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Saturday 31 August 2013

Things I won't miss

when my girls go back to Boarding School:

  • the washing, the washing, the washing...
  • the 4 times a day emptying of the dishwasher
  • the lack of clean mugs and glasses
  • not having my make-up returned
  • not having my own "Ladyshave" that is not blunt
  • not having 17 different types of shampoo and conditioner open at once
  • not doing emergency washing loads 2 hours before a party
  • not falling over unpacked festival rucksacks
  • not running out of towels
  • crisis of transport to and from parties/festivals/stations/friends
  • not living in hope that the piles of stuff put on the stairs will get taken upstairs by someone else
  • not watching my TV - Ty Pennington, you and I have a date...
  • not running out of favourite food every single day
  • "their" music
  • shoes, trailing in mismatched pairs, from the back door to the attic
  • piles of stuff that "cannot be thrown away", including scraps of "working out" maths papers that are actually doodles and mean nothing at all
  • the WiFi connection being so slow because everyone is downloading or uploading something at the same time
  • the organisation required to keep two teenage girls' social diaries fully straight in my head, when they refuse to write anything down
  • the ping of the "incoming" text
  • the vibrate of the "incoming" text, when complaining about the ping makes them turn the sound off
  • not being able to find the remote controls
  • organising meals for random numbers of people at different times
  • not being told off for waking them up because they have fallen asleep mid-afternoon
  • not having to buy Diet Coke
  • not being quite so broke

However, I shall miss them and their beautiful faces every morning, their intricate, exciting, ebullient lives, their enthusiasm, their directness, their curiousity, their intellect, their passion, their uncontrolled laughter, their anger and their joy, their noise, their smiles and their very essence.  Life will a little more calm, but an awful lot duller without them.

Another one of those nights

The problem with Uhu and the plums continues.  G got back from a party at 1 am this morning to find that her father had locked her out - a genuine mistake, I promise - so she rang me to let her in.  At 3 am, Uhu could cross his legs no longer, so up I got again and made the mistake of checking my phone, whilst he took his 20 minute amble round the garden.

And got into an email exchange with a couple of friends in the Great Pacific North West, where it was a perfectly respectable time to be emailing.

And read the comment on Nelly's blog from the "suspected" clinician of two blogs below.

So the brain fires up.  Stimulated by steroids, morphine worn off and a windy night meant that I just couldn't go back to sleep.  I am reading the grown up J K Rowling book at the moment.  Is it just me, or does anyone else keep expecting Hagrid on his motorbike any minute?  It eventually worked its magic (Ha Ha) and I dozed off for another couple of hours.

Meeting HWISO in the kitchen this morning, we decided that the dogs don't wake us up when the children are away.  Is this because the dogs don't get disturbed or that we sleep better when the girls are not under our roof?  The girls don't normally thump around and keep us awake into the small hours - unless we have been particularly bad, schoopid parents and need punishing - and I suspect are well tucked-up and dreaming at 3 a.m.  Maybe the dogs do bark at 3 a.m. when the girls are away and HWISO and I don't hear them because we are more soundly asleep.

What slightly worries me is that Mum used to say "You may be 30, 40, 45 and a mother yourself, but you are STILL MY BABY".  

Do other parents not sleep so well when their children are at home - listening out for them as we used to do when they were babies?  Or is it just me and HWISO?

Uhu and me in the sea at Southwold


done for another year.  Phew.  All the grain is safely gathered in to the stores and we are taking a big deep breath.

As I said yesterday, the work continue apace and there is still much to do but the tension of watching the long-range forecasts and the relentless pushing to get the corn in of an evening, before the "dag" comes down, is over.  

For me, that means that the "morning meeting" (6.45am round the kitchen table) changes.  The talk shifts from dieseling the combine and moving the header trailer, or "putting some air" through the grain store or where and when we are going to "move" today, towards the future of the farm.  I like this bit as I can finally get them to concentrate on the longer term, make plans and move forward.  

They work well as a team, for the most part, and have turned the farm completely on its head in the past 5 years, from a "gentleman's hobby" to a working profitable farming partnership.  I am really proud of them.

Analogy wise, I have seen this in many families in my work too.  I am equally proud of them.  I have also seen a subtle sea-change in the attitude of clinicians towards parents of children with eating disorders.  It is a minute shift and I do feel we are still melting ice-bergs with disposable lighters.

If only I could get them round my kitchen table at 6.45am every day.....

Parents vs Professionals.

"I think sometimes these conversations are becoming too black-and-white. If you look at other diagnoses, a child deteriorating can have a few causes:
- Inadequate medical / psychiatric care due to unskilled professionals
- Lack of resources (which is the policymakers', not the professionals, fault - most professionals are enormously stressed by being unable to offer what they would like to offer and this is a major cause of burnout)
- Parents being unable or unwilling to follow the treatment plan (rare, but this does occur with all types of illnesses, stigma or no stigma)
- The illness is so severe that despite everyone doing the best they can, the child becomes more sick. I think it is unfair to blame this on either parents of professionals.

It does not sound like this family has boundary-setting issues, it sounds like they have a dreadful and judgmental professional team. But boundary-setting issues can be a problem in the treatment of eating disorders, just as they can be a problem in the treatment of schizophrenia, anxiety, OCD, diabetes, and childhood cancer. I would venture to say that because eating disorders are essentially an anxiety disorder that responds to EXRP, like OCD, there are huge demands for boundary-setting, far and above normal parenting, so families that already had a hard time with this or chose to parent with loose boundaries might benefit from nonjudgmental coaching. Discussing this could easily be part of an effective FBT treatment plan, if a particular family did struggle with it and wanted help with it. Of course some professionals are truly not doing their job, but there are many others who are compassionate and informed and who shouldn't be demonized for trying their best to treat severe illnesses that have a less than 100% full recovery rate at even the very best and most well-funded programs. I think you are completely wonderful and I know that is not really what you are saying - I just think sometimes it can sound like "parents vs professionals" even when the issue is really severity or resources, and it is better to work together . "

This reply came in on Nelly's Blog overnight and it raises an interesting perspective.  I suppose I do come across as a shrill harpy complaining about professionals and treatment protocols a lot of the time and feel the need to defend myself, so here goes.

