
Solution: It is best to work to reduce avoidance and escapism. Eating disorders are family affairs. They affect friends and everyone who cares. Eating disorders are diseases of disconnection. To reduce isolation and loneliness, work to increase connection and communication. Reach out to help and support.

and feeling the need for one of these?
I should just pull myself together and take the wonderful Carrie Arnold's advice and get one of these instead.
Nah, it's Friday so I know Ranty Mandy, Sam, Sarah and Nelly will be joining me in filling up and emptying one of these....
Roll on Wine O'Clock

Sometimes you don't need words...

(Bromelow and Mc Nulty family)

Growing Up

Laika's most recent photo just in - my, how she has grown in 3 months!

According to Granny Colleen, she still likes ear licking, though.  

I had a long conversation with Cousin Ann last night, after she sent us an early Christmas present for the house in Southwold.  She has gone and got herself an iPad, which I think is brilliant and does relieve her lovely daily from having to save my blog every day and bring it up for Ann to read.  Hopefully, the nice man from BT will come and fix her broadband - something to do with a switch in the loft - so the blue light will come on on the Home Hub and she can start surfing.

I do admire her on many levels and her enthusiasm for new age technology is one of them.  I think she will enjoy the iPad so much more than trying to learn how to use a computer and I have told her she can download Bridge games to practice.  I am not sure that Twitter is for her, though!

Yesterday afternoon was spent teaching HWISO the intrawebz banking (again!).  That was tense.   I am glad that TNBMITW will be on the end of the phone for him. Why is that men just seem to find following the instructions on the screen difficult?  HWISO is not an arrogant man.  He just seems to find doing things in the order as printed quite clearly on the screen - he would much prefer me to must tell him.  We got through, paid the bills and did the VAT return and rewarded ourselves with more cake and tea.

The girls got home last night, ate supper and went to bed, leaving me with strict instructions not to wake them up.  Like I'm stupid?  They seem to have the most complicated social arrangements over half term so I am not sure who will be where but I am sure there won't be a dull moment.

The house was looking beautiful yesterday.  I have just picked my way through all their suitcases in the dining room and spied the piles of washing.  Sigh!  It is good to have them back and it does feel right, though I am slightly harking back to this old blog in my grumpy way this morning.  Time for my pills, I think....

Thursday 24 October 2013

Beat that....

Dad does have the coolest Bank Account:

Just saying....

Philosophy from Alice

Alice sent me this poem.  It has taken me a while to post it and I am not sure why, but here goes.

It is by Mary Sheepshanks.

For Huldine
If death is but the first flight
of a fledgling bird - a test
for wings not so far fully tried -
then you'd stretched yours out
for quite some time
to balance at the edge
of life's precarious nest
with laughter and high courage.

You turned your body's valiant flight,
into a springboard for your spirit's flight
- your song will always be
a song of joy.
You lit a flare of friendship
and we, who loved you so much,
remain the richer for your life
and all the warmth and brightness
that you shared with us.


Arriving back late from Southwold on Tuesday night, we found a food parcel from the wonderful Christine - bread, milk, stew and a choccie cake, which I was going to keep for the children but then decided was ideal for breakfast....

This morning, Fifi sent me her puppy photos - can't resist.  Meet Lola.  Loving that she is not letting that naughty ball escape, even though she is fast asleep.

And finally Rose rang to say that Matilda was coming to visit again next week.  Can't resist another piccie of Matilda....

And last but not least, the most glam photo of me I could find, taken in the early 90's at Tutty's wedding.  I need an ego boost because the new chemo is going to make me go bald again, so please forgive the vanity.

Twitter 2

I am getting better at Twitter these days and am flattered by all my new followers - thank you, people.

I was rather bemused at one of my newest followers though...

The Sewage Treatment Store is an authorised UK retailer of Conder sewage treatment products & septic tanks, parts & spares. Fast delivery & expert knowledge!


