Thursday, 30 April 2009

harnass the power of thought

It’s Thursday and as far as I know Anne is safely tucked up in hospital. Everyone who reads this should think hard and send good wishes to her – focus yourself on Plymouth, and that one little bed that’s got Anne in it.

And now you’ve done that, I can answer the question you’ve all been longing to ask – why has the Artsmatrix logo suddenly appeared on the blog? It’s because Anne wants you all to know about the Creative Advisors Scheme which is run by Artsmatrix in the West Country. Its Arts Council funded and aims to proved support, and a little bit of funding, for two types of people who work in the arts. Anyone trying to develop an Arts career who comes from an ethnic minority or who has any form of disability can apply for the scheme.

Anne gets the feeling that many people are a bit daunted at the thought of applying for anything Arts Council related and she’d like to encourage everybody to GIVE IT A GO.

Tuesday, 28 April 2009


I was talking to Anne about her blog, and she thought this was an inspirational story for all of us.

A few years ago I was tutoring a 14 year old girl who was bottom of the bottom set for English and hated the lessons – she had no hope of passing her English GCSE. She was fed up with school altogether because her poor English skills affected everything, even the subjects she quite liked. I started the work with her the same way I always did - I asked her to bring something along that she actually liked reading. To my surprise, instead of a comic or celebrity magazine she turned up with a horror story. We set about using it as our text, but it was so badly written, the characters so thin and the plot so creaky, that we soon ran out of things to discuss. So I gave her The White Hotel and told her to have a go at that (and I did warn her parents that it might give her nightmares). It's a tough read for anyone, never mind a disaffected teenager, but she absolutely loved it – gobbled it up in fact, wrote some very insightful essays about it and went on to pass her English GCSE. It changed her life – it didn’t turn her into a literary genius, but it showed her that she didn’t have to accept the labels that other people put on her.

Hello from the Newbie

Hi, I'm Lesley, keeping Anne's blogseat warm while she's in Plymouth. And yes, I am a blog virgin and wondering just what it's all about and how I do it. So, here goes, a leap into the dark...

Monday, 27 April 2009

INTO OPERATION (Action Planning)....

Reduction in the steroid dose having made my typing a little less wild (although I still can't walk far without swaying from side to side like The Drunken Sailor - good job I'm going on The Mayflower, then: that'll make me shipshape....), I am now making what yes will be the very last post before Lesley (Artsmatrix Mentor) takes over. Lesley has some great tips about subverting let us say tricky situations, like living with critical illness, with huge doses of HUMOUR!

Anyway, here is what I have been doing since the steroid got me up at six this morning. (I look like a real Moon-Face too - my face a puffy little cupcake. But the hairstyle doesn't go with it at all, so I've got the loneparent mother of a girl my daugthter was at school with here - a mobile hairdresser, who has done a sterling job in bringing up her two kids - coming round tomorrow to cut it all off. I felt quite dignified wearing my wig last time, once the initial hilarity had worn off. (Raquel Welch Pixie wig - ME . It was so.....convenient, not to have to worry about my hairdo.....Always 'groomed' (with its special shampoo and brushes - thanks, wig lady on Truro Market. Boy, do I see the point of you now - so stop sending her up stupid teenage girls who think it's a blast to have sex with numpty local schoolboys at 14 years old - I know all about you!!). And even the strange lady who used live 2 doors away from me (she lay in bed all night, listening out for ghosts in our shared roof spaces....), said it really suited me.

