Topic of Cancer

PIPS AND SQUADDIES

2012-02-02T10:14:00.000-08:00

My take on the Pips story (faulty French breast implants used by cheapskate cosmetic surgeons) is about the same as my take on the stream of young men Serving Their Country in Afghanistan: pointless, wasteful, and vainglorious.
   As someone who had breast surgery as a first line defence against cancer, I just can't understand why anyone would choose to have their mammary appendages messed about with in the name of body enhancement - for pleasure,  be it their own or to please other people. The body isn't a piece of fashion: it is a natural gift, and we mess about with it at our peril. Why have breasts always been problematic for women: not big enough, not small enough (see 1920's), not round enough? They are only problematic when they're not functioning properly, as in failing to feed babies, or so heavy that they cause breathing problems, or when they threaten survival, as with cancer. Any other 'problems' are just vanities; and it is vanity alone, not psychological disorders ('bad body image/low self-esteem') that prompts women to visit private clinics to have their boobs inflated. They pay to have the implants in, and it is only fair that that they should pay to have the implants out. The suggestion that the NHS take them out at the taxpayers' expense is scandalous and morally abhorrent, especially in a time of austerity and cuts to the Service. For every Pip that gets taken out in an NHS hospital, another bona fide patient, awaiting breast reconstruction after mastectomy, say, is kept waiting.
  As for the young Squaddies, they choose to join the military; they aren't conscripts who have no say in the matter. It seems like skewed thinking to me to propose building hostels where the relatives of injured career fighters can stay while their soldier is having his false limb fitted. Instead of hostels for the rellies, we need hospices for the chronically ill and bereft, who have no choice with regard to their condition in life.

   I had a go at the false boobs culture in an early post on this blog when the revolting Jordan (aka Katie Price) was at the top of her game. I can't remember which post it is, but there was something gruesome in it about false fillets exploding in crematoriums (sorry). We are all headed in the same direction, towards the inevitable ending, and if we can't get that, and inwardly digest it, our lives are not worth living.

image by Agnes Toth
http://www.agnestoth.eu

ITHAKA

2012-01-14T07:36:00.000-08:00

This morning, I came across this poem in one of my old notebooks. It struck a strong, deep note of recognition in me, as though I had stored it away for the cancer journey, before I even had cancer. I'm going to send it to my daughter:

Ithaka

As you set out for Ithaka

hope your road is a long one,
full of adventure, full of discovery,
Laistrygonians, Cyclops,
angry Poseidon, don't be afraid of them:
you'll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon - you won't encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.

C.P Cavafy

FIGHT BACK WITH FITNESS

2012-01-11T13:18:00.000-08:00

Guest Blogger, David Haas, at Mesothelioma Cancer Alliance, has kindly sent me this article about fitness and cancer. Check out David's profile at http://about.me/haasblaag
- he's inspirational.

"Fight back with fitness - Ways to Boost or Maintain Your Exercise Routine”
The MD Anderson Cancer Center at the University of Texas has the slogan Making Cancer History. They, along with many other cancer researchers, mesothelioma doctors, and physicians believe strongly that exercise can become a powerful tool in your effort to fight cancer. Whether you've been diagnosed with breast cancer, mesothelioma or any other form of the disease, your diagnosis doesn't have to become the end of your fitness routine. If you were active before and enjoyed the benefits of being physically fit, then you already understand how important exercise is to the body and the mind. Here are some tips to keep your exercise routine going, while incorporating a little fun into your life.
* Take a Class
The local YMCA, fitness or community centre is likely to offer a variety of exercise classes you can participate in. While participating in class you need only exert as much effort as you're able to that day but will still reap the benefits of moving your body, getting out of the house and being around other people.
* Dance
Whether you dance at home or take a class at a local dance studio, the combination of music and movement is good for your body and soul. Choose a style of dance that revolves around upbeat music, such as disco, salsa, or jazz dancing. Dancing is a great total body workout and the music helps lift the mood.
* Spinning
Spinning on an exercise bike at home or at the health club is excellent aerobic exercise. If moving your legs gets difficult after a while, alternate between the stationery bike at your health club and the arm bike.
*Favourite Exercise DVDs
Remember the old exercise video tapes of the 80s and 90s? Many of them are available on DVD and can be fun to work out to at home.

As exercise increases your fitness, it can help you reduce or avoid experiencing side effects from chemotherapy and other cancer treatments. The support and camaraderie experienced while taking an exercise class is also beneficial beyond measure, providing you with a physical outlet and surrounding you by friends and other people with whom you can talk. Thirty minutes of exercise daily can provide you with an improved emotional state, while maintaining flexibility, mobility and your aerobic health. Mesothelioma doctors and other physicians recommend incorporating exercise into your daily schedule as part of your artillery to fight back against cancer

David Haas

Citation:
http://www2.mdanderson.org/cancerwise/2011/02/fight-cancer-with-fitnesstips-to-amp-up-your-exercise-routine.html
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Anne Morgellyn comments: I can vouch for the value of exercise on the way to recovery - although it was a good eighteen months post treatment before I was able to undertake anything more strenuous than a walk to the bathroom! But just before Christmas, I signed up to Marcus Santer's online Qigong course, highly recommended to me by my singing teacher. I have to confess that I have so far mastered only one exercise - but spending only fifteen minutes a day on this gentle medicinal workout has significantly improved my balance and general energy levels.

Marcus Santer can be found on Google or at

http://qigong15.com/blog/qigong-training/about

HAIR CLIPPINGS

2012-01-10T06:48:00.000-08:00

The acupuncture I had post-surgery did a lot for my nausea, balance, and energy levels; but the little copper needles in my scalp, in spite of the therapist's best efforts, have so far failed to stimulate my hair. I am now resigned to male-pattern baldness as a lasting legacy of the tremendous bolt of radiation I was given to mop up any rogue cells remaining after the second craniotomy. It has been well over two years now, and, although the back and sides have been growing slowly but surely, my tonsure still refuses to sprout.
Tired of trimming the new growth with nail scissors to match the non-growth on the top, three days ago I ordered some electric hair-clippers from Amazon, which arrived this morning. At first, I was too terrified to take them out of the box, but once I'd found the right gauge for beginners (a series of colour-coded safety combs), I oiled the blades and gave it a whirl. An hour later, I had a perfect Sinead O'Connor cut and a fresher-feeling in my scalp, enhanced by Neem Hair lotion from Dr Hauschka. Now I know how boys feel when they get a new gadget: excited, thrilled, can't wait to use it again.

Since I've been in recovery, I have ordered a lot of stuff from Amazon, all of it good and speedily dispatched. I've had bathroom shelves, a phone, a digital radio, vacuum cleaner, a pad to stop my laptop sliding off my knees, tiny trolley cases guaranteed to satisfy the stringent cabin baggage allowances of EasyJet and Ryanair, a watch, an opal ring for my daughter's Christmas present, and numerous books and CDs. I have the entire collection of Thomas Mann, whose novel 'The Magic Mountain' (Der Zauberberg), has to be the best book about chronic illness ever written, taking in philosophy, the tensions in Europe before the Great War, and perceptions of time, expanding and contracting as the seven years of Casthorp's sojurn in the sanatorium go by. Jeanette Winterson was on the radio this morning talking about the solace which reading can bring to a troubled soul. How that resonated with me as I was reading 'The Magic Mountain' again in the early days of my recovery. Now I'm reading Dostoyevsky's 'Brothers Karamazov' again, for the umpteenth time, and it too seems to have a greater significance for me in my cancer years. The other great soul feed, perhaps the greatest, is music. As I write this, I am listening to Verdi's Requiem, for which I begin rehearsals this evening with Truro Choral Society.