So I admit to drinking half a bottle of wine last night and being a horrible grouch to everyone who rang me.  Sorry.  It was a hard day and I just didn't have the energy to talk about my treatment, me or sodding cancer.  I did have a long and cathartic conversation with Alex about something completely different to do with the farm and that helped both HWISO and I.  

We had had such a lovely time in Southwold and suddenly reality had come crashing through the door again. 

So I read up a lot on Eribulin and it seems to me that 5 months on it has given me the extra 3 months or so to get through Christmas.  That is a GOOD thing and I am immensely grateful to Dr W and the Cancer Drugs Fund - a debt that neither my family or I can ever repay.  Eribulin is not approved by NICE (see report here) and therefore Dr W had to apply for funding to treat me with it.

The next drug is Epirubicin. We are all a little wary of it as it was part of the FEC chemotherapy that nearly killed me two and a half years ago.  However, we are on a much smaller weekly dose and hopefully this will mean I don't end up allergic to water again.  Eribulin has given me back the ability to have a bath/shower for longer than 2 minutes at body temperature.  I can't begin to tell you what that is like.  Try it for a week (especially in mid-winter) and then you may understand!  Some days it was a toss up between washing your hair or your body and any kind of conditioning/shaving/depilitating was completely out of the question.....

I cannot speak highly enough of the staff in the MacMillan Day Centre at the West Suffolk after yesterday.  They were all utterly wonderful - 2 consultants (Dr W and Mr C), Carrie, the junior doctor, ALL the nurses (Yesterday's heroes were Anne, who makes me laugh whilst sticking me with needles, Elizabeth "3 trollies" who teases me, Denise with her car mad husband and Judy struggling on with a broken foot) and Jules, who runs the department from the reception desk with compassion and calmness when the rest of us would be running around, carrying a pick axe screaming "Out of my way!".

This morning, fuzzy headed, I need to do lots of admin, sort out my starfish and get on with some farm work.  I want to go back to Southwold at the weekend but MUST clear my desk.  Tonight, my beautiful daughters are coming home for 10 days half-term.  Qualify that: they are in our care for 10 days, rather than the schools but seem to be doing lots of parties!  I can't wait....I think!

Wednesday 23 October 2013


A long and tiring day in the hospital.  The Eribulin has stopped working - or rather the cancer has morphed, so the Eribulin is no longer effective.  The mass in my shoulder has now turned solid so aspiration was not an option and my right hand and arm are beginning to swell rather alarmingly.  

I trudged from the MacMillan Day Unit (Oncology) to Breast Care (Ultrasound) and back again with no visible results from anything.  In the end I just sat down and wept.  I have had no pain killers or steroids all day - which sounds pathetic but when you are as ill as me, it matters - and was overwhelmed by pain and hopelessness.

As always support, love and help was immediately on hand - the nurses, Jules the wonderful receptionist, the lovely Lynn's husband - lots of cups of water and tissues.

I got called in to see Dr W AND my surgeon, Mr Coveney, together.  Quite an honour.  They have come up with some madcap scheme, more of which later, if we can persuade a very eminent plastic surgeon to take me on.  In the meantime, we have changed the chemo to another one and start again next week.

Ever cheerful and glass half full, I have to point out that the Eribulin has been effective for much longer than normal - some 5 months now - so I shouldn't complain and there was no mention of the prognosis being worse - ie March still.....

Our house

is now available to rent here.

They are going to add more photos.

We welcome dogs and have an enclosed garden that is terrier proof for early morning and late night pees.  The Marshes are a two minute walk away and the beach is close by.

I have blogged enough about the town for now but have managed to put all the links in so you can see the lovely shops, restaurants and the beach huts.