This ACTION PLANNING/INTO OPS was inspired, I think, by my late father (a great systems man - and also a brilliant scientist, though,personally and emotionally, I think, he never fulfilled his potential, thanks to a certain Hocus-Pocus Parish Assistant (see I DIDN'T GET WHERE I AM TODAY WEARING UNDERPANTS WITH BEETHOVEN ON THEM....). Pa was an industrial research chemist. He got a full scholarship to Imperial College London in the early 50s; and when he'd done all that (he disliked London, but did enjoy jazz - and used to go down the Old Hundred Club with his friend, Dick, who died young before they both got the chance to go to New Orleans.....), he moved Up Country (Up North, in fact) to take up a research and development management job with Pilkington Glass. It was still a family firm in those days, and Pa worked with /under the late Lord ? and the late Sir Alistair Pilkington on several projects, including float technology (a man fell into the liquid float in St Helen's when I was a child - imagine going out like that - in a bath of molten glass! Pa, the poor man's boss, came home IN BITS....). The latter project he worked on was fibreoptics, and he went all over the world to conferences about that one. He loved those trips - ESCAPE. I once got a post card from him written at Fisherman's Wharf, San Francisco. 'I'm sitting in front of the biggest icecream I have ever seen,' he said. 'Looking at the water.' When he was in Japan for 6 weeks, in the 1960s, he wrote my grandparents in Truro a long travelog about the trip...I wish I had kept it. Anyway. I didn't. But I kept the painted kimono he brought me, and a rather sinister-looking doll (the only doll I have in my house) that used to have a lantern made of rice paper - though I ate it long ago. Pa was in Prague in That Spring (1968?), at a Glass Symposium. He fell off a tram and sprained his wrist; and in the photos, he seems to be being followed by a sinister character in a grey mac. He could be a bit precious about that kind of thing; and when a Russian friend came to stay for Christmas once (definitely an old CP member), he was very very chary of her....And there might have been something in it, because, through her I met a strange guy - Serioszha, who asked if I xould photocopy something for him at The British Council Library in Helsinki...he could get me some dollars, he said. Oooooooooooooo Myyyyyyyyyyyyy

Pa used to drive me mad with his lectures about budgeting and financial planning. His Virgo side, I guess. But I have one too (cause I'm a Pisces, and I believe it's the opposite sign, not that I am clued up in the occult/esoteric in any wise whatsoever....). But I have enjoyed being a Virgo this morning: feel preternaturally calm and chuffed to bits to have sorted out these systems:

Which are:

1. Having assigned Legal Power of Attorney (LPOA) to two sterling individuals close to the centre of our nexus here, I am easing their job in managing my affairs - if they need to, that is, by:

Sorting through Utitlities, etc, and collating the bumph. I have made each POA a log book, in which to record their management. Then there's a House-Log (one of them is ex Navy - he'll love it!), in which to record dailng running of the place. The House Log has the phone numbers of all the Key-Holders, and all the Utilities Numbers, including detaisl of which of the bills are alll going through as Direct Debit (most of them). The POA individual logs contain my hospital numbers, etc, for liaison with The Brain Man and his team, and with my Oncologist here and his team, should that be necessary - i.e. because I am sitting in bed in Plymouth looking like Joe Ninety for a bit, with tubes sticking out of my head. (f that does happen, I'll see if I can get a pic to Lesley to post).

Then I sorted out the briefcase with the house deeds and insurances and all that sort of bumph, so I can point it all out to the POAs when they come for a meeting here. tomorrow.The POAs (whose grant of Power of Attorney is being filed for - pro bono (that's the legal fees - i'm paying for the grants)- via a good old friend's firm Up Country (thanks, P). Thanks a million. Pa would be proud of me - and he always liked you!And your father was bloody nice to me too. Although I cannot - I cannot understand why my dad himself instructed such a numpty solicitor Up North to draw up his will. It was a real piece of Parish Assistant malarkey; and when I drove up there, after Pa dropped dead so suddenly - and way too soon (at 65) ten years ago on 19 May 99 (never got to the Second Millenium even, though he did get t Alberquerque - in a hired car across the States, from Georgetown....), I SIMPLY COULD NOT BELEEVE....the daft undertaker who turned up thr following day, appointed, apparently, by Pa via a card left with the Solicitor.

Assigning Legal Power of Attorney - there are several levels of this, so it is important to take advice, the Citizens' Advice Bureaux being the obvious - and excellent - and free - first point of call. You may not need it. But, as we sub virgoes say, it is always best to be prepared so you don't have numpty dumpties or parish assistants running your affairs while you're out of the way for a bit.