In the meantime, the Amazon courier has just delivered another package, and I have a book case to build.

YEAR'S SUMMARY

2011-12-10T09:33:00.000-08:00

I haven't posted much this year because I have finally been getting my life back together. (Significant developments listed below.)

1. I am driving again after a two year suspension following my brain surgery in 2009 (it will be three years this coming March since I received my second diagnosis of Ca to the brain). My consultant passed me fit to drive in May this year but his report is still with the medical team at the DVLA. They apparently have a very long back-log, implying that there are a lot of people with brain tumours and other neurological disorders applying to take to the highway again. They did, however, give me permission to get behind a steering wheel while my application is pending, so I've been rediscovering Cornwall in my baby Mercedes - a brand new Smart I'm leasing in exchange for the mobility component of my Disability Living Allowance. Every couple of weeks or so I contact the DVLA about the progress with my new licence but they keep on reassuring me that I am covered by the note they sent in May. I doubt I'll be getting the real deal, mug-shot and all, until well into 2012.

2. I'm travelling again, this year to Budapest (seventh visit coming up in February 2012), Milan and Como. I also met up with my mother for a week end in Bristol in the summer. I hadn't seen her for well over two years because she abandoned me after my second diagnosis and extended hospitalisation in 2009. I was dreading meeting up with her again, but my daughter thought I should, so I did. In fact, it turned out very well because it cured the emotional mess and bitterness I was stewing in and showed me that I'd got through all this on my own (with a lot of support from my friends - gratefully acknowledged) and didn't need to depend on maternal bonds that were never there before in any case. My mother and I have a tentative but mostly positive relationship now via e-mail.

3. I am writing fiction again and have just completed my fourth novel, Not Waving but Drowning, which should be out next year.

4. I am teaching again for the Open University.

5. I am singing again and have resumed my weekly lessons with my teacher in Redruth - the excellent Joyce Robson. When I went back to Joyce and she coaxed out my voice from the place where it had lain dormant for the past two years, I felt myself filling up with joy and exaltation. Singing is the best healing present I can give to myself.

6. I need fewer hospital visits. In October my consultant put me down for six monthly clinics (instead of three) although I am still having three-weekly infusions of the miraculous monoclonal antibody. Herceptin - this will be my seventh year on this drug, and I am still taking Tamoxifen. Dr Wheatley told me he had no way of knowing if the treatment was hitting anything now or if I was cancer-free, but being a cautious man, he's keeping me on it. He didn't want to give me another MRi scan because he said he'd just done that with another patient at a similar stage to me and the 'poor bugger' had been suspended from driving again after just getting his licence back! Duncan Wheatley saved my life in 2005 and has kept me going since with all his lotions and potions (see previous posts in 2005/6/7/8) His swift intervention with emergency steroid treatment when I was falling down all over the place (spectacular fall outside the US Embassy in London) and his referral of me to Mr Paul Fewing, neurosurgical consultant at Derriford Hospitial saved my life again in 2009 because without Mr Fewing and his team, I would have been dead by July that year, instead of recovering in hospital. It's been a very long and very laboured recovery. Was it worth it - yes it was. I'm still here.

I hope to be writing about these developments in forthcoming posts for 2012. Some of them - especially the car/driving story, are quite light-hearted! In the meantime, if I still have any followers left after this long, long hiatus, I wish you all a very happy Christmas and a healthy new year.

Anne Morgellyn

2011-01-25T10:23:00.001-08:00

http://lazarogym.es/2011.php?ID=gh02

BLUE MONDAY WEEK

2011-01-19T10:06:00.000-08:00

Although I have the greatest admiration for my new GP, who is of the type that goes an extra mile for the sake of his patients, he is the exception rather than the rule these days. It is extremely worrying to hear of the Coalition (aka Tory) government's proposals to give GPs more responsibility - and buying power - in another iniquitous shake up of the NHS. People living in the community with long term chronic conditions (like secondary cancer) are poorly served as it is, going by the many complaints about their GP practice I hear from other patients. I resolved mine in the end by switching practitioners, but that was only after I nearly died because of the previous GP's misdiagnosis of my brain lesion as 'labyrinthitis'. It was fortunate I had a hospital consultant to go to then to sort out the mess, for in the insouciant hands of the other guy, I'd have been long dead by now. Others I knew, ill served by this same bad Practice, were not so fortunate; they all died from lack of proper referral procedures in place for them to access a specialist.

I posted a warning about voting for the Tories in 2008 on this same blog. I see no reason to change my opinion of them now they are in power and, according to the BBC, will just have time to bugger up the NHS before the next election. They are seriously bad news. It is astonishing how a group of upper middle class white men, sheltered by privilege all their lives, can so easily wreck the welfare policies that were hard won by the British people over the years, and which, for all their flaws and abuses, have created a better quality of life for us all. What does Cameron mean by his 'big society'? I suspect it's a cockeyed, Old Etonian take on the concept of noblesse oblige in which the poor are served by Conservative ladies handing out food and clothes to the 'deserving' while their men in government tax the recipients, if they can, for the benefits of the gifts.

As things stand, I continue to rely on the NHS for treatment under my excellent hospital consultant, who deserves every penny of his colossal salary, juggling his budget, as he does, not to make money for a bunch of City suits who don't need any more dosh, but to keep people like me alive until the next election. Go Labour!

NHS

BATTLE FATIGUE?

2010-11-22T08:57:00.000-08:00

Since I last posted in March this year (nine months ago...), I have been learning to make a friend of fatigue in order to boost my recovery. Boost is the wrong word, perhaps, because the recovery from last year's treatments to a state of much better health has been slow and long. But I have gradually felt stronger these last few months, thanks to the return of my appetite and the steady increase in energy that is enabling me to do more things. When I say more things, these activities are still largely confined to the house and garden; but I can walk without the stick now, if not always in a straight line, and with frequent rests. I no longer feel sick when I'm out, and I even managed to get to Nice in the summer with the help of my daughter. That showed me there was life out there, beyond the treatments, and I could still invest my presence in the world with some quality of joy and verve.

I have learned to make a friend of my bungalow, which I disparagingly referred to as 'The Bunker' when I first moved in, this being a considerable down-sizing after my previous home ; but now I am reconciled to bunker living. This may be because I have always been a natural recluse, and perhaps a little too tolerant of my own company; but this has helped me adapt to the state of invalidism forced on me by the brain tumour. This got me thinking about invalidism as a state of enchantment from which only a shock, an external event, or the disease making a dramatic reappearance, can free me for action. The best account of this state is Thomas Mann's great novel, The Magic Mountain, in which a young man goes to a Swiss sanatorium to visit his sick cousin, a trip of three weeks which turns, through various twists and beguiling events, into a stay of seven years. It is a book to savour, and ideal for bunker living. In fact, since this summer, I have worked my way through several long novels, thanks to my renewed concentration. My consultant (the splendid Duncan) told me in October that I should have more years yet on the old continuing treatment of Herceptin (my lifeline) and Tamoxifen with which I am continuing beyond the usual five year prescription for this drug. So things have returned to three weekly infusions and daily tablet popping, and soon I will have lived like this for six whole years, which hasn't been all bad, really, excepting, of course,the horrors of last year's tumour.