Colleen and Clare
Two Magpies
The Lord Nelson (dogs more welcome than owners....)
The Swan (spesh for afternoon tea)
The Crown
Serena Hall Art Gallery
The Sweet Shop
The Vintage Gallery
The Black Olive
Gun Hill
Tiger Lily
The Tea Rooms
Sutherland House
The Adnams Cookshop
The Craft Company
The Little Shop
The Charity Shops
The Pet Shop
The two chemists
The Red Lion
The Sole Bay Inn
The Harbour Inn and the fish shops in the harbour
The Golf Course
The Tennis Club
The Theatre (in the summer)
The Picture Palace
The Pier
Suzie's Tea Rooms on the beach

Phew - exhausted just thinking about it.  Maybe I'll just cuddle up with Uhu.

F.E.A.S.T. Annual Conference.

Friday January 31 - Saturday February 1, 2014

 Who Should Attend?

F.E.A.S.T.'s primary mission is to support caregivers of eating disorder patients. Our conferences are designed to be a safe place for caregiver's to meet, learn, and share their knowledge and experiences, and to take a break from the stresses of caregiving. Professionals and other interested parties are also welcome to attend.

Caregiver & Family Registration is open to parents, adult siblings, other family members and recovered patients. Please note that the conference sessions are designed for adults and no provisions will be made for children.

Caregiving Couples Registration is open to partners caring for a loved one with an eating disorder. The second registration will be billed at 50% off. Click on "add another registration" at the bottom of first form.

General & Professional Registration is open to professionals treating eating disorders and others interested in learning about eating disorders and supporting families as they care for loved ones with eating disorders.We welcome and encourage professionals in the eating disorder field to attend. Please be aware, however, that F.E.A.S.T.'s mission is to serve caregivers and that the program content will be presented in a format that is accessible to non-professionals. It is not designed to replace professional training or continuing education. Certificates of Attendance will be issued upon request. 
Student Registration: Students in the fields of  mental health, eating disorders, nutrition, and medical care are welcome at a reduced rate.

Media Representatives should contact F.E.A.S.T. at for press passes.

Early Bird Registration will close on December 1, 2014.
Community Educators/Coaches – Please contact F.E.A.S.T. at about reduced rates for staff who support eating disorder patients and families or who teach about eating disorders.
Included Meals:

F.E.A.S.T. Conference Registration includes a buffet breakfast, plated lunch and two snacks each day.
Optional Events:

F.E.A.S.T. Advisor Appreciation Dinner, Thursday Evening, January 30, 2014. Tickets are $52/person.
Conference Dinner Reception, Friday Evening January 31, 2014. Tickets are $35/person.
Conference Venue:
The Crowne Plaza Addison, Near the Galleria
14315 Midway Road
Dallas, Texas  75001
Conference Room Rate $97.00/night plus taxes
See Sidebar for Reservation Quick Links

DFW International Airport (DFW)

Distance: 17.0 MI/27.36 KM NORTH WEST to Hotel

Take the North exit from the airport to 635E. Exit on Midway. Go North on Midway for about 1.5 miles. After Hornet Rd., the hotel is immediately on the west side.

Dallas Love Field Airport (DAL)

Distance: 12.0 MI/19.31 KM SOUTH EAST to Hotel
From the airport, go left on Mockingbird Lane. Turn left to take the Dallas North Tollway (heading North). Exit on Spring Valley. Go left (west) on Springvalley, and right (north) on Midway Rd. After Hornet Rd., the hotel is immediately on the left.
Addison Regional Airport (ADS)

Distance: 1.5 MI/2.41 KM NORTH to HotelTake Addison Rd to Beltline. Go West on Beltline and go South on Midway. After Proton Rd., the hotel is immediately on the West side.

My New Job

What I really meant to say on Inside Health when I was giving my feedback was something like this

The issue is, that successful and effective ED treatment requires two things at a minimum - nutritional restoration, and replacing maladaptive behaviors with adaptive healthy ones. 
Families NEED to be fully supported and empowered to do those things, because it is going to be AT HOME WITH THE FAMILY that most of the eating and behaving (and support thereof) ACTUALLY HAPPENS 
So the evidence base shows that FBT only does this effectively for about ~40-50% of families. Then (NO DOI!) more has to be done IN ADDITION to or possibly DIFFERENTLY INSTEAD of FBT, when FBT can't be done effectively at home.