I have said somewhere else on this blog - first post, I thnk, that we all start the day with an even playing field regarding survival - except, possibly, the real old fogies amost us, who obviously have far more shortened odds. (Or bloody well should have (nearly time to move over `never mind popping pills and expecting live to be 200...or woken up from the ice (Ugh) in twenty years!). I could get run over (increasingly likely since I keep falling over) or hit by a car on the drive up to Plym. And then the Coroner's Officer would come to my house and start poking through my knicker drawer ....ewwwww.don't even go there. Better to appoint someone you know, not perhaps a blood relative (it's hard on them) or a really close friend (hard on them too), but someone close to the bone -- my 2 POAs being the respective partners of my daughter's aunt/godmother and her father, to whom I have now, being throroughly impressed by his partner and the stability she has brought to his life, assigned Legal Joint Parental Responsibilty (in spite of Truro Court numpty (small n though - she did offer to make copies for us) reception the other day. We got the PR form stamped (Crown Court Offices have most of these forms); and I sent it and the copies up to the High Court (Family Division) in Holborn/London with a brusque note marked 'Priority' - and asking them to crack on with it. It came back the following day; and the Joint PR Father got his too. Is this a record, High Court Recorder? Must be. Thanks, anyway.

I've made a folder for each of my POAs containing their logs, some petty cash for incidentals like light bulbs, milk, the essential T bags), some of my personal stationery, and an old cheque book each, although I hope that they won't be paying out too much....I went into the Bank yesterday and told them I was doing it1. I also told them I couldn't stand, and they offered me a chair sitting with all the bankers. I have nothing but praise for the staff of RBS in Truro - could learn from their presenation and reception skills, numpty GP receptionists. Good business model. But bankers are corporate broads - so one is not supposed to say that....(Only bad thing about RBS now is the ferret- faced spectre of Sir Fred. (Gone to Earth like the fox he is....) We own the bloody bank now. It is in PUBLIC ownership. Let's challenge his pension pay- off in the High Court. Let's seek Damages! Come on Expert Counsel - Cherie Blai maybe???? -do it pro bono - for the whole nation. Make our nobe legal system work for the PEOPLE. Even if it's only just for cancer patients, for whom a little extra help with the bills out of Fred's pension pot damages would go a long way....).

I will go, with one of the POAs, to my other Truo Bank (Barclays Business branch is always quiet (er), and they always have seats - and free pens..I've got my HomeCare nurse onto that one. She always loses her pens...).

I will phone my Insurance Man in Newquay too today (the one who pointed me to an inspired Lifecare Plan with Axa Equity and Law ten years ago - they paid out without a problem, once oncologist had signed the forms..Within 3 weeks, in fact, so at least I could relax about my first line treatment (yukky chemo, etc) four years ago. Without having to worry too much about how I was going to pay for those organic juices, et al. More significantly, it covered the house accounts.

And I will phone my Solicitors to let them know about the POAs. I drew up my own Codicil last week and sent it into them - though haven't had any acknowledgement yet, in spite of saying an emil acknowledgement would be OK. Things can move kind of slow in Truro, if you let them....

That said, I have no intention of lading for the Brave New World on this Mayflower deal. I think this is simply an issue of EMPOWERMENT (empowering The Patient), that is); and it is vital to go into a cancer action (which this is - this is Operation Amageddon! - Zap those buggers, Doctors - Star Wars!)). I read somewhere that positive thinking (is that the Neuro Linguisic Programming deal ((NLP) spoken of by my dear. motivating friend, E?) can really boost your chances. You don't have to have had my immensely privileged education (Unis - four - Law School - well, for a bit anyway; teacher training, a period farting around the Wide World.....trying to write and supporting myself via a series of going nowhere jobs ike EFL and temping...). But you can all take charge of your affairs and not slide into being a 'victim'. Passive states aint good for the soul. Get active. Don't let the rellies crowd you out - they're worried, sure, and they want to do something (except the Parish Assistants, who tend to me wore worried about how cancer affects them - although I use the term 'affect' in a purely non- clinical way here. Parish Assistants don't have 'affect'. They are anal, Asperger types, fundamentally lacking in empathy and compassion. That is the whole bloody point. Some come on, GPs, kick em out of the NHS and support the Clinicians. Not to mention your own sodding patients.

Enough - but hey, I got through this without sliding over in bed. Steroids, Dr W. What the HELL did you put in them?


Anne Morgellyn


(Now I'm going for a long soak in my tiny bungalow bathroom with some of my new posh smellies ordered from Aubrey Cosmetics online. I just hope my posh pyjamas (Toast) arrive in time for Thurs. The matsctecomy wear (new undies from Amoena) arrived, as did the stationery labels (good to have sticky labels if you can't hold a pen... Vistaprint, although they pester you afterwards if you take up one otf their freebie offers (Bizcards free at I'm just waiting now for some non-slip shoes (Cloggs - on the internet - great deals on DMs) and a bale of new sheets (Empire catalogue online) so my friends can make me up a nice clean bed for when I get home. Oh, and I ordered another vacuum cleaner,....Had the old one ten years, and it works OK. But now, I think, I can do a little better.