Duncan told me that the funding for cancer treatments was protected, but implied that the new regime demanded that doctors complete a case by case application for each patient review. There was a pot of money but increased admin, and this sinister sort of decision making put clinicians in a terrible position: 'We haven't got the four hours it takes to fill in each form for each patient and I wish they'd just let us get on with our job in helping people.' He went on to say that in my particular case, he had 'absolutely no way of knowing' if discontinuing my expensive treatment would cause a sudden upsurge in disease process, or if indeed there was no more disease to treat; but he believed in erring on the side of caution and sticking to the current prescription. While the best news, of course, would be to hear I was cured, I know that, with advanced disease, I will never hear that from him, and so am well contented with the status quo. Thanks again, Duncan, and the neurosurgical team at Derriford, for giving me these extra enchanted years. I watched an old Storyville documentary last week about a British neurosurgeon who visits Ukraine twice a year to operate, gratis, on seriously ill patients with horrific and often visible tumours. The hospital there were using adapted Black and Decker drills to get into the skull, while the NHS trust at Henry Marsh's (the British surgeon's) London hospital was throwing away 'perforator' fittings, costing eighty pounds each, after every patient, a wastage of hundreds of thousands of pounds a year. But that was in 2007. Now we have the unholy alliance of Cameron and Clegg guarding the money, and I know it won't be thanks to them, or their policy towards the poor and sick, that will save the lives of people like me. In fact, had I developed this disease before the election last May, I wonder if I would have been put on the treatment I am now, thanks to Duncan, receiving indefinitely. One thing is for sure, I will never compromise my vote by strategic voting for the Liberal Dems again.

REMISSION

2010-03-07T07:30:00.000-08:00

Starting from around this time last year, I've just come to the end of a constant and relentless round of treatment:

-16 mg of Dexamethasone (steroids) daily over two months
-two craniotomies (surgery) to remove the tumour in my cerebellum
-further hospitalisation to treat meningitis arising from the surgery with nausea-inducing antibiotics
-15 fractions (doses) of radiotherapy to my whole head
- five MRi scans of my head
- one CT scan of my whole body
-hospitalisation for a further week on the cancer ward to re-hydrate me after the debilitating effects of these procedures

All washed down wirh

-three weekly infusions of Herceptin
-20 mg Tamoxifen daily

So when the latest MRi showed 'no sign of disease', and a good news letter came from my oncologist at the end of February, confirming that there was nothing in my brain to warrant further treatment at present, who can blame me for feeling I've been given some shining respite? There were times, of course, when I wondered if all this treatment was worth it, because I was bound to need more and more, especially after meeting many courageous people in the hospital whose disease had come back several times, each one more vengeful than before. Now I'm just grateful that I was offered this treatment and agreed to it and have somehow found the patience and strength to see it through. No, I am not the same as I was before this started. I'm not allowed to drive for at least two years because of the surgery to my head; but all that entails, in the final analysis, is finding alternative ways of getting about, as far as my energy allows. Everything is down to energy levels these days - a late side effect of the radiotherapy. But so it is with all ageing people, and I am mow past my half century. I am eating well again now, without vomiting, and taking taxis on my own into town, instead of relying on friends to fetch and carry me. My singing voice has returned (though much deeper and weaker) and I can play the piano again. I can even contemplate a holiday this summer with my daughter, having thought I'd never have the ability, much less the inclination to travel again. This time last year, I was almost at the stage where I lost the ability to sign my own name; now I am tackling the Arabic alphabet again, after twenty five years.

What am I getting at here? That there is light at the end of the tunnel, even for people with Stage 4 cancer. It being the nature of the disease to be capricious, I also know that this may not be the outcome for everyone; but I do know that taking each day at a time (which is about all I had the energy for anyway during last year's treatments) privileges the present experience above past regrets or future fears. As I wrote at the very beginning of this blog, a couple of years ago now, we all, including cancer patients, begin each day on an even playing field, equally human and equally alive. The faith we bring to each day is up to us.

SUPPORT FOR HAITI IN READ AN E-BOOK WEEK

2010-03-07T04:35:00.000-08:00

Pay what you like (or nothing at all) for twenty-five selected BeWrite Books ebooks in all formats during Read an Ebook Week from March 7-13. All income will go to the Red Cross effort in Haiti. Simply visit the BeWrite Books Smashwords.com page and scroll down through the catalogue: http://www.smashwords.com/profile/view/bewrite

Wear a Hat Day in Brain Tumour Awareness Month

2010-02-21T04:38:00.000-08:00

Brain Tumour Action are encouraging organisations, schools, colleges even local churches and pubs to pick a date in March and hold a Wear a Hat day for brain tumours and donate a pound (or more if they so wish) to go towards brain tumour research.

33% more children died from a brain tumour in 2007 than 2001

16,000 people in the UK are diagnosed with a brain tumour each year

More children and people under the age of 40 die of a brain tumour than leukaemia or any other cancer and five year survival is still only 14%

For more information please visit our website www.braintumouraction.org.uk or our partner's site at www.braintumourresearch.org

SNOWED IN

2010-01-08T06:10:00.000-08:00

As Britain shivers in twelve degrees of overnight frost, I reflect on how I can't really enjoy the novelty of being snowed in. I wish I could. I wish I could revel in it in a near-hysterical way, like the schoolchildren, especially those who look like getting a suspension of next week's GCSE exams. But I have been snowed in for the last nine months, dependent on kind friends for lifts to the bank and shopping and excursions to the coast. I'm like some old person now, afraid to go out on my own, scared of falling. I have got to shake this feeling off. I have got to stretch my spine and exercise my leg muscles. No, I may never be legally empowered to drive again, but I've got functioning legs that used to be ready to walk anywhere and no one, except me, is going to impose health and safety sanctions on them. I have got to get a grip.

Yesterday, my Herceptin treatment nurse trudged for forty minutes through the snow to my house, an enormous rucksack on her back containing collapsible drip pole, syringes, sharps box and drugs. The dedication of the vast majority of medical people I have encountered through this disease never ceases to overwhelm me, as does the stoicism of some patients, especially the dialysis group who have to attend at the hospital three or four days a week for four or more hours, with travelling time and hold-ups added on. Or the neurology patients who shared a ward with me for six weeks last summer; some had been there for six months, unable to sit up to read or eat. Being snowed in may impose some physical restrictions, but the real obstacle is the state of being. If you make being snowed in your state of being, then snowed in you will be until you ice right over.

FAREWELL NOUGHTY NINE...

2009-12-30T07:38:00.000-08:00

It has been nine months or so since I last checked in with this blog, most of this time spent in or on bed, at home or in hospital. I have become very acquainted with the oak tree outside my window, which I managed to rescue from decimation last year (I think there's a reference to the tree battles in the Intertalea blog), and which, consequently, reminded me of the cussedly tenacious bugger I can be when I can steel myself to keep on going.

But I seriously underestimated the power of side effects after two craniotomies and 15 doses of radiotherapy, washed down with a month or so's worth of strong steroids and a raft of antibiotics, given to check the bacterial meningitis I contracted after the first lot of surgery to my skull. The surgery left me wobbly-kneed and knackered. The steroids turned my face into a yellow moon, unable to tolerate my contact lenses. But the radiotherapy to my whole head was like going ten rounds with Mike Tyson, only wearing feather gloves since it isn't painful exactly just debilitating to the point of complete exhaustion. I was so tired, I couldn't eat, and this led only to dehydration and more hospitalisation in August. I soon perked up on the cancer ward, however. We were on the same journey after all; and all I can give to the fellow patients and patient staff I encountered in both Derriford and Royal Cornwall Hospitals is heartfelt thanks.

Boxing Day saw me, my daughter, and two wonderfully supportive friends at Hexworthy Tor on Dartmoor, which exhausted me but showed I could walk on the grass again without falling over. This morning, I played the piano and sang a bunch of folk songs without gasping for breath or embarrassing myself too much. This spring-like renewal of strength may be down to the acupuncture I've been having recently. But maybe it is down to the hope I have been so bad at summoning these last dazed months. I know that I am lucky to be alive still and have something to live for.