Clinicians have got to stop accepting less than 100% nutrition, 100% behavior as the ultimate goal. Those should be the target out of the gate, and treatments added or modified till you get there, or get as close as you're gonna get.

What I actually said was this (Minute 17 ish).  Those of you who know me well can hear the humour in my voice and Esther, your comment was the one that the lovely Erika, the producer, loved the best as well.

For those of you who heard the Lask interview last week and are interested, the debate continues on line on the Around the Dinner Table forum, with Bryan contributing from Australia, Dr Peebles of CHOP weighing in and *I* am finding it fascinating to watch this discussion in an open, accessible forum, viewable by anyone, rather than behind the closed doors of the AED forum or in private correspondence.  Yah for openness.  I am bored of professionals and clinicians whispering behind closed doors and loftily assuming that us mere parents won't understand.

And you may enjoy this article just published.

Tuesday 22 October 2013

Southwold Rules 2

Now I am back home on a reasonable computer and not my Teenage Ipad, which autocorrects and refuses all attempts at editing, I can explain my Southwold Rules blog a bit better, with the aid of a photograph or two.

Here's a photo of Colleen and Clare's window at the moment.  According to Emma Freud, it is the "best shop" in Suffolk.  I tend to agree with her.  But then, I can spend half an hour just gazing at the red Mulberry handbag that I don't need and can't afford but am mesmerised by.  Like the one in this picture, only Fire Engine Red.  And actually there, in person, not a picture.........

Spacious, elegant, inviting, independent shop....

And opposite?

Well, that wonderful chain, WH Smith - garish, overcrowded, selling Christmas decorations.....


Dobby came to play....

We had a welcome visit from Miranda today.  She was tots brilliant.  She arrived with cupcakes, made a load of admiring noises, stripped beds, made beds, chatted, gossiped, came shopping with me, loved the dogs, had lunch, went on long walk and generally brightened our day.  She was such an amazeballs right arm to have and her enthusiasm and love made us smile long after she had gone.  I am with Susan Ringwood - everyone should have a "Miranda".  

We popped into town and met up with Anthony, Kimmie and (finally) the much admired, Mungo, who had spent the morning in our beach hut.  Mungo had gone swimming in the sea and playing with other dogs.  I suspect A & K had just let the wind blow away the cobwebs a bit....

Mungo is HUGE but very very very lovable.  His sometime master and chief admirer should NOT have ordered that 4th bottle of wine last night - just saying. It was a wonderful evening - thank you both - and I really enjoyed it.

Monday 21 October 2013

Power and the remote control

Being deprived of the Intrawebz is bad enough. I have to come up to the Swan for a cooked breakfast or afternoon tea to post the blog - poor me. But we have no TV either. We can only get Dutch TV just now, which is not all it might be. That and some Music Channel which plays loud music I don't understand with lots of swear words in it.  So I have missed Strictly and Downton. Hey ho.

When we were growing up, we didn't do TV. My stepfather was a martinet and it was black and white well into the 70's and strictly for the news and racing. The two Ronnie's and Morecambe and Wise on Saturday but not the Generation Game. He loathed Bruce Forsyth. Definitely not Dr Who and he would watch the wrestling rather than the Football results, which my brothers were dying to watch because he thought football was frightfully naff. I suppose being born in 1914 brings it's own kind of prejudices.

So HWISO and I have had to talk to each other and listen to the radio. It's been rather lovely actually. However, three nights is enough and he is on his way to Halesworth to find some kind of aerial booster so I don't make him Shh during the rather brilliant Air Hostess programme.  We are also rather bored of the news....

I haven't missed the TV but I think HWISO has missed the command of the remote control power trip thing. I think I have rather missed it too!  