I suspect the person who wrote this may be a professional.  If you are, I would love you on my team, please, as long as you explain all this to parents.  Knowing that a professional is "on side" and wants to work "with parents" to help a severely ill child is the key.  Being prepared to discuss and debate what works for one particular family and try things out, rather than doing tick box "CBT-e for 6 weeks and she should be better.  If she is not she is not "engaging"" prescriptions that we see all too often.

What I am kicking back against is the power thing.  Irish up put it so well

"I always find it interesting when someone is willing to assume facts not in evidence for the party(ies) who have privilege and power or are otherwise in the stronger position (in this case the CAMHS team), but are FULL of questions and interrogations for the person in the subordinate or marginalized positions. And by "interesting", I mean "makes me suspect they are biased in favor of the dominant discourse".

I am ploughing my way through two other cases involving CAMHS teams at the moment.  One here and one in Australia.  In both cases, the prejudices and preconceptions of the lead clinician have put a child's life at risk.  

In one, the mother is being told that she has "attachment issues" - the child was 7 when this first started and therefore too young to have an eating disorder - and has been denied access to a second opinion from a specialist for TWO YEARS.  The lead clinician has called Social Services in, threatened to have all her children "taken into care" and obstructed any kind of treatment for this child by insisting that she stays in full time education, among other conditions.  This is an abuse of power.  Everyone has the right to a second opinion.  I am in awe of this mother's patience and courage as she works through the system trying to ensure that, eventually, her child will receive the proper treatment for her very serious life threatening condition.  What physical and mental damage has been done to the patient and to the family is immeasurable and unquantifiable.  

The other case involves a mother who was literally screaming for help.  Instead, she was again threatened with having her children taken into care.  Why?  Again, her child was too young to have an eating disorder and she (the mother) was obviously "deliberately starving" her.  The child is now in hospital and very very sick.  The mother does not have any form of "Munchausen's by proxy".  The clinicians have had no reprimand, no rap on the knuckles, no kind of disciplinary hearing at all......Yet.

Sadly, the parents of children with eating disorders are marginalised.  Until we can get some kind of balance and we encounter more clinicians who are on our side and want to work together, rather than blame someone with a load of non-proven theories (attachment issues AND Munchausens all in one blog?), we have to carry on fighting.

Having said that, there are some great people out there, fighting with us.  I am very proud to not only know them, but also to call them my friends.  

Friday 30 August 2013

A reply from Jane....

To my blog 

Tried to reply to cousin Charlotte's blog but messed up so will post here. 
The bus ride to Oxford with my Mum (Auntie Bid), Uncle John and Auntie Linda (my Mum) is now a bit hazy, due to the interesting day that followed and which ended with Linda taking us all to tea at the Randolph for a bit of peace and quiet. 
There is definatly a family gene, which makes certain members compelled to chat to strangers. I do not have it due to shyness and a childhood dread of who my mother would speak to everyone and anyone. Even today I took her to the Woodland Burial Ground and she found some poor old chap to accost. 
In her later years, she always arrived by train from Wales with some young man in tow struggling with her luggage, having sucked his life history from him! The ultimate goes to my grandmother (Charlotte's great Aunt Dorothy) who in the 1940's sold her farm on a train to a stranger she got talking to!

Rock and roll, Aunt Dorothy.

Nearly there

If we don't have another fire on the combine (gulp!), no punctures and can get the storage at the farm we contract farm for sorted out, we should finish combining today.  That is not the end of harvest though.

We are about a fifth of the way through drilling the crops for next year and all the land needs to ploughed or cultivated, drilled and rolled and sprayed and (hopefully) rained on, to get the crops going for next year.

It is that twixt and tween time.  The harvested grain is leaving the grain store in lorries and going to the docks at Ipswich.  The money should be coming in in the next 28 days.  Meanwhile, I am faced with huge bills for diesel, seed, spray and overtime and juggling them, according to urgency.

Non-farming folk always think that "harvest" is over, once the combines have stopped rolling.  I suppose it is.  However, it is about a third of the way through the autumn work.  Combines can eat up the acres with their huge wide headers and chew their way through lots of fields in a day, if the weather is right and the corn is ripe.  They spit out ten tons of grain into the trailers, whilst on the move and forge their dusty way in an impressive show of strength.

The tractors pulling the ploughs and power harrows and drills are much smaller and the machines they are attached to take a lot more time to plod up and down the field, cultivating and planting.  Reaping takes a couple of months.  Sewing and nurturing takes 10 months.

I just can't help drawing the analogy between refeeding an eating disorder patient (reaping) and actually getting them back, mentally and physically, to a place where they are truly recovered.

I also can't help visualising parents starting off as a combine, surging through the fields, cutting down the eating disorder and then transforming into chugging tractors, turning the soil, planting new seeds and getting a different crop next year.

(Picture - me in combine wheel years ago....)

My on-line life

I was suddenly struck by inspiration last night and opened up a conversation between the Fairy Blogmother and my school friend, Caroline, because of something my achingly trendy friend, Lydia, said.

Of course, I know who Laura is and that she has two names.  Caroline follows my blog and stuff on FB and I assumed that she would know who Laura was, despite the fact that I was not using the "Laura Collins" email address.

I nosespat my nice glass of Burgundy - yes, B, you were right.  Red is better for chronic pain than rose - when this popped up in my inbox

"Laura Collins of the blue hair episode"

I don't know whether to laugh or cry that the woman who saved my daughter's life, founded an on-line support forum for parents and carers of children with eating disorders and is probably one of the most famous parent advocates in the eating disorders world is henceforth to be known as "blue hair episode".  

I'm opting for laughing because it really tickles me to keep repeating "blue hair episode" whenever I see Laura's name.....

Winter is coming

and you may need something to start a fire with.

Can I suggest a book that has absolutely no other use and SHOULD NOT be read, however bored you are?  It's free and will probably burn well......

gjantz has commented on: "Disordered Eating: Control or Controlled?"