And then it's just a question of seeing some old friends (and yacking with old friends - one called me from Australia yesterday FOR A WHOE HOUR....). When I told him I was going to ask the Brain Man to fix the tumour in preserving fluid for me so I could stick the jar in my sitting room as a reminder of the strange thing in my head that has GALVANISED me me with some sort of superfocused cognition (after swimming around in a mental fug of depression and lack of motivation...even despair, yeah, parish assistant: despair, Doc Reception numpties throughout the winter - although at least I know that I ain't going to Shady Pines.....). The other thing I want from Mr Brainsurgeon is some pix of the MRi Scan. I once saw some piz taken in an electron microscope of SPECTCULAR connections (neurones). Made me think about how much we lve in the medium here on earth - not all of us in numpty land, sure; but not in the macrocosm or the microcosm (nano land where all kinds of extraordinary processes take place....and an unimaginable level - or that is, imagined and reached for only by some very braining Brain People like Susan Greenfield (Baroness).

Great thing, the human brain....

And, I seem to remember that in Hannibal the Cannibal there's a scene where he sllices into somebody's brain and starts eating it while the man is actually having dinner with him!!!! (Oh gawd - at least it didn't seem to hurt...). I once did some reserch in community psychiatric lssisted living and met an amaxing man who had had a frontal lobotomy. This man's speech - his whole presentaion was quite 'normal' ('lucid' might be the word the GP who phone me - rather tentatively, after my Homecare nurse phone to say she was worried several weeks ago...); but then, suddenly, he broke into a kind of wierd Esperanto language (Cornish???) that made no sense at all.

CHIN CHIN. Let' have the other half now - as they say in the Navy!

AEM. 29.4.09

Saturday, 25 April 2009


..... Because I'm not so deluded as to believe this neurosuregon whom my oncologist is lining up for me is a woman. I don't care either. I'd cower in awed prostration if I met Susan Greenfield - although the Great Oxford Brain Barnoness and her theories about the brain being a fascinating, wonderful, untapped chemical soup leave me immensely excited. We should support the work of these SUPER brainy scientists (mapping the human genome etc etc/behavioural genetics) and share in what they are discovering about what makes us human (i.e. thinking beings, instead of numpties clowning in the stews of 'Britain's Got Talent' and 'The X Factor' (and GP Receptionist areas....). Britain's got Talent, alright. It' s got Dr W and his Team at The Sunrise Centre - and the neurosurgeon up in Plymouth (and please don't be numptyish about the cancer services provision at Derriford, Plymouth. If that is where you've got to go - then be grateful for it). They'll sort you out at the best place for the job. They're the ones we should be backing. Our Clinicians.

Anyway, before I sign off completely for at least the next few days - though I will now take the Macbook into hospital, unless oncologist advises against it...If don't get completely fried up in there, with Duncan and his men (and women) firing rads at me through their Linear Accelerators (- give it some welly, guys! Zap the buggers! ), I will try at least to read the blog, if not to post. My mentor at Artsmatrix, Lesley, is going to monitor it for me - and - I hope POST). Because a blog - especially a cancer blog, needs feeding with stories of experience, treatment, etc. Or just rant if you want to - I do! (How liberating to have a brain lesion. No one will ever know again if the rant is the tumour, ir if it's really me....I can go COMPLEETLY MENTAL.....I can be a grumpy old woman par excellence. Yippee...I knew it woud be good when I got to 50.

I want to dedicate this latest posting to my late grandmother, EDITH LOUKES. The second part of my psych thriller trilogy of novels (REMOVING EDITH MARY - is loosely based on her, although it's real subject is the human BRAIN (talk about art imitating life - oh gawd.....). What a woman Grandma Edith was, unlike the rest of my miserable, mean-spirited (God bothering) family back Up Country. And I have a feeling I am going to need her help.