Thanks to all the friends who have thought of me and asked about me these past months, including readers of this blog (and especially Lesley!). I believe such positive thoughts and prayers work on the level of a mystery that no one can understand, and it is futile to try. But I have benefitted positively from these thoughts and prayers, whatever I may have done to sabotage myself with doubts and not-eaing. I have been well taken care of, from the most senior consultations to the trips to hospital and back with the marvellous, selfless volunteer drivers and a great many nurses, radiographers, fellow patients and friends in between. I wish you all and every one a happy, prosperous and healthy new decade.

Update on Anne

2009-05-10T10:09:00.000-07:00

I've heard from Anne, here are her words for all of you:

"I had a 6 hour craniotomy (brain operation) to remove a tumour. I woke up in Intensive Care Unit and heard the neurosurgeon shouting, 'Anne, Anne. We've got it.'

So it all turned out right in the end!"

She's already checked the blog and seen the posts, she'll be back with you soon no doubt.
Lesley

writers and anxiety

2009-05-05T02:03:00.000-07:00

Sometimes it seems to me that anxiety is the writer's disease. The key question for anyone suffering from an anxiety disorder is almost always What if? So: What if the lift doors don't open? What if I panic in the middle of Tesco and make a fool of myself? What if I forget to count the lampposts and something bad happens as a result?

Well, isn't that what writers do? We put our characters into situations and ask - what if? What if the embarrasing mother costs Jane Bennett her chance of happiness? What if an evil person persuades Othello his wife is being unfaithful? What if a modern cop travels back in time to the 1970s?

And so many writers have said openly that anxiety has troubled them personally in various ways, it's almost as if we need that anxious edge to drive our writing.

So, my question is, since many writers have experience of and insight into anxiety, why aren't there more characters in literature with anxiety disorders? Where are the agoraphobics in Shakespeare, or the panic attacks in Dickens? There are some in the Kingsley Amis oeuvre but not much else. Or have I just been reading the wrong books?
Lesley

help for anxiety

2009-05-04T09:47:00.000-07:00

I was talking to Anne about my life outside writing (or what used to be my life outside writing, of which more in a minute) and she wanted me to post something about it on the blog. Part of my other life is that I’ve been involved, for some years, with various charities that help people cope with anxiety disorders, and I’ve worked with quite a few people as a mentor trying to help them overcome panic, phobias or obsessive compulsive disorder.

The techniques used are a combination of commonsense and cognitive behaviour therapy. The commonsense is stuff like getting enough sleep, eating well, cutting down caffeine and nicotine (which both make anxiety worse), taking aerobic exercise and learning relaxation and breathing techniques.

The CBT works by changing both behaviour and thinking (which is the cognitive bit).

It is fair to say that people with anxiety disorders are being plagued by irrational worries, whereas someone with breast cancer has a perfectly rational set of worries. Still, the techniques could be useful for someone trying to stay calm and maintain their quality of life while dealing with their breast cancer.

The other thing that can happen is that sometimes people develop an anxiety disorder as an aftereffect of a traumatic event, so that someone could make a good physical recovery from breast cancer but find that their mental health was affected by what they’d been through. Again, the techniques could be useful.

I’m currently involved with an anxiety charity called First Steps to Freedom, which runs a helpline every day, including weekends, from 10 am to 10 pm on 0845 120 2916. Anyone can phone for help and support with their anxiety, although the main focus of the charity is anxiety disorders.

And of course after more than 10 years of doing this voluntary work I found myself writing about it. The book is called Free Yourself from Anxiety, by Emma Fletcher and Martha Langley (Martha is my pen name). It’s on Amazon, and most libraries in the country seem to have a copy.
Lesley

YES, NO OR DON’T GIVE A DAMN?

2009-05-01T02:40:00.000-07:00

I’m getting the hang of this blogging business now – not exactly rocket science, which suits me fine. But now I find myself wondering, how do all you readers feel about me taking over? After all this is a blog by and for breast cancer sufferers. I don’t have breast cancer. Does it spoil things to have me here? Do you welcome a different perspective? Or do you just not mind either way? Leave a comment, let me know.
Lesley

harnass the power of thought

2009-04-30T02:05:00.000-07:00

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.

DON’T EVER UNDERESTIMATE YOURSELF

2009-04-28T12:04:00.000-07:00

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.
Lesley

Hello from the Newbie

2009-04-28T03:16:00.000-07:00

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...

INTO OPERATION (Action Planning)....

2009-04-27T23:51:00.000-07:00

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 www.intertalea.blogspot.com 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?

I DEDICATE THIS WHOLE BLOG TO MY DAUGHTER. RISE AND SHINE GIRL. RISE AND SHINE! xxx

Anne Morgellyn

p.s

(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 Vistaprint.com). 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

TIME TO MEET THE BRAIN MAN....

2009-04-25T22:07:00.000-07:00

..... 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 - www.bewritebooks.net) 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

FANNY BURNEY - RADICAL MASTECTOMY SURVIVOR

2009-04-24T22:55:00.000-07:00

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.....

http://www.todayinliterature.com/biography/fanny.burney.asp

MASTECTOMY WARRIORS...

2009-04-24T22:51:00.001-07:00

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.....

http://en.wikipedia.org/wiki/Amazons

ST GEORGE'S DAY

2009-04-23T21:52:00.000-07:00

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.

http://en.wikipedia.org/wiki/Saint_George

MIDNIGHT WALK TRURO

2009-04-23T08:03:00.000-07:00

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

MIDNIGHT WALK 09

"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 interest...call the fundraising office on 01726 67012. The regsitration form will also be available to download from our website www.cornwallhospicecare.co.uk

(ends)

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!!!)

Standards of Care for people with secondary breast cancer

2009-04-21T11:54:00.000-07:00

THIS JUST CAME IN FROM BREAST CANCER VOICES....PLEASE COMMENT. TIMELY, INNIT??? WE NEED TO MAKE USE OF THESE SURVEYS TO CHANGE THE STATUS QUO....

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

vicky.lane@breastcancercare.org.uk

Breast Cancer Care

5-13 Great Suffolk Street , LondonSE1 0NS

Direct line: 020 7960 3447 Switchboard: 0845 092 0800

http://www.breastcancercare.org.uk/

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 www.breastcancercare.org.uk/secondarytaskforce

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
may
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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.

STATEMENT OF INTENT

2009-04-19T03:57:00.000-07:00

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.....

WHAT FOLLOWS IS AN EXTRACT FROM THE COMPLAINTS FILE I AM BUIDLING AGAINST THIS PRACTICE....CANCER PATIENTS REALLY SHOULD NOT HAVE TO DEAL WITH THIS SHIT....LET'S KICK SOME ASS!

'STATEMENT OF INTENT'

'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..'.

2009-01-26T03:01:00.001-08:00

http://news.bbc.co.uk/1/hi/england/7845426.stm

KNITTED BREASTS: A MASTECTOMY AID?

2009-01-26T02:50:00.000-08:00

An eighty-four year old woman from the South East has been knitting breasts to help new mothers learn how to feed their babies (BBC report). There could well be an application here for women who have had mastectomies, the knitted boobs being far cosier (and, strangely, more comforting) than the 'comfie' given out in hospitals post op. When I got my 'comfie' (this being the interim padding women are given before they are able to wear the custom-fitted silicone breastform), I was told I would have to weight it down with dried peas or shells (!) to match the hang of the remaining breast.

But I wonder if the knitted boob could be therapeutic - a way of coming to terms with the inevitable? Before my daughter was born, I spent hours on the sofa (with my late lamented labrador bitch), crocheting cot blankets and shawls (although these turned out to be somewhat redundant since the baby slept with me as I was breastfeeding her...). Had I known about the knitted boob pattern, I'd have adapted it for my own needs prior to the mastectomy. It might have proved a talking point at least!