Subject: Complimentary Copy of Hope and Healing From Emotional Abuse
If you would like to read the book from which this blog post was excerpted, I
am happy to share it with you. To request a complimentary copy, click on the
link below. Scroll down to the Contact form. In the Message box, state that
you would like a copy of Hope and Healing From Emotional Abuse, followed by
your mailing address.

Request your copy here: [1]

Thursday 29 August 2013

But but but (or inside a cancer patient's mind)

I have been feeling remarkably better since my little jaunt to hospital 3 weeks or so ago.  Good news, you think.  Well, yes, it is good news but the old brain can't leave it alone.

You see outside factors, such as my hair growing back, eyelashes returned and even the eyebrows (although they are grey) and back, help the self-esteem.  I don't feel so tired, so sick and so washed out.  I have become accepting of the limitations of chemo-brain.  I feel OK, not depressed, not angry, not futile but actually like I may still be making a useful contribution as a wife, mum and annoying bristly hornet to idiots in ed world.  I am eating like a Trojan (admitting to 11 pm snack of New York Cheesecake from Waitrose  WITH double cream), finding it easier to run up and downstairs and am no longer blindsided by fatigue quite so much.


The physical signs are not good.  The lump in my shoulder is no smaller but is no longer filled with fluid.  This might mean that the cancer is getting bigger or just that the fluid is not in one big pocket anymore or that everything is so inflamed.  The mobility of my right arm is pretty limited now and I have to remember to take pain meds every four hours and I need morphine to help me sleep at night.  I can feel stuff in the lymph nodes round my neck - it sometimes feels like a necklace of barbed wire after chemo.  I take longer to heal from blood tests and injections and knocks and bumps.

So is the chemo working?  It seems to have worked on the bits of cancer that had spread outside of the main area at the last scan some 6 weeks or so ago.  It doesn't seem to be arresting the main area particularly.  At least it's not making it grow like the Docytaxyl seemed to.  But the lump is definitely not decreasing and seems to be increasing.

My next scan is in another couple of weeks time, after the next round of chemo next week.  I don't want bad news this time.  I have had enough of that. I am one of these people who don't peek and prod my Christmas presents or open my cards early on my birthday.  


I would rather know than not know. 

I think.....

Note to HWISO

Sorry I shouted but you were being an idiot.

I know what it's like and how difficult it is to sometimes see the bigger picture.  However, it always helps to remember that I am always right....

Love you

Just saying

Update on Nelly

Well it seems the rest of the world know about Nelly - the blog had more hits in one day than any other blog I have written - but it seems the CAMHS team family therapist remains in blissful ignorance.

"Local FT said he wanted to work with us the family on systemic issues so that ' the very real risk of relapse' is avoided. 'My blood started to boil and I let him carry on about issues with our son, he is an opinionated 16yo.
I heard... We are flagging up that if B relapses it will be the family's fault'."

I can do no better than copy some of the comments on the original blog to explain why the FT is an idiot.

There is not a shred of evidence that a household without firm boundaries causes eating disorders or that setting boundaries prevents eating disorders.

What matters is that eating disorders are biologically based mental illnesses that are nobody's choice and can kill.

Many doctors and therapists meet families when they are already in crisis and seemingly dysfunctional. In most cases of illness and mental illness, the dysfunction came along because of the illness and not the other way around. It's incredible that so many people working with families in crisis are not able to understand this.
or this

I always find it interesting when someone is willing to assume facts not in evidence for the party(ies) who have privilege and power or are otherwise in the stronger position (in this case the CAMHS team), but are FULL of questions and interrogations for the person in the subordinate or marginalized positions. And by "interesting", I mean "makes me suspect they are biased in favor of the dominant discourse".

Meanwhile, the CAHMS team characterizes a woman who is managing to parent other children, is creatively trying to deal with day to day difficulties of chronic binge behavior, is self-educating by reading and engaging in self-care by reaching out for support ALL while dealing with violence at home, as "functioning at the level of her children". ORLY? How many children do we know would actually function under those circumstances? For that matter, how many of the CAHMS team, whose clinical treatment over 15mo was ineffective, would be able to function under those circumstance.

I am also unsure how CAHMS language - "the family continue to engage in such a fragmented and disorganised" "systemic issues within the family" - and all the rest, can be read in any *other* way, than putting "the family" at fault. 

But here is the main issue. Of the CAHMS multi-disciplinary team and The Family, ONE of those groups are trained clinical professionals, whose JOB it is to handle and treat children with mental health diagnoses. THAT is the group who failed to do their job, if over the course of 15mo, the child got worse, instead of better.

Thank you to all who contacted Healthwatch on Nelly's behalf.  I am hoping that someone might get round to tell the Chichester CAMHS team that something is afoot.



It's been a busy few days on the internet here.  

I find it amusing that, when I first started my blog, people liked to remain anonymous.  The Eating Disorders world tends to dwell in some kind of twilight zone of stigma and shame.  Those of us who do step out of the shadows and make a noise are constrained on so many levels - needing not to seem like a screeching hoard of bristly hornets, needing to remain polite and focused on a very emotive subject, needing to rise above the shame and challenge the stigma, needing to make ourselves heard without being shrill but being fearless and challenging at the same time.

We are lucky enough to have great examples to follow.  The parent advocates of the autism world and those of the schizophrenia world have blazed a trail for us.  My friend, FM, was taken aback at a Church Festival this weekend by the support she received when raising a question about mental illness. 

Nowadays, people seem to be flattered to be on the blog and even some of my most loyal friends, who trudged through BMI rants, are actively promoting it - Anthony - thanks.  My readership has risen hugely too.  Whether that is the cancer or the parenting or just that people like the ramblings and hope for a mention, I am not sure.  However, I am grateful.

On the note of people on the blog, I did promise my friend, Melissa, a long time ago.  So here goes for a bit of reminiscing and a great photo.

Melissa and I have been friends for so long, it is embarrassing so I won't name any figures but let's just say we did the whole dolls/dressing up/first boyfriend thing together.  There is only one problem with Mills and that is that I am a year older than her, so I always got into trouble for "leading her astray".  I can assure you that she is quite capable of getting into trouble all by herself....