She sat in the sitting room of the house she bought in Truro in 1947, after returning from a stint Up North during the War, where my late grandfather (Herbert John) was Reserved Occupation, the Electrical Engineer responsible for overseeing installations on merchant ships in Liverpool - during the Blitz too. But it was Grandma who always had the iron in the soul. They called their new Truro house 'Wentworth', partly because of her Yorkshire ancestry (she never, ever thought of herself as Cornish - even though she lived here over 40 years: "I am descended from the Earl of Strafford, love')), and partly because she was a super-keen golfer, Captain of Truro Ladies' team at one point - 'Though tennis,' she would say. 'Was my sport....' (She attended Wimbledon - as a spectator - every year till she was 85 and couldn't walk anymore.) She went deaf at 27 ('but never let it bother me..'; and as a Truro oldster, she campaigned to get lip-reading services set up for Cornish folk....). Then she got all the usual old people's things like cataracts and hip trouble and ended up near blind and almost immobile. Family Up North too busy bothering God via the CofE to bother with her. But her excellent neighbour, a retired Navy Nursing Matron ('have the other half, she'd say, pouring out a triple gin and tonic from the shaker - AND she smoked cigars!) gave me the key. I was in transit down to Cornwall on a BBC commission to make a film about fishing in St Ives....well, really, it was to shoot background footage for a 'video Diary' for the CPU about some hard-nosed TV reporter (me...although I was more of a field producer/researcher in those PBS jobs...), moving to Cornwall to take up the slow life with a local fisherman. He didn't work out - beat me up, in fact, something which never happened to me on all my world travels. Even when I interviewed some Russian Mafia in the insalubrious parts of Moscow). Anyway, I found my grandma Edith in the shit (literally...the downstairs loo had backed up something shocking;) and slowly started engaging with social services, local GPs, etc, to sort her out. In those days, the GPs at the Practice did come out - during the night even - whenever I rang and spoke to them - and I got put through straight away. In fact, I think the night doctors answered the phones themselves. There are a few senior doctors at that Practice who may remember the eccentric Mrs Loukes of Treliske Lane. Once, I came up early from St Ives on the morning coach (I couldn't even drive then - I never needed to drive in London and Paris), and I found a snaketrail of blood in the hall that went into the kitchen and splashed up the wall, making a pretty - if sobering - effect on the blue-grey tiles. Grandma was in her nightdress in the sitting room, her whte hair caked with blood. The house was freezing, but there were a number of unopened meals on wheels boxes sitting on the kitchen table by the indivudual payments which my grandma's POA, the excellent Hazel, had placed there at the beginning of the week when she called in. 'You've had a bump on the head,' I told grandma when she saw me using the telephone. The paramedics said it looked worse than it was, 'because these scalp wounds bleed profusely'. But they still took her down to the old Truro City Hospital Casualty (now a property development) for stitching and assessment, grandma putting the fear of God (the hex of the evil eye. probably) into the poor Spanish junior doctor who came to examine her. 'I've been to Seville,' she told him. 'I' can't complain dear. I've been in every capital in Europe....'

She died a few months later at Penrice Geriatric Unit, after a consultant geronitian did a domicilliary visit and told me straight that there was no way on earth my grandma could remain at home, even if I moved in, or a nurse moved in, or anybloodybody moved in. So we packed a bag and waited for the ambulance to take her up. When it arrived, grandma sat staight up in that chair, looked the ambulanceman in the eye and shouted: 'No!' 'We can't take her if she doesn't want to go,' the head man said to me. 'She'd have to be Sectioned.' No way was I having that, so we concocted a little white lie about taking her back down to City where the handsome Spanish doctor was going to take her stiches out. 'She'll have forgotten all about it when she gets in the ambulance.' the crew said happily. 'But don't come up to see her for at least a couple of weeks. Give her chance to settle.'

Couple weeks later, Hazel (her friend) drove me up there; and Grandma had been transmogrified. Cleaner, quieter, certainly, and thinner. Cared for yes - and very well. But her spirit had already sllipped its anchor. She never spoke again - to either of us. But she wouldn't watch the telly either, and there were none of those awful wee-smelling old folks chairs in that hospital, as far as I remember. Two weeks after that, I got a call to say she had pneumonia, and so I called my father in Cheshire and went up to Snozzle on the train to meet him there. Grandma was unconscious when I got there, and I wished her godspeed for that last journey - the one we all got to make, and make alone. Yes ALONE - no mobiles allowed! Fake boobs (- Jordan/aka Katiewhatsit Mrs PeterPlonker, please take note - ) explode in crematoria, so remember to take yer implants out before you go beyond the velour curtain in your pinky-winky princess-line box...