Confidence Crisis

Pirate is lying in my bed, snoring and dreaming. He came up yesterday after spending the weekend guarding Em and Georgie at home. He is a complete pain and has barked all night.  Funnily enough, at home, he sleeps through the rutting season, badgers fighting by the back door, foxes snarling and the odd helicopter from Wattisham on night exercises.  Put him in a tow and he feels the need to assert his authority. Sigh. He is not good to sleep with- all that jostling for position in the back of my knees or growling every time I turn over. His new trick is to lick me when I snore.

Tonight we are meeting up with my dear friend and ex-boss, Anthony and his lovely girlfriend Kim.  They are staying in the swan with possibly the most spoilt Welsh Springer Evah, Mungo. I have left them the beach hut keys and instructions and can't wait to see them. Or I couldn't until glimpsing my steroid swollen hairy face in the mirror this morning.  I know he reads the blog so look out for short grey hair, puffy face and shambling walk my friend.  Thus are the mighty fallen.

Lists to do today and definitely a little brain rinsing later on. Without Pirate. I hope. 

Darby and Joan 3

Moving with Darby and Loan

So now the lorry is unpacked and we are in a frenzy to get the empty boxes back on the lorry. Frenetic ripping of tape and waving of those snappy black gloves and we manage to get most of them done before the blankets are re folded and strapped up. A last cup of tea for Steptoe and sons, a run up to town for a sandwich, which morphed into a delicious picky salad, bread, ham and yummy pots of things lunch and long conversations with HWISO about our £10 Tescos phone being dropped off with Julian on his way up and Tiff and Ali were gone.

The silence settled. I was waiting for HWISO and the dogs, the John Lewis lorry with the beds and for the reality of the fact that we had somehow bought our own house in Southwold to hit me.  I shuffled around those gloves, which Ali had left as a stark reminder by the shiny taps in the kitchen. I went to restlessly doze on the sofa.

HWISO arrived with the Labradors. Pirate had "opted" to stay behind with the girls. Trouble went ballistic round, sniffing and wagging.  Uhu wagged gently in his "I've done this before" way, then lay on the sofa and slept, snoring gently beside me.

HWISO grinned his way round the house, making lists of things to do.  I pointed out that it was Southwold so that all the shops were about to shut.  So, if he wanted anything he ought to get a move on. Trouble settled and slept.

I spent a long time looking for the phone point

The beds arrived.  We ate. We slept.  With a huge smile on our faces. We made it. 

Sunday 20 October 2013

Darby and Joan Part 2

So we are down to one car and one driver. Tiff's alternator has broken so a tow truck is on the way. Tiff's hangover is so bad she has to give up after one sip of coffee and switch to tea and we all opt for the mega breakfast with eggs, bacon and lashings of toast and marmalade.

The removal men are due at 9 and Tiff and Ali are still squabbling about who is most annoying in the morning - Ali for waking up early or Tiff for pretending to be asleep when she was obviously not and Ali wanted to chat  This conversation is taking place at the breakfast table at 8.45 am. Mild nauseous panic rising in my throat, I set off to pay bills, pack and get my bags carried down to the car.

Eventually we are loaded up with a plan. Tiff and I will stay at the house, whilst Ali braves the wilds of Pakefield to find a cheap mobile phone for Julian's DofE expedition. She is also in charge of buying some milk. The girls come in and shriek at the house. It is perfect. My enjoyment of their shrieking is somewhat tempered by HWISO and Georgie on the phone having a crisis.

Ali sets off and Tiff and I stare at each other in an empty house. Her hangover is monstrous. I take pity and hand out pills. The removal men arrive.  The plan was to put a sofa on last so it would be first off, so I could lie resplendently and vaguely hand wave.  Best laid plans and all that. The sofa was about a third of the way back and Steptoe & Son were in no particular hurry to rush this job.  Lots of blanket folding and fiddling with the ramp.  Tiff and I smiled and explained there was no milk but we would go and get some.