When we were at prep school, I had smuggled in a radio.  Mills was about 10 and I was about 11 and, one wet and miserable Sunday afternoon, we were caught listening to the Top 40 on Radio 1.  Ears pressed against the radio (on Volume 2), we would probably have got away with it, had she not immediately come over all guilty (and probably went red too!).  (Revenge is sweet ....)

The radio was confiscated - I don't think I ever saw it back and it probably went straight into Matron's sitting room, permanently tuned to Radio 3, providing much needed solace for her.

In the subsequent furore that surrounding this "breaking of the rules" and punishment being required - Top 40 records in 1976 were obviously VERY subversive - Melissa was given a lecture about being "as weak as water" for "coming under" my influence.  (I was a troubled child, even then).

I am delighted to tell you that she is not "as weak as water" as the photo below shows.  *I* have never driven the combine on my own - this is not ours, BTW, but is pretty similar - and I admire her for her bravery.  I also admire the farmer who let her drive it, but that's probably a whole other blog.

Wednesday 28 August 2013

Sweet Sixteen or The Summer That Sucks

Scottish and American parents are officially over the "last week" of the summer holidays and are Back At School.  Here in England, we are walking through the treacle of last few days of the Summer Holidays, trying to fit in social commitments, uniform, book, pencil case, shoe shopping, filling in the forms, emailing staff, finding the games kit, with the white noise perpetual chorus of :

"Have you done it yet?" (Said whilst emailing headmaster about car, whilst talking to Housemistress about how to get hold of Head of Games about pre-season Hockey training, which starts tomorrow.  When giving phone number of Head of Games for Em to call, was told SHE couldn't call him as he was really scary and please could I.  To be fair, she did go very still and kind of pale when listening to his message on the answerphone about training schedule - WHAT IS HIS SECRET AND CAN I HAVE SOME?)

Texts from G, on her way back from SoF with HGG and EHP

"Have you still got the receipt for my TopShop thing?"  (Which receipt?  Which thing?  When?  Don't I always get them put in the bag?  Oh Holy Crap - did I throw away the bag with the receipt in it? upstairs to her bedroom and met with loads of topshop bags, which I suspect are full of receipts for "things".  Stop myself.  WTF am I doing?  She will be back in 2 hours.  She can sort it out)

"Did you pick up my photos from Jessops?"  No.  I didn't.  I forgot.  I was there just yesterday, right outside the shop, talking to my sister-in-law about her car windows that spontaneously combust whenever she puts her key in the ignition and I completely forgot what I was doing so I went back to H&M to find Em and advise on a t-shirt.  

The summer after GCSE's, when you are 16, is supposed to be the best summer ever.  It is the longest holiday, no pressure, no work - just sun and parties and boys and stuff.  Everyone says so.  Everyone remembers the summer of being 16 as a sunshine achingly exciting care-free time.

What I had forgotten is just how hard my mother worked around me that summer to keep me happy.  And how achingly bored and lonely I felt at times.  And how insecure.  And rudderless.  And alone.

Don't get me wrong.  I had fun.  I saw friends.  I went to parties.  Hung out.  Stayed over.  And was care-free, looking back, although at the time I think I felt beset by the woes of the world, the unfairness of it all and was downtrodden by the fact that my parents were SO stupid and really didn't understand the simplest of things, let alone me.

I must have been hell to live with.

My mother was darn lucky that there was no texting or messaging when I was that age.  I am not sure she would have been happy to be besieged by mass media with all those little details I felt she should be doing, whilst I was doing more important stuff, like thinking about sleeping....

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much he had learned in seven years.
Mark Twain

Chemo Ward 5 or 6 or whatever number it is

I am discombobulated by an encounter in chemo today.  

There was some nonsense about potassium levels so I had to have another blood test and wait for the results so the 20 minutes quickly turned into an hour and a half.  (All fine.  Had chemo!)

Opposite me was a man, having herceptin and sitting beside him was his obviously anxious wife.  You could feel the barely suppressed waves of anger and frustration flying off her.  She was what my mother would have referred to as "highly strung".

We got talking.  Her husband is in remission, which is great.  Really it is.  However, I did find her automatically assuming I was the same age as them (70's) when I told them my cancer was terminal slightly - well - insulting really.  I also REALLY minded about told that the reason her husband was in remission was "alternative medicine".  I asked if she was sure and that many alternative medicines were just sugar pills and there was no evidence base and had she checked that these didn't interfere with his chemotherapy.

As you do.

He has had 18 months of chemotherapy, she said.  But what has put him in remission was the alternative medicine pills she gives him every morning, she said.  She had told the doctors and the nurses at the hospital all about these miracle pills, she said, but they seemed very sniffy about them.

I said that I was worried she was being ripped off.

She said she had read all about them and knew they cured cancer.

I let it go.  That was really hard.  I said I was glad they had worked for her husband and that whatever made them happy and hopeful was money well spent.

And muttered to myself, very very quietly, "So nothing to do with the chemotherapy then."

I was glad when they went.  He looked very old and ill to me.  She buzzed off, taking with her the waves of anxiety and we settled back down to normal calm routine.

Where's Ben Goldacre when you need him?

Short and Sharp

I am pretty good at dishing out advice and really crap at taking it.  I guess being one of life's givers has its downsides.  However, with a limited time left, I am beginning to learn to put myself and my needs, as well as that of the family, to the forefront and am managing to deal with the consequential guilt.  I am learning to say "Not Just Now" to people.  I am learning that spending time with Em in H&M is bearable - is it just me that hates the smell of all those cheap clothes? - and stopping making plans for every day of the week is actually good self-care.

Self-care is very important.  You can't look after other people if you are not in a good place yourself.  In my case, this is particularly ironic, as I am in a terrible physical place but still feel the need to try and help other people.  It's just my nature.  My brain soothes itself by taking on other people's stuff and ignoring my own.  So I am trying to be less of a "sympathetic" ear and trying to take less of the other people's "need to see you" stuff.  It is hard.