VECHNAYA PAMYAT' (RIP): EDITH LOUKES - 5 October 1905 - 12 MAY 1992

Anne Morgellyn. 25.4.09

Friday, 24 April 2009


And another link to the truly inspirational Fanny Burney, writer, thinker, and mastectomy patient. Fanny Burney had a radical mastectomy in the late Eighteenth Century (the surgeons put a handkerchief over her face and told her it would be better if she let herself scream.....). She survived, not just the operation - in those days before sepsis was even thought of - let alone MRSA., but the disease.....

Old age got her, I think, as it will get us all.

You may not hear from me direct for a bit -I am preparing to go into hospital. But you will hear in due course, and I hope to get the blog updated (why don't you update it with news and thoughts to share about BC? All of you that is - Warrior Women, Nurses, Oncologists, Surgeons. Even that Radiographer who managed to cannulate me for the MRI Scan other day ('you horrible man,' I told him: 'You said I wouldn't need the Contrast injection.....' After that, he made damn sure he got the line in me first time....)

Go for it.

Copy link into broswer and click.....


Follow this link to the Amazons. The greatest of all the matectomy-warriors. Let's give the Juicy C Boob Jobs Brigade a run for their money...

Copy link into your browser and CLICK ON.....

Thursday, 23 April 2009


Just posted a bit about St George's Day (England's Patron) on the Intertalea blog (see link from my Morgellyn profile); but I see there's a use for him here after all, as well, since, apparently, he has one of those healing applications (disease). It all helps. If no one else celebrates his Day in England, thenI will!!

Here's his link to copy and paste into your browser, if interested. Quite interesting really.


Came across this promising little number in a magazine I was sent from Cornwall Hospice Care:


"Girls just wanna have fun - so our Midnight Walk is back by popular demand....Last year saw 200 women take to the streets of Truro at midnight decked out in flashing bunny ears and any anything else that glowed. All their hard work raised an amazing £33,000

So, ladies across Cornwall, don't forget to mark Sunday 26th September in your diaries. There will be two walks: Midnight Walk at 1-2km and Midnight Madness at 15km - both starting and finishing at Truro College. Whichever walk you choose you're guaranteed to have a fun girly night out.

Registration for Midnight Walk...will open in the summer. To register your the fundraising office on 01726 67012. The regsitration form will also be available to download from our website


SO GO FOR IT, GIRLS!!!!! GO, GO, GO.... (I've got an honourable discharge - brain tumour - so I aint going, but I'm with you in spirit!!!)

Tuesday, 21 April 2009

Standards of Care for people with secondary breast cancer


Dear Breast Cancer Voice,

Standards of Care for people with secondary breast cancer

I am contacting you as members of Breast Cancer Voices who are all keen to comment on our secondary breast cancer campaigning work. We have recently drafted a set of Standards of Care for people with secondary breast cancer which we would very much appreciate your comments on. I would very much appreciate your comments by Thursday 30 April.

The Standards of Care are for people with secondary breast cancer and the aim of them is to:

Make them aware of the care they should be receiving
Offer suggestions as to how to get this care for themselves
Explain how they can become a ‘champion’ of the standards in their area and get involved with their cancer network to improve care for themselves and others with secondary breast cancer (if they want to)

As you all know we produced the Secondary Taskforce final report last November and in essence this is a version for patients. We see part of the campaign of implementing all of the Taskforce recommendations is giving patients the tools to be able to influence change locally. Hopefully it should empower patients and also give them the knowledge to be able to campaign if they want to.

The standards will be produced in two formats: a ‘Taking Action’ booklet and a summary leaflet.

I would welcome any comments you have on the Taking Action document – in particular:

Do you have any other suggestions about how patients could influence change locally?
I would like to include as many quotes and case studies as possible from patients and healthcare professionals throughout (see blue text). If you have experience relating to any of the issues highlighted in this document please do share this with us and make it clear if you are happy for us to use your quote and name in the document.
Now the Taskforce has ended we are looking for a new name for our secondary breast cancer campaigning work – any suggestions would be very welcome.

In terms of dissemination, the leaflet will be included in our secondary breast cancer resource pack and patients will have to contact us for the ‘Taking Action’ document.