Home run....

2009-01-24T11:18:00.000-08:00

On the clearway now to 50, and feeling marvellous! My nurse, Sarah, said it's the Time of the Crone: a stage where women can begin to be free of cultural crap like looking good to attract or please men (although I don't quite feel ready to let myself go along the frizzy hair and hairy armpits tack - not just yet) and confident in their exchanges, with an assurance that comes from life experience and wisdom. That's not to say there won't be plenty of stupid fifty year old women (what will Jordan-Boob-Jobs be like at fifty, I wonder? She's raddled enough at thirty...Look at Madonna, described by her latest ex husband as a piece of gristle). I'm grateful, simply, to be where I am: an Amazonian matron who has survived 4 years on palliative treatment for advanced breast cancer. To have seen my daughter mature into her teens in these difficult years and achieve a scholarship to one of the best schools in this country (and certainly the noblest) is quite enough. That is a life IN FULL. (And I have published 3 novels, with another on the way, and run a successful education business and - so I'm told - helped countless students along the way.) Not used to blowing my own trumpet. But this is what counts, surely, the legacy one leaves - not a major party with a load of freeloading guests who may or may not be good friends? Blowing money on immaterial (though expensive) ephemeral 'milestones' - like stupid white wedding jamborees - has always been a complete nonsense for me. It's not that I'm mean or that I don't celebrate my friends. On the contrary: I am deeply grateful to all my friends, especially to those who (unlike my mean-spirited family) came forward to support and comfort me when I was on my own and facing chemo for the first time; and I do try to show it whenever I can (I hope) - not just on my birthday. I hope my friends know how much I appreciate them. They know who they are. So if they don't get an invitation to a 50th birthday party from me in a month's time, I hope they will understand that I am celebrating quietly, just glad to have made it this far.

Best of all, yes, best of all: at 50, finally, I can liberate myself from the curse of my indifferent mother and from all those, in the now thankfully distant past, who have sought to undermine me or hold me back in some undefinable way. You won't be reading this, of course, so I could freely name you - but I can't be arsed any more! Yippee!

CELL PHONE HELL

2009-01-06T11:11:00.000-08:00

A great big Boo to the idiot policy makers who decided to allow the free use of mobile phones in NHS hospitals (with the exception of scanner and other high tech rooms, of course). As far as I'm concerned, this will make the prospect of a hospital stay - or even a clinic visit -even more unbearable, not to mention the fear of being happy-snapped by some fuckwit with a cameraphone ('I'm at the hospital....See this woman with her breast removed.... Cop this pic of the crash trolley...') It is usually visitors, in my experience, not the patients themselves, who are guilty of crass behaviour in hospital. This could be to do with fear, or a sort of superiority - a drive to prove they're not physically sick (though often mentally retarded). Whatever it is, they're a nuisance, and the use of cellphones is going to turn this nuisance into a downright menace - to other patients (who don't want this kind of chirpy intimacy and unwanted intrusion into other - banal - lives) and to staff, who are harassed enough by all the other beeping and alarms and twittering and whingeing that goes on.

Cancer patients, of course, are amongst the most vulnerable of all. I think we should join together to get this daft policy reversed. I'm all for designated phone areas FOR PATIENTS ONLY- but not a go-anywhere roving menace. That's asking for trouble.

ANOTHER YEAR

2009-01-06T10:56:00.000-08:00

This will be the fourth year of my palliative treatment, and the second of Herceptin at Home, which has proved not only beneficial to my health, but a pleasure in the company of the excellent team of nurses who come to sit with me throughout the infusions. I can make my own hot water bottle and sit in my own arcmchair as the drip goes in; and, with these nurses; it goes in first time - in fact, they managed to get through the whole of 2008 using the same vein. How differerent to the procedure at the Haem clinic at the hospital where those nurses, too, were unfailingly pleasant and patient, but harassed and overworked beyond their call of duty. Cannulations there took several attempts; and I rapidly became known as 'the woman with no veins', which doesn't exactly boost the morale of those designated to give the needle - not least to say my own morale (or amour propre). Anyway, the only clinics I have been to in the last 12 months were the Consultant's check-ups; and even in those, I managed to get away without being jabbed. In fact, the last cannulation attempt on me at the hospital was at the CT scanner, when even the doctor they called in to assist gave up when he saw my 'veinless' hands.

So Herceptin at Home it is, when I go straight from the piano (get the circulation in the hands and arms to work) to the chair. Nurses arrive when they say they will arrive and leave within 2 hours. This is private treatment, of course, although I receive it on the NHS, thanks to some deal between the Hospital Trust, Roche Pharmeceuticals (who manufacture the drug), and the healthcare company. Each dose of this drug costs at least twelve hundred pounds; and once the costs of the nurse and the equipment (cannulas, saline, etc) are factored in, that's a lot of cost! But it has saved my life. And I feel blessed and grateful for it.

Thank you.

TORIES TO CUT FUNDING TO HOSPITALS

2008-11-18T12:19:00.000-08:00

It's official: David Cameron announced today that the Tories would definitely make cuts in spending on schools and hospitals, should we be fool enough to elect them. We have all been warned!

God knows, Gordon Brown is a dull man, but my instincts tell me he's a man of principle and commited to a socialist (with small s) ethic of free health care at point of need and accessible higher education for all - should they want it. GB has a son with cystic fibrosis, and Cameron, also had a child with special needs. It stands to reason that, with Labour (Labour!) paving the way for a two-tier health service by allowing patients to top up their drugs fund (something I'm still not quite over the fence about), the Tories will tighten the financial screws on cancer treatment even more. Part of me is frightened by this. Part of me rejoices that they are not elected yet, and, until they are, we still have access to a reasonable spectrum of care choices.

PLEASE, PLEASE DON'T VOTE THEM IN AGAIN! I made the mistake, when a naive 19 year old, still at university, and tired of doing my homework in the dark nights of the 1970s, of voting for Margaret Thatcher (just the once...but once was enough). She's a woman, I thought. She must care. But that didn't follow, no more than it follows that Cameron cares for universal health care in this country because of the recent tragic loss of his eldest child, cared for so well at NHS Trust St Mary's Praed St. Never again.

As a note to this: I worked once at an inner London cancer unit (The Middlesex Hopitai), checking in patients on reception in thr morning, typing up notes and doing clinic filing in the afternoons - as part of a summer temping job while at University in London. This place was really Dickensian - but, even then (Thatcher's Second Term), the moves were well underway to dismantle the good old systems of Matron bug cont/total ward managementl, et al. Then the private cleaning r came in - and we all know wherwe that has led us. There were no drivers for chemo patients (and chemo was GRUESOME in those days....) The patients had to wait all day for an ambulance to take them out into the hinterlands of Middlesex itself....The only entertainment was a woman who had had the roof of her mouth removed, and when she took out the prosthetic soft palate (can't spell medical words...), it sounded as though she was in an echo chamber. Used to please the punters anyway. After a day at that place, you'd have been thankful for Simon Bloody Callow and his inane drivel on the X Factor...
NEVER AGAIN!

CRAZY CUTS

2008-11-14T12:10:00.000-08:00

A pop-up ad on my Tiscali mail page reads:

HAVE THE BREASTS YOU WANT NOW...AND PAY LATER.

And I'm sure there are plenty of takers in this crazy world who would put a bristling pair of new boobs on their wish-list for Christmas. (Credit crunch? what credit crunch?) Even as I write, the Tonight programme on ITV is running an investigation into those creepy-looking, pill-popping cranks who think it's their inalienable right to live to be 150. One anal-fixated, middle-aged male argues, in defence of the fifty plus supplements per day he's been taking for twenty years, that he aims to avoid 'the diseases of old age'. Is the unspoken one, the one that dare not say its name, a disease of old age? Try telling that to six year old with leukaemia or a twenty two year old with breast cancer and a two year old child to bring up.