However, sometimes I just can't help myself.

Jen's blog and the blog about Nelly yesterday have brought forth a flurry of new Twitter followers (including people from NHS Trusts and mental health workers) for both me and Feasttidbits, lots of comments from other parents who have had similar difficulties with this particular CAMHS team and horror stories from other parts of the country and other parts of the world, where similar health systems are in place. These are not just stories about eating disorders but, local to us, stories about children of 12, with high anxiety, suicidal, self-harming, depressed, being told to "visualise" all the bad stuff in a ball and then "throw it away".  Er.  Right.  That's obviously evidence based treatment.....

So instead of reflecting on the delights of encroaching autumn, I am immersing myself in how to get hold of copies of the reports and reviews in Scotland, other UK Health Trusts, NSW and Melbourne.  Why?  Because it matters.

Sometimes it just much easier to deal with these things on-line, as I can walk away, make a cup of tea, have a fag and a pee and come back to it, without offending anyone or anyone feeling the need to follow me round, talking when I am doing this.  (And, yes, I have had someone standing outside the loo door, still talking, whilst I am having a pee....)

I know this sounds ungrateful and selfish.  I know people, in the main, want to be supportive.  I know I should be happy that people love me and want to spend time with me.  As you can see, wracked with guilt....

Right now, my brother is providing the perfect type of support...

Just like my mother

My mother could make friends anywhere.  Going on a train journey with her opened up a whole new world of people to whom one wouldn't otherwise have talked.  It's a family thing and I am hoping my cousin, Jane, will be able to relate the story of the bus ride into Oxford with Mum, Auntie Bid and Uncle John to demonstrate.....

Anyhows, I seem to have inherited this trait and, during a 3/4 hour wait for a blood test yesterday, I ended up sitting next door to a sweet lady from Haverhill, newly diagnosed with Breast Cancer and due for her operation tomorrow.  I tried to soothe and help (and, no, didn't tell her mine was terminal).  I gave her an "empowerment" list which went something like this"

  • Nightwear that does up with buttons - taking t-shirts on and off with missing lymph glands from armpits hurts.
  • If you haven't got decent slippers/Uggs, now is the time to invest.
  • Bring food into the hospital.
  • Forget the Complan (she has lost a lot of weight) - go for a nice ice-cream smoothie with fruit, a bit of cream and chocolate sauce.
  • Baby wipes for armpits.
  • Spanx bra-lleluiah
  • Take pain meds BEFORE the pain gets back (thanks Lisa!)
  • When people ask what they can do, give them your washing/shopping list/hoover/dog to walk
  • Don't worry beyond the next week or so.
  • Breathe.

HWISO and I had a "catch up" with the darling bank manager yesterday.  I suspect, there are very few bank managers with whom this is a pleasure but with R it is.  I know, quite categorically, that I am leaving HWISO in good hands with him because he

  1. understands farms, farming and farmers
  2. understands HWISO and what makes him tick/nervous/soothed
  3. understands my brother-in-law as above
  4. is patient 
  5. explains everything carefully, clearly, concisely and without even the merest hint of condescension 
  6. knows all the local village gossip as he lives in the next door village
  7. is on OUR side.

He also likes dogs (tick), thinks that meeting round the kitchen table for tea and biscuits at the end of his long working day is fine (tick) and never ever makes you feel he has to rush off to do something more important.  

Bill and Mary-B popped round with a very welcome bottle....OK, two bottles....of champagne last night and, most importantly, a load of funny stories, giggles, tears and love.  It raised my spirits marvellously after a long day battling it out for Nelly and rallying support and help for her across the internet.  It was a joyous way to end a long day.  However, champagne seems to make my brain fizz and I have spent all night writing blogs in my head.

This morning, my more brilliant ideas seem to be vanishing as fast as the darkness outside my window. Or am I making an excuse to drink champagne again?  I think I need to request the presence of Bill and Mary-B just to make sure that this trial is undertaken under strictly laid out clinical conditions....

Last but not least, a (very old, with hair and no yellow teeth) photo of me and my C&MED partner, Mary, who has just got engaged.  I am so happy for you.  YOU deserve it.  Love you.

Tuesday 27 August 2013

Mother seems to function at the level of her children....

For all my readers who are rolling their eyes at "another eating disorders thing" blog, please pay attention.  Especially those of you who live in the UK.  

You NEED to know what happens to parents of children with eating disorders.  You NEED to know how crap our mental health teams are in this particular area and you NEED to know that, although the child is now safe and Inpatient at a good facility, she came close to dying at the age of 14.

If I don't tell you, you will read some "fluff" piece in the Daily Mail and pass it by, thinking that somehow it was the parents' fault for not stopping a wilful child from making herself sick.  That is not how it is.

"My daughter is 14, has had bulimia since she was 12 (that we know of). We sought help from the GP Dec 2011.Ref'd to CAMHs & been having mixture of professionals moving in and out of our lives, usually seeing someone every 3 weeks. A psychologist at the moment & family therapy,( we dont gel with the counsellor.) Weight is a little below normal, size 4 - 6 clothes. She eats up to five huge meals a day and vomits every time she eats. In between she snacks. The snacks usually stay in. I have food hidden around house,locked in shed and I buy little and often as I have three others in the house to consider. Often we run out of food. Food bills are enormous. She starves herself until she gets home from school when I am not in & house is empty. Mood swings are vile. Violence against me is frequent & police often involved. 
How do I manage the food malarky - daily shopping? locks on kitchen door?
Am I missing out on any treatment that I ought to be getting? 
What works? Anything?
How bad is this level of bulimia? How bad could it get?
No side effects that are visible yet ie teeth rotting, blood tests weekly are normal.
I have read books & just ordered another - Helping your Teenager Recover from an ED - by Lock and Le Grange.
Local pro's are looking into inpatient care but cant locate any atm. (UK, Sussex )
She's on medication - prozac 40mg daily.
Dont know what to do with her to help get rid of ED. She doesnt want help. Pro's are too soft & they let her walk away from talking if she doesnt feel like it! Wet Woosies. Sorry this is long - its my first time. 
D 14, bulimic since age 12. 
I reached the end of my tether, tied a knot in it and am hanging on."