Also to let you know we will be launching these documents at two events:

in Scotland on the 4th June at Scottish Parliament
in England on 16th June at the RussellHotel, London
Breast Cancer Voices will be invited to these events – please look out for more information and keep these dates free.

If you have any questions please do get in touch. Thank you in advance for any comments/or feedback on this document you are able to give, it is greatly appreciated.

I look forward to hearing from you.

Many thanks and kindest regards

Vicky Lane

User Involvement Manager

Breast Cancer Care

5-13 Great Suffolk Street , LondonSE1 0NS

Direct line: 020 7960 3447 Switchboard: 0845 092 0800

Registered charity in England and Wales 1017658

Registered charity in Scotland SC038104

Registered In England company no 2447182

Secondary Breast Cancer Taskforce

Breast Cancer Care’s Secondary Breast Cancer Taskforce has published its findings and recommendations to improve the treatment, care and support for people with secondary breast cancer . Breast Cancer Care will now be taking the work of the Taskforce forward. To read the final report and other materials visit

P please consider the environment before printing this e-mail

Breast Cancer Care

Company limited by guarantee.
Registered office: 5-13 Great Suffolk Street, London SE1 0NS.
Company registered in England and Wales: number 2447182.
Charity registration numbers: 1017658 in England and Wales, SC038104
in Scotland.

This communication and the information it contains is for the use
of the intended recipient(s) or organisation named above only. It
contain information that is confidential or legally privileged and
protected by law. Unauthorised disclosure, distribution, copying or
any action taken or omitted as a result of this email is strictly
prohibited and may be unlawful. If received in error, please inform
the sender and then delete it.

Sunday, 19 April 2009


Three weeks ago, I ws diagnosed with a small brain lesion, following months of to-ing and fro-ing to the GP Practice, trying to get help for a number of viruses. That'll teach me!

Oncologist - brilliant as ever - has fired my belly with steroids, and I am determined not to be floored at the last post by some fuckwit GP receptionists with no education....If I can do this with a brain TUMOR, then at leat I can feel I did something.....



'It is high time that this culture of poorly-trained personnel and inadequate systems that are undermining the excellent work done by Clinicians and Practitioners within the wider community in Cornwall be exposed for what it is. As an example of good practice, I would recommend Plymouth HealthCare at Home as the type of efficient, courteous, and fundamentally intelligent (and deniability-free) service that should be open to all NHS patients, not just oncology patients like myself receiving long term palliative treatment at home. I have spoken to many patients of your GP Practice at 27 Lemon Street Truro who have been systematically fobbed off by the incompetent clerks in your reception area. This would not happen in the private sector (‘’You’re fired!); and it should not happen in the NHS, affecting the lives of vulnerable people - many far more vulnerable than I, who are unable to defend themselves. With the GP Patient Survey well underway, I expect you shall be hearing from the Health Authority, and I will also forward copies of my dossier to my MP. ....

There are other, Public Health issues too, which I will make widely known about your Practice management. The last time I waited over an hour in your downstairs waiting room (with a witness, who accompanied me) the lavatory was backing up with a foul smell from the drains seeping into the germ-filled, airless room. Completely unacceptable. The upstairs reception area is exposed. shabby, dirty, mean-spirited, lacking in privacy - hardly a place for the sick! The last time I stood waiting to book in upstairs, the receptionist saw me waiting then turned - ostentatiously - to make a phone call. This was after I had promised Dr Boyle I would come down to surgery (even though I had laid at home in bed for the best part of a week). I waited over half an hour (with 2 further checks with reception to sound out reasons for the delay - because I was feeling dizzy and unable to stand). I told the Doctor, when he eventually came to fetch me, that I simply could not do this any more.

That said, the only congruent response to my complaint I have had from the Practice so far has been via a personal telephone call to me yesterday morning (albeit a week after the events of 7 April) from the courteous and concerned Dr Boyle. I told him that it is a great pity that his care of his patients is being so systematically compromised by your shabby, excuse-riddled band of clerks. And, for cancer patients, it is an even greater shame that the work of The Sunrise Centre, a centre of clinical excellence in Cornwall, is being compromised by people with no medical training whatsoever (and, apparently, very little clerical training, even in something as fundamental as basic email systems!). These are the sort of people who enable sinister administrations to push the sick and vulnerable into the gas chambers - well, not me..'.