Grotesque as they are, I feel mildly sorry for these cock-eyed opitimists who think cosmetic surgery can fix their lives. And what sort of life is one in which you feel obliged to 'restrict your calorie intake' (although the quack who came up with that popped his clogs at the not so ripe old age of 79) or spend your earnings on shed-loads of quackery? Imagine a society like that - a collection of grotesques in which old age doesn't begin untill you're ninety. I'm all for medicine fixing the body (it's fixing mine!), but not beyond its alloted span; and we would all do well to remember that the longterm tally for that is threescore years and ten. It's surely what we do in those alloted years that counts; but I guess I am giving this an unaccebtably moral overtone. Sad though, I think, that those eternal youth-seekers, fixated on 'eternal life', quite fail to see beyond the limitations of this world. It's materialism gone crazy - like a cancer.

The truth is, we are all dealt a certain hand. Some of us get cancer. Some of us don't live to get it because we die in road accidents or are murdered in the cradle by our parents. Do we ever get the breasts we want? The legs we want? The face we want? The height/weight/hair (curly or straight) we want? And when we pay to get what we think we want, we end up wanting something else entirely. That is, of course, those of us who can make those choices. (Credit crunch....what credit crunch?) If NHS funding for cancer care is the postcode lottery it is purported to be (though I haven't found it to be so here in my case....yet), and it came to the choice between spending money on breast reconstruction or some risky new life-prolonging chemo treatment, I think the choice is pretty obvious. In such a case, you'd get the breasts you want (for now, perhaps), but someone, somewhere would surely be paying later.

PINCUSHION AND BREAST CANCER CARE

2008-11-07T09:49:00.001-08:00

All royalties of my latest novel, PINCUSHION (BeWrite Books, www.bewrite.net) will now be donated to Breast Cancer Care. I hope, one day, that more can be done to support women living with secondary breast cancer, especially here in Cornwall, where there is no support gorup funding to date.

NO MIRACLE CURES...

2008-10-01T10:15:00.001-07:00

It is Breast Cancer awareness month, and the Tory Party are having their conference. David Cameron, their 'man with a plan' to lead Britain into better times, has pledged a 'say no' policy, predicated on a lack of 'miracle cures'. To what exactly? Gordon Brown may be a terminally dull and uninspiring leader, but the current parlous state of the economy has a Capitalist cause, its roots not in public spending but in the corporate greed of Cameron's cronies in the City. I fear a return to the 'values' of Thatcherism may prove toxic to the NHS, and to cancer patients in particular, reliant as we are on a tantalising, but increasingly expensive, cocktail of ground-breaking new treatments.

Take my own treatment, Herceptin. It remains expensive, due perhaps to the monopoly of its developer, Roche Pharmaceuticals. But it is the NHS that has made it widely available to people like myself, an NHS I saw repeatedly holed in its bows by the forces of Thatcher. That was the era when 'private' companies took over the cleaning operations within hospitals. The legacy? MRSA. That was the era that saw repeated cuts to all kinds of services, based on the Iron Lady's sub-Keynesian theory that 'there's no such thing as society.' Margaret Thatcher called open season on any service that was public, rather than private. Hers was the era of the Poll Tax, with residents of Labour Councils (i.e. those dedicated to public spending) paying three times more than Tory bastions, like Westminster, run then by Dame Shirley Cohen, who absconded to Israel rather than pay back the taxpayer the money she had accumulated by selling off public housing and even public cemetaries! (I was particularly unfortunate with my London Poll tax since my Camden (Labour) flatlet commanded a huge rate; a mere fifty yards away in Westminster, they paid a mere £80 per year because their Council had no more public services to spend its money on!) If Labour has messed up these last few years, it is only because it hasn't gone nearly far enough in rebuilding a Welfare State that was systematically dismantled in one short decade of Thatcher cuts and diktats. If Labour hasn't gone far enough to redress this balance by increasing taxation (such as the reintroduction of a supertax on some of the financiers, for instance, who have caused such havoc in the current economy), can we really expect Cameron, Son-of-Thatcher to help us cancer patients? Don't be fooled by the shiny red cheeks and winning smile.

In 1979, the first year I was able to vote, I fell for Margaret Thatcher's ralling cry during the Winter of Discontent. ('The British people can't bury their dead..') The great Tony Benn came to speak at my college at London University, and, to my eternal shame (mitigated, perhaps, by my youth and political naivety), I turned my back on him and voted Tory. Fast forward ten years, and the legend 'Third Term, Third Reich' appeared on the bridge at Chalk Farm. Fast forward to an era of greed and sleaze. And tax cuts, sure!

I don't think I would have been alive today if the Tories had been in government. And, were I still living in Central London, there would probably be no public cemetary left in which to bury me. It's bad enough seeing cancer patients fighting for life-saving/prolonging drugs today.(Even today, the BBC has reported the shocking story of a young breast cancer patient's fight for Avastin.) Tomorrow, if the Tories get in, I fear the lights will go out for good on the current Cancer Plan.

A Man with a Plan indeed. We have been warned.

NICE ADVANCED BREAST CANCER DIAGNOSIS AND TREATMENT

2008-09-04T14:51:00.001-07:00

HAVE YOUR SAY

The National Institute for Health and Clinical Excellence (NICE), the national organisation responsible for providing national guidance on promoting good health and preventing and treating ill health, is currently developing clinical guidelines on the diagnosis and treatment of both early breast cancer and advanced or metastatic breast cancer. These guidelines will help to shape how breast cancer care is delivered in the next few years and which treatments and care are available.

A draft of the guidelines was recently published and NICE is keen for people affected by breast cancer, or interested in breast cancer issues, to feed in their thoughts about the proposed draft. This is your chance to share your views on services and treatments and help inform a joint response from Breast Cancer Care and Breakthrough Breast Cancer. The charities are working together to develop a response to the guidelines, to help us make sure that our response represents the views and experiences of as many people as possible. The Advanced breast cancer guidelines are particularly important to the work of the Secondary Breast Cancer Taskforce and as members of the Reference Panel we would really like to hear your views on this guidance.

To inform our response, we would like you to complete a questionnaire on the topics outlined in the guidelines. The survey can be completed online at; http://www.surveymonkey.com/s.aspx?sm=5zNiZVqyJ95wSnzllJDy3g_3d_3d.

If you would like to read the draft guidance they can be found here: http://www.nice.org.uk/guidance/index.jsp?action=download&o=41615

The deadline for feedback is Friday 12th September 2008. Please return hard copies of the survey to Chris Quince, Policy and Campaigns Assistant, Breast Cancer Care, 5-13 Great Suffolk Street, London, SE1 0NS.

Please note that all responses will be shared with staff from both charities as part of our joint work on the consultation. However, all responses will remain anonymous.

BOOK RELEASE

2008-09-04T13:40:00.001-07:00

COMING SOON....

6th September – PINCUSHION by Anne Morgellyn.

The latest in a series of psychological thrillers that chart the adventures of Louise Moon and her precarious love affair with brilliant but unconventional pathologist, Chas Androssoff.

Performance artist August Stockyard, attention-seeking heir to a media and property empire, dies in typically theatrical fashion, after making the bequest of adjoining houses to his pregnant girlfriend, Cressida, and to his former comrade-in-arms, Louise Moon.

But was August's demise simple suicide or was it the result of a kinky sex game that went wrong? Had he cleverly planned to shame his distant father and take revenge on his ruthless uncle, the obese and grasping millionaire who now had his eye on Louise?