By the time Ali arrived back from a totally bewildering and fruitless trip round Lowestoft in search of a mobile phone, we were still sofa less but all the tools had been unpacked into the garage and all the blankets had been re folded to the other side of the van. Ali raided the paracetamol, had a cup of tea, snapped on a frightening pair of black rubber gloves (think All Creatures Great and Small) and went all "lickety split" on the men. There followed a frenetic half hour of unloading, questions and unpacking.

I think it was those gloves.  Either that or the snap when she put them on. Whatever it was, she obviously put them in mind of the James Bond woman with those knives in her shoes.

Even Tiff's hangover cowed before those gloves.

More to follow .......

Becoming a resident

Southwold Rules

You are not to go to Costa Coffee. There are at least three independent shops offering coffee even more delicious with cakes and treats that are not homogenised and pre-packaged. We didn't want Costa. It is a chain store that is not welcome in a high street still full of independent retailers.

WH Smith. You really don't understand Southwold at all. Filling you windows with glaring posters of offers and Christmas decorations is not going to stop the fact that this branch is the worst performing in the country because nobody needs you.

Don't use Tescos Expresss. Use the Co-oP.   Certainly don't buy your newspapers there. Use the independent retailers.

Be kind. Remember that this town is full of elderly people who keep the town running when you are not here on holiday.

Pick up your dog poo.

Don't drop litter

Smile.  Lots.  It's that kind of place. 

Getting over it

I adore Southwold. There is something magical about it and it is filled with many many happy memories from the whole of my life. The photograph of me, HWISO, James and our mums on the beach is of Southwold, over 40 years ago.

Part of the reason I love it so is living in a town that is also a village. Yesterday we had an eclectic list of things we needed for the house including sliver foil, flower vases (Thank you so much Mrs Crispy and Nessie), paper to write (can one resist a vastly expensive notepad with pictures of beach huts, rather than the bog standard A4 lined?  No!), food for lunch, loo cleaner, bread, lamps, fireproof dustbins (still!) and aerial cables to tune the TV. Southwold is right on the edge of transmitter territory and needs complicated boosters. Sigh.

This sounds like a hypermarket shop but was transformed into a delicious meander through town, accompanied by a delicious latte from Munchies. When you have terminal cancer you get disabled badge for your car. HWISO has a real problem with this.  As I patiently explained yesterday, using them to park the car halfway up the High Street so I could meander back and forth with my shopping (I am very one-handed just now) was fine. The badge is for use by me and he should try and remember that expect me to walk miles carrying heavy shopping which I just can't do. Sigh.

We wen to Mumfords which sells everything you need on a practical level, garnering cleaning stuff and padlocks and surface protectors and washing up brushes. I meandered in and put of the three charity shops getting vases and sugar bowls and coasters.

"Have you any coasters?" I asked one lady in charity shop

"Oh yes" she said, "we have some Royal Wedding ones in a box.  For three pounds."

"I'll have those", I said

On getting home, imagine my surprise to find they were Charles and Diana ones. I shall be dispatching them to Rose forthwith who will appreciate them much more than anyone else I know.  It does mean I shall have to return to the lovely gift shop by The Lord Nelson to buy ones with beach huts on but hey, who cares.

A pop into Colleen and Clare to pay for the cardigan I impulse bought on Thursday evening. I love that they know I will come back and pay for it and I did need a navy blue one - you were so right Morgan!  Black Olive for salad and pate and Magpies for bread and cakes and Wells for another surface protector and stocking fillers and the bank (again) and the Vintage Market for lamps and a quick peek into Mum's old house to see a painter hard at work and home in an exhausted but happy heap. So much nicer than pushing round a trolley in the glaring supermarket lights being mesmerised by acres of sameness.

And HWISO refusing to sit in the car and wait in case anyone thought he was using the badge illegally so he fetched and carried and was generally rather useful. Such a nice change from the supermarket martinet who takes his own trolley round and gives me half an hour to do everything.  We even managed to find curtain rings in silver in Derrick Wells.

Very satisfying and not an impulse purchase in sight.

Except the paper.......