Nelly's first post in June of this year.  To understand just how dangerous purging is and how lethal bulimia is, please read this.  BN is very very lethal very quickly.

To be honest, you have to be really desperate and frightened, as a parent, to go trawling round the internet, find a forum and post to a load of international parents from different countries and health systems.  It takes a lot of courage and often means you have reached the nadir. Nelly had.

The frightening thing is that, from the outside, Nelly had been receiving help from her local West Sussex CAMHS (Child and Adolescent Mental Health Team) SINCE MARCH 2012.  Fifteen months and a spiralling decline.

Nelly recently contacted her local MP and has managed to get a copy of her notes - reviews and such like.  It is becoming clear that the East Sussex CAMHS team lay the blame for her daughter's eating disorder firmly on "dysfunctional" family matters and on her parents "not setting boundaries".  Really?  Really?  

"Mother seems to function at the level of her children"(October 2012).  WTF does that even mean?

"It is clear there are no safegaurding concerns, as both parents, well meaning and caring for their children seem to struggle to implicate sustained boundaries..." (Oct, 2012)

So the parents try to put in place "sustained boundaries" with regard to X's eating disordered behaviour and then the worst happens.  X tries to attack her parents with a knife and the police have to be called.  This child is 13 at the time.

"X has identified when family try to intervene while she is bingeing and purging that she can become threatening and aggressive. She has threatened parents with a knife which has caused police to enter their home.  has agreed not to do this in future ...she will let out her frustrations on inanimate objects such as footballs, cushions. X is reluctant to engage with services.
For the next two weeks the family will not intervene in X's pattern of eating." (Undated but between above incident and January 2012)

Sorry, East Sussex CAMHS but at what point is a 13 year old girl, with an eating disorder, high anxiety, refusing to "engage with services", who has threatened her parents with a knife, is engaging in medically compromising self-harm and progressively declining both mentally and physically NOT on your radar as someone who needs urgent, specialised treatment.  Er....that would be late in 2012, then.  Meanwhile, why not disempower the parents and bar them from intervening in the "pattern of eating"?

In January, a specialist team were supposed to visit twice a week for the next four weeks.  Needless to say the enthusiasm (?) wore off quite quickly and these visits ceased.  X refused to be at home when they came round, so they gave up.  (There's a surprise)

By this stage, the self harming was reaching alarming levels.  Nelly was getting frantic and demanding more care for her daughter and her family.

The final letter, from the Chichester CAMHS team to the private hospital, where X is now on 24/7 one-on-one care and SAFE, was probably the most condemning of the family and the most blatant "butt-covering" crap I have read in a long time.

"History - over the first six months of 2012 it became apparent there were systemic issues within the family, which made it difficult for the family to often attend or even bring X to her individual sessions...(Red flag.  I would call this a red flag that something is really wrong.  You seem to think it is the parents fault.  Did you support them?  Or help them to find strategies?  Or do your job in any way?) Family Therapy sessions the extent of the difficulties the parents experience in laying down boundaries for their children became quite clear (And you helped how?  What "boundaries" were you expecting?  Did you make these clear?  Write them down?  Discuss them?  Or are they in the Care Plan that is "not in the appropriate form" to share with the family?)

..her mother especially was becoming quite anxious with regards to Xs bulimia and started to text the CAMHs team daily. (As is her right.  To me, that demonstrates she is a good mother trying anything to get help for her sick child.  You, on the other hand, make it sound like she is a pain in the arse to you.  Stop you reading the latest Heat magazine did it?  You obviously have not been reading anything 21st century about eating disorders.....)

..she was frightened to stop X from raiding the freezer and binging. The family seemed to be overwhelmed by their childrens behaviours and at times were confused by the multi discipline team supporting them. (Firstly I question the "support".  Secondly eating disorder behaviour is overwhelming)

The team offered outreach work...but there were occassions when the family would let X sleep vs attending individual appointments...(Note from Nelly: "once when X was ill she was asleep downstairs and they woke her up anyway")

.At home her parents feel it is difficult to stop her and Nelly in particular can be quite scared of X(Was this before or after you "agreed" that the family should not intervene in the binge/purge cycle and before or after the police had to be called and I am sure it was during the horrific periods of self harm)

..Our observation is the children have more control than the parents (Sigh.  Sigh.  Sigh)

..We are concerned that if the family continue to engage in such a fragmented and disorganised manner with the supporting services then a referral to the safeguarding team would be appropriate....(Like the family is "choosing" to live like this?)

Xs view - X is very resistant to change with regards to her bulimia. When asked what she would like to be different she said she would like the everyone to stop arguing...(A family of an eating disordered child are under unimaginable stress - just as any family of a very sick child is.)

..consideration to safe guarding issues which may arise and have already at times impeeded the family's therapeutic engagement within the community setting." (What is a therapeutic engagement within a community setting?)

For those of you who have not had a child with an eating disorder, this may all sound very plausible.  For those of us who have, this reads like a well-worn record of ignorance, stigma, platitudes, parent blaming and arse covering.

Shame on you, East Sussex CAMHS, Chichester.  If I can learn about eating disorders, so can you.

One question I would like the East Sussex CAMHS team to answer

If this child had been diagnosed with schizophrenia instead, would you be saying these things about parents, dysfunction, "resistance to change", boundaries and such like.  

I don't think you'd dare, for fear of the backlash from very fine organisations such as Rethink.  The parents of children with eating disorders may not have had much of a voice up until now, but we are coming over the hill.

Food and Chemo

Following the salt blog yesterday, Thinky sent me this. I have added my experiences in red.

Try eating foods that are more on the spicy side. The enhanced spices may kick start your taste buds. But be careful of too much spices, if you are on radiation or have sores in your mouth too much spice may burn. (Spicy is OK - loving chillies at the moment.  Salt added stuff makes me run round the kitchen like Road Runner with a burning tail)

Use plastic eating utensils, and when drinking a canned drink, pour it into a glass this tends to help with the metal taste. (Definitely yes on putting canned drinks in a glass.  I have always hated "fake" sugar drinks and can really notice if there is aspertan in stuff after chemo.  Putting ice in glass helps)

Cold or frozen foods often taste better to those going through treatment. Unless your receiving oxaliplatin (Eloxatin]), which makes it difficult to ingest anything cold. (That's why I am back on ice cream!)