Or was it a game from the grave, pitting Cressida and Louisa in a fight to the death as reluctant and mismatched neighbours?

Excerpt: http://www.bewrite.net/bookshop/excerpts/pincushion.htm
About the Author: http://www.bewrite.net/authors/anne_morgellyn.htm

All BeWrite Books are available from: BeWrite Books, Amazon, Barnes & Noble, Angus & Robertson and other online booksellers and to order from high street bookshops.

Print ISBN: 978-1-905202-82-9
eBook ISBN: 978-1-905202-83-6
Price: £6.99
Pages: 188

ALL ROYALTIES FROM SALES OF THIS BOOK WILL BE DONATED TO BREAST CANCER CARE.

We were healthy

2008-07-15T05:24:00.000-07:00

Watched a very moving film about Theriesenstadt yesterday in which a ninety-eight year old Jewish pianist recounted the story of her survival as part of the prisoners' orchestra: We were given black water in the morning, she said, and white water at mid-day, and black water again in the evening, and yet we were healthy. Why? Because we looked forward to playing in the evening.

In the same film, a horrible nexus was drawn between the anti-semitic writings of Wagner and the use of music by the Nazis as a warped cultural tool with which to bludgeon the inmates of the concentration camps. (Primo Levi writes of how he will never get the music of the Lager - those infernal German marching songs, out of his mind.) Wagner believed that Jews had 'corrupted' the music of the Romantic period by their use of minor chords, and that their only hope within German society was to 'go under' (assimilation or annihilation?); yet it was Felix Mendelssohn who resurrected Bach's Matthew Passion! Perhaps this Nazi infiltration of the highest of the arts is an example of how a good impulse can so easily turn to bad - like a cell turning cancerous and setting forth on its interminable death march. For me, though, after watching the film, it was a message from the gods of the power music has to heal, minor chords or not. Beethoven felt it at Heilgenstadt, where it turned his mind from thoughts of suicide to thoughts of transcendence. And how Beethoven transcended! Wow! I was playing the Fifth Symphony - for the first time in years, as part of my current music studies. What a testament to healing that is, and what a powerful force for good.

CO-FUNDING FOR CANCER TREATMENTS

2008-07-08T13:00:00.000-07:00

The issue of co-funding, which I understand to mean patients paying for part of their treatment on the NHS, has been much in the news lately. If I sat down and thought long and hard about it, I guess I would have to stick by the original guiding principle of the NHS: that treatment should be freely available to all at point of need. The problem is that it isn't. But should those who can afford to pay for part of their care, such as drugs like Sutent, or the one that's keeping me alive - Herceptin, continue to receive all other procedures, such as scans and bloodtests, free on the NHS? To allow this inevitably suggests a two-tier and therefore unequal system, and to me, as a socialist with a very small sss, that has to be wrong.

On the other hand, imagine (as I can only too well) a scenario where a potentially life-saving drug, trialled and used successfully in other countries, is refused to an NHS patient on grounds of cost. And imagine if that patient could pay for the drug by cobbling together the money for that, but not for all the other procedures. And imagine still further another patient who could afford neither the drug nor the other treatments, but got the other treatments and not the drug that was being bought by the person in the next bed...No, no, no... It's a moral minefield.

Why can't these drugs simply be made cheaper? I understand that there are research costs to recoup on the part of the drugs companies. But why are cancer drugs in Britain VAT rated (like children's shoes for God's sake)? Why are they more expensive here than in other countries in Europe? Why not more freely, more widely available?

All this went through my mind when I was waiting for my recent hysteroscopy down in Penzance, imagining the worst-case scenario of another heavy duty cancer treatment programme, based on the usual nightmarish number of variables (disease location and process, stage, prognosis, treatment options, etc.). The hysteroscopy showed nothing at all (in fact, I quite enjoyed the cosy cottage hospital atmosphere of the day-case ward and my pre-op visit from a charming German anaesthetist, who said he would 'proceed' away from my vocal chords, I having told him my breathing was fine because I sang...). But lying on the CT scanner bed last week, for my 6 month check, I was overcome by the sort of free-floating anxiety that usually assails me at the main hospital, where once you stray outside the oncology areas, you are subject to the usual waiting about and vague air of incompetence. What if, what if, what if...

The cure for that, of course, is life itself. Live it. Seize the day. I drove up over Dartmoor with my daughter last week, relishing the scenery of South Devon, so unlike our scenery in Cornwall, and against which I have always had my Cornish father's prejudices (I'm not a Devon person, was what he used to say - and he always went on about the parlous state of Devon's roads (Conservative mean farmers). But last week, through my extra rose tinted cancer-survivor's specs, I saw Devon in a different light. Cricket on the lawn at Dartington; the clink of iced champagne glasses at the open air Shakespeare; the sun going down on the English meadows.

I can understand people wanting to sell all they have to buy more time for that kind of thing. For life.

Ancient Healing

2008-07-01T01:29:00.001-07:00

> Click the link below to view the icon of St Panteleimon,
> inspirational healer and martyr.
>
>
>
>

http://www.iconograms.org/B75W90CT
>
>
>
> __________________________________________________________

__________________________________________________________
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BLOCKED EARS

2008-06-15T12:43:00.000-07:00

My ears have been blocked twice this year, once at Christmas, when I managed to unblock them myself with a bottle of Ear-ex; the second time in March, when they were affecting my singing so badly, I decided to go and have them syringed professionally. The nurse who unblocked them was the same nurse who did the Well Woman clinic; and she reminded me that it had been 8 years since I had last been in for a Pap smear. So, duly chastened, I booked myself in for one of those a week later.

To cut a long story short, it came back 'borderline' which, in the normal course of events (i.e had I not had breast cancer), it would have merely been reported but not investigated, other than by a repeat smear 6 months later. Because I take Tamoxifen, however, my GP decided to refer me to the colposcopy clinic at the hospital, where a beady-eyed consultant gynaecologist, Mr Das (what a wonderful name for a gynae guy!) picked it up. A colposcopy exam, he said, would not give him a 'robust enough' result. So he has booked me in as a day surgical case for a hysteroscopy and ultrasound under general anaesthetic. Talk about one thing leading to another...

It turns out that several of my women friends (none of whom has - or has had - cancer) have had this procedure, some of them several times, either because it didn't work the first time or because findings were inconclusive. My friend Rosie wrote that both her 'procedures' were managed by an 'overwhelmingly arrogant man in a bow tie, who spoke to my left ear.' At least Mr Das looked me in the eye and said he wasn't worried, and it wasn't urgent. But if he wasn't bloody well worried, why book me in for this procedure in the first place?

My friend, Lindsey, to whom I scurried for some emergency reiki and psyching up last week, tells me it's because doctors these days are so afraid of lawsuits, they have to be ultra careful. My brilliant oncologist, who pulled down the smear result on his screen when I reported these unfortunate events to him, said he wasn't worried at all - even when I said Mr Das had seemed unequivocal in his dislike of Tamoxifen. 'You're doing well on it,' Duncan said. 'But if Mister-Doctor Das wants to take a look, just let him. ' (Pregnant pause.) 'That's not what you wanted to hear, is it?', he went on. Well no, not exactly. 'If he finds anything,' said Duncan, as positive as ever, 'All I'll do is take you off Tamoxifen for a couple of weeks and monitor your hormone levels. And if you need to come off it, I've got other things I can use.'

Why is Mr Das making such a fuss about Tamoxifen? Because, it seems, from what I can make out as fairly inconclusive (and non robust) studies, there is a minor risk of endometrial cancer from prolonged Tamoxifen use - like 10 years. (I have been taking it for three.) More disoncertingly, those women in the studies who did present with endometrial cancer had it already!