Many people swear by sucking on hard candy like lemon drops or citrus fruits. (Sucking lemons?  Isn't life crap enough when on chemo?  LOL.  Sucky sweets are better than chewy ones, that's for sure)

Acidic things sometimes work...lemon or crystal light in water...ketchup or BBQ sauce on meat...minestrone, one person says to put pickles on everything as it will neutralize the metallic taste. (Very counterintuitive.  Will give it a try)

Marinate meats in fruit juices, sweet wines, salad dressings, or other sauces. (Yes, but want acidic things.....)

Do not eat one to two hours before and up to three hours after chemotherapy to prevent food aversions caused by nausea and vomiting. In addition, avoiding favorite foods before chemotherapy helps prevent aversions to those foods. Your favorite foods may become your least favorite if you try to eat them during treatment and have a bad experience. (This I totally disagree with.  I took this advice first time round and didn't then eat for 3 days.  It was BAADDDDD.  I eat through chemo, whilst I can still taste stuff normally.  The anti-nausea medicine works for me.  The nausea doesn't kick in until 8 or 9 hours later, if at all)

Rinsing with baking soda and salt mixture 50/50 before eating may help neutralize the bad tastes, and as a bonus it helps to heal those sores in the mouth. (You spend a lot of time slooshing on chemo.  I have complained about the yellow tooth from Mouthwash thing before.  This may just be a bridge too far to rinse before and after.  Don't beat yourself up about it)

If the smell is bothering you, use your exhaust fan to remove the cooking odors or cook outside. Or you can buy precooked foods or eat room temperature foods so you don't smell it cooking. (Beware of added salt content)

Try other protein sources (such as poultry, eggs, fish, peanut butter, beans, or dairy products) if red meats don't taste good. (Variety is GOOD)

Ice cream, milkshakes, sundaes and other extreme sweet foods help many. Sometimes it takes a strong flavor punch to get the taste across. (I LOVE chocolate when on chemo.  Can take it or leave it otherwise.)

And lastly it may seem simple but try to eat the foods that smell good and taste good. Try some foods that you may not regularly eat, they may taste good to you.

Getting enough to eat is very important during treatment, it's not uncommon to loose 40 or 50 pounds due to lack of desire, loss of taste, sores in mouth, etc. So when you find something you can eat, and you like it, go for it. You may get tired of the same thing but it's only for a short time. Most people report that their taste starts to return to normal 3 to 6 weeks after treatment has ended. (Glad to see I am bucking the trend here.....)

The most important thing to remember is to just eat.  As my friend, H, tweeted to me last night, it's hell. It's even more hellish if you are suffering from an eating disorder.  My advice

"If you're going through hell, keep going."

Monday 26 August 2013

Sweet and sour?

My lovely friend, B, in Australia listened to moaning about food tasting horrid, whilst having chemo.  I said to her that eating, especially the three days directly after chemo, was a mechanical process and definitely not for enjoyment, as everything tastes of salt.  (Even the mouthwash that turns your teeth yellow!)

I have just got back to enjoying salty foods again - scratch that, all food again and am quite proud that I am one of the chemo patients that is actually putting on weight whilst undergoing a pretty stringent chemo routine.  But with chemo on Wednesday, I know I am back to eating food that tastes like swallowing sea-water for a couple of weeks.

I am in quite a good position to know how important eating regular nutrition is and often have to remind myself just to plod on through.  Although I don't have the psychological stuff that goes with an eating disorder, I do find it ironic that I too have to tell myself to eat, and eat enough.

B sent me this through the email today.  It is nice to know I am not alone.

Doesn't make it any easier though.

So I shall slurp in the Rose (and something bubbly tomorrow night with Bill and Mary-B!) and keep eating the crisps and humus and I will damn well enjoy every single mouthful......

Left Behind

I had a lovely chat with Sarah, after my blog about her yesterday.  It is very soothing to be able to talk to someone who has been through what we are going through.  It was such a relief to be able to be honest, without fear of frightening her or being on the receiving end of one of those "Miracles happen.  I know a man who sister-in-laws nephew was given three months to live...." lectures.  The reality of my condition saddens her but does not phase her and she feels no need to somehow soothe me.

One thing she said that really struck me was when we were talking about HWISO.  I was mimbling on about trying to ensure that we took each day as a blessing and stopped worrying about what was going to happen after I died.  Sarah said it was so hard having a timeline and knowing that it was running out, not to be a bit angry and depressed about it.

Then she said something along the lines of how hard it was to know that your time as a husband/wife team was running out and worrying about facing the future alone was a big thing.

I retorted that it wasn't quite so cool from this side of the equation either.

She laughed and pointed out that I wasn't going to be here to deal with it.

That brought me up short.

As I am the general fixer of the family and seem to be the person people come to when in trouble, I do realise that it is going to be hard to adjust for HWISO and the girls.  "Hard to adjust" - what a ridiculously English understatement.  It's going to be really difficult (trying not to sound arrogant) without me as the default position.  However, I don't do the "fixing" alone.

I am lucky enough to have a huge international community of parents of whom to bounce ideas and strategies and every day niggles, alongside Raspberry Vodka recipes and puppy handling tips.  It was therefore fitting that, in the middle of writing this blog, a beautiful email from my friend, Lynda, popped into my inbox.

Lynda, no I don't mind.  Yes I understand.  Brilliant idea - thank you.

I hope that friends on the ground, like Sarah, and friends in cyberspace, like Lynda, will be able to continue to be around for the family to bounce ideas off and listen to the everyday niggles.  I tend to find it is those who don't "bother" you but send unobtrusive emails and get straight to the point on the phone are the best kind of friends.

Unlike the person who suggested on Saturday "to be helpful" that it was time that HWISO went to see our local priest to discuss funeral arrangements......

Pic of the day from the House of Mutt

A plume of Pomeranians?

Sunday 25 August 2013

Sea and sewing

Whilst I continue to inspire the great Colleen with Serena Hall artwork for my commissioned quilt, Selina sends me an email with a picture of her sewing box, now some 40 years old.  It was part of the uniform list at Riddlesworth.  I can't quite believe that she still has her original one though I fess up to having a sewing box with lots of exciting things in it.

The problem is I can't sew.

Really I can't.

My mum could whip up clothes on the Singer.  She could turn collars and cuffs, put a yoke in a shirt and do a pleated skirt, even.  I find doing a nametape a torturous road to a panic attack.  The needlework mistress at Tudor Hall actually burst into tears when Mum tried to insist that I should do needlework 'O' level.  I really am that bad.

There are lots of things I CAN do and am quite good at.  So why do I persist in keeping a fully stocked, cotton-reel rich, sewing box in a cupboard that I frequently open?

A tribute

A long long time ago, my dear friend, Sarah and I took our four children camping in a horse box for a week in Southwold.  It was a typical British July - pouring with rain and a nice sharp easterly blowing in.  The children were all under 6.  Sarah and her two slept in the front of the horse.  She had beds - bunks, which her children had a propensity to fall out of with bruising results - and a little kitchenette, suitable for cooking minimalistically!  My two and I slept in the "horse" bit on mattresses, which Sarah had cleaned and disinfected to a positively new high level of hygiene.  It was very comfortable but untidy in the back.  A jumble of wet clothes and towels and a heap of plastic toys.

Tiggy, Sarah's jack russell, chose to sleep with the Bevans, snuggled down in the back of someone's knees, warm and smelly.

We spent the days building sandcastles and playing on the beach in the gloomy rain.  We had borrowed a beach hut, which gave temporary relief but we were all damp from start to finish.  It is impossible to dry anything in these type of conditions and attempting to use a damp sandy towel to dry off a soaking wet shivering child turning blue, is a hiding to nothing.

We gave up on baths and things on about Day 2.  All that trooping over the campsite to ineffectual showers and trying to dry slippery children in a tiny space was too much effort.  Sarah and I would feed them fish fingers, get them to bed and then damply, share a bottle of wine in the mizzle perched on two "foldaway" chairs outside the horsebox door.  We laughed and talked and took it in turns to troop across the sodden turf to the euphemistically titled "bathroom block", before stumbling about in the dark, trying to put on nightclothes without waking up the children.

One of the best holidays of my life (even though we gave up on Day 5 and came home).

By dint of the fact that we went in a horse box, you may gather that Sarah is "horsey".  She is also known affectionately in the Bevan family as Mrs Crispy - she folds her dishcloths, for goodness sake!  Her husband, Johnny, pretended to loathe the ponies and was quite vocal about it.  He and I used to have sniggering teasing sessions and chunter away about what a waste of time/energy/money etc they were.  Sarah and the children took it in good heart and used to laugh at us old curmudgeons.  However, secretly, he would happily muck in with the horses, caring for them when they were ill and supporting both his children in their endeavours.

Johnny died of cancer in 2010.

I wanted to share an old video (2008) of Sarah, her mum and her daughter, Georgie and their beloved pony that had to be put down three days ago.  Just because they are a wonderful family who have lived through the shite of terminal cancer and partly because every family pet should have this kind of tribute.  (Georgie Veale will probably want to murder me but, darling, you do look so sweet - rocking that fleece!)  


"Celebrity is as celebrity does."—Gilderoy Lockhart to Harry Potter[src]

I fell of my chair, mid-tea snort, when C highlighted the similarities between Greg Jantz and Gilderoy Lockhart.

"Professor Gilderoy Lockhart, a famous wizarding celebrity who authored many books on dark creatures and his encounters with them. Prior to his tenure as Professor of Defence Against the Dark Arts at Hogwarts School of Witchcraft and Wizardryduring the 1992–1993 school year, he received many prestigious awards, such as Order of Merlin, Third Class; Honorary Member of theDark Force Defence League; and five-time winner of Witch Weekly's Most Charming Smile Award.

He never actually did any of the heroic acts he claimed he had done, but instead used his considerable talent in Memory Charms to force the actual people who had done them into forgetting what they did. 

With thanks to:

Suitable toothy photo available alongside full bio available here.

Dr. Jantz is a licensed mental health counselor, author of multiple books, speaker and founder of The Center for Counseling and Health Resources, Inc., a leading healthcare facility in Edmonds, Washington ( Utilizing a “whole-person” approach to recovery, The Center integrates emotional, relational, physical and spiritual components into long-term healing, personal growth and change. People from all over the United States and internationally come to The Center for recovery from issues including depression, trauma, eating disorders, abuse and anxiety, integrating mental health, chemical dependency, naturopathic, medical and nutritional services. Dr. Jantz believes people can and do change and in the tranformational power of Hope. 

"Yet you are not alone in your denial and pride. As someone who has developed an eating disorder, you are probably a member of a family in which it is expected that you always wear a "perfect face." If you are hurting, you are to hide it from the world. As a result, these same family members may either deny their role in the creation of your eating disorder, or deny its existence altogether. It is up to you to face the truth."

Suitable toothy photo available, alongside links to fantasy articles and books available here.

I need one of these for Jantz.

Saturday 24 August 2013

Another perspective.

Firstly ditty of the day, from the wonderful Selina, via email this morning.  Something that her Mum (the one with more pictures of dogs than the children!) had scribbled down on the back of an envelope.

"Do not be down, be uplifted
Do not be pitied as a victim, be admired as a victor over tragedy
Do not be weakened by despair, be strengthened with hope
Remember the joy and cast out the misery"

My mantra for life just now.  Thanks, Selina.

This blog is one of the most profoundly moving things I have read on too many levels to mention and I am honoured that SJN has agreed to let me share it with you

Disabilities and Eating Disorders: More than just a nightmare of Equal Opportunities

Last but not least, many thanks to Charlotte W for this one. Specially loving the bison....