I've been debating with myself whether or not to have this procedure at all. I've just kicked the hospital visits into touch with my excellent Herceptin-at-home treatment, and now Mr Das has mounted a rear-guard action (terrible pun). Lindsey said any biposy - or curettage in this case 'creates a vacuum which has to be filled.' Well, that's one way of looking at it. I am probably due for a clearing out in that department. I was on repeated courses of antibiotics after my daughter was born, thanks to a tear and lots of stitching up by 2 surgeons, who stared into my nether regions and said they couldn't 'see the apex'. Why is it always men who go into this field of medicine? You'd expect to find more women in gynaecology and obstetrics these days; but not, it seems, here in Truro. Are there an equal number of women, I wonder, treating men with prostate problems? (Bet the answer is a big fat no.)

Anyway, if it needs looking at, I guess it should be looked at. On the other hand, if it ain't broke, why fix it? And, of course, I have shied away from going to get things checked before - and look where that got me (hairless and breastless.)

Best get on with it then.

Earning a living with cancer

2008-05-17T12:57:00.001-07:00

Breast Cancer Care's latest policy campaign, relating to employment and breast cancer, got me thinking about my own employment history with the disease.

Strictly speaking, I wasn't technically employed when I was diagnosed, but I was self-employed and thus reliant on a number of part-time and short term contracts to keep me going - a tall order, always, for a lone parent with zero maintenance and a dependent child to support. Thanks to clever investment planning - not my cleverness, it has to be said, because I am a disaster when it comes to money, I had the right sort of insurance policy (thank you, Chris Davies of Newquay Investment Services who directed me to lifecare with Axa Equity and Law) which paid out within three weeks of my consultant sending in all the gory confirmations. This meant that I could jettison most of my jobs and pay off my house and still remain life-insured at a comfortable premium of thirteen pounds a month. At that time (three years ago), I thought I might not last long and I wanted both to see the colour of the insurance money and spend what I thought may be my last few years taking it VERY easy and enjoying myself.

But I survived, and this year, I have had to address the question that I might, just might, still have ten or more employment years ahead of me. I've never concealed the fact I have breast cancer, and it's been good to see that previous contractors are still willing to recontract me. This could, of course, be because the contracts are short term or part time - or that I have managed somehow, over the years, to make myself a sought-after commodity in certain education circles! I have no idea what it is like for those seeking full time work in my position. But I suspect it can be tricky, which is why the Breast Cancer employment campaign is worth supporting. This issue doesn't just affect women (and men) with breast cancer - it affects anyone experiencing a chronic or life limiting/threatening condition. We need to stand up and be counted. WE AREN'T DEAD YET! We can still count!

Topic of Cancer: BREAST CANCER CARE EMPLOY CAMPAIGN

2008-05-17T12:55:00.000-07:00

www.breastcancercare.org.uk/emply

BREAST CANCER CARE EMPLOY CAMPAIGN

2008-05-17T12:52:00.001-07:00

Breast Cancer Care are launching a new campaign in May and June relating to best practice in the workplace for employees with breast cancer. The link is at

www.breastcancercare.org.uk/employ

Non-Cancer Types

2008-04-30T07:14:00.000-07:00

Reading Amber's message about the definition of cancer personalities as types who can't say no to favours they don't want to do, or to put-up-ons in general regarding their time, expertise, even their bodies, got me thinking about the opposite personality type to this: the ones who don't give an inch.

You find them in all walks of life, even in professions which are meant to be vocational (i.e. 'caring'). I've met a couple this last year or so in local musical circles, and I shudder to think of all the little children taking music exams or auditioning before these asocial men (they happen to be men...) with zero people skills: an insensitivity that isn't so much chilling as cryogenic! I've seen grown women in choirs, women who have borne children, held down responsible jobs, passed serious examinations, quake in their shoes before the MD of a provincial choral society. I used to think it was funny, until it happened to me. Then I slapped myself and reminded myself of what I have achieved, the rich life I have experienced beyond the limits of the cathedral cloister or rehearsal room. I thought about the personality type, and how these anally-retentive and charmless martinets are more to be pitied than feared - even though they probably don't get cancer!

Having cancer readies you, and steadies you, to face pretty much anyone and anything. This is not necessarily a good thing, of course; and definitely not a state to be envied or sought after. But it is in many ways a privilege being able to laugh at what isn't important, or only important within a little kingdom in limited locality. The wide world is bigger than that, and to survive, you have to learn to put yourself out there, in the top percentile. No one can give you permission to write or sing or make music, or make a fool of yourself. More often than not, it's the mediocrities in this world (the Salieris, not the Mozarts) who set themselves up as permission-givers (and often, too, by cowardly proxy); but once you learn to see them without their clothes (or on the loo), their power slips away. Although they probably don't get cancer...

My oncologist (a Mozart, not a Salieri - although I hope he doesn't die so young) rang me yesterday to put my mind at rest about the recent smear. An atrophic cell, which could indeed be down to the Tamoxifen, but no need to call for the heavy artillery yet. Duncan is in the right job for the front-line branch of medicine that is cancer. I'm so glad he isn't playing the organ in some cathedral or directing a loss-making choir. A physician, like a musician, should be an artist (even if that implies a certain open-hearted vulnerability). It's more than an ability or capability. It's a gift.

A Cancer Personality?

2008-04-27T06:24:00.000-07:00

Amber Smithwhite sent me a copy of an article in this month's Mensa magazine, entitled: 'Is Life Really So Wonderful?" (Ghislaine Vaughan in Mensa, May 08)

Yes, it is - and it is to be hung onto and treasured for as long as it is given to us. But the comment on what may or not constitute 'a cancer personality' struck me with the force of truth.

Ghislaine Vaughan writes: "I once read a book about cancer in which the author, Bernie Siegel, a surgeon with many years' experience of talking to, operating on and generally supporting people with the disease, had come to the conclusion that people who get cancer have a certain type of personality. He even went so far as to suggest that you could tell whether someone was a likely candidate for cancer by asking them the following question, which he had found to be the bottom line: "If a friend asked you a favour and you didn't want to do it, would you do it anyway?" Apparently, if you say 'yes' to this question, you are far more likely to develop cancer than if you say 'no'.
It became clear from this idea that those with a cancer personality are in general far more likely to give up their own wishes in favour of those of somebody else. Bernie Siegel gives many examples of how his patients recovered or had long periods of remission when they were encouraged to pursue their dreams and aspirations, including one young man whose prognosis was bleak until he began playing the violin. He had always wanted to study music but had been pushed into a career as a lawyer by his family. As soon as he gave up law in favour of the violin, he got better."

All of which strengthens my resolve to keep up my studies in singing and piano and take my music diploma next year. I got ninety three percent in my last theory assignment, which was a boost to the morale in a week when I had an abnormal (well, 'borderline') smear result. I now have to have something called a colcoscopy - ironical, really, since the reason for putting off the smear test for so long, while I was undergoing treatment for breast cancer, was that I thought I really couldn't cope with any more humiliating poking and prodding. Well, now I think I can. And I will. Because it is worth it - it is. It's a wonderful life.

The P Word

2008-03-28T10:19:00.000-07:00

Today I received some paperwork from the Healthcare at Home people, confirming that my Herceptin at home treatment is classified as 'palliative'. Three years ago, the p word would have set the world spinning for me, but now, I think, it frightens me less than a total discharge would have done - or do. Because I know now that one can never be totally discharged from this disease (it has such a nasty habit of biting back when least expected), palliative treatment, or care, which doesn't (necessarily) mean the end of the line but merely another means of living with the disease, seems a healthy way forward.

An acquaintance of mine also sent me a dog-eared newspaper clip, dating from 1983, about treatment choices, specifically whether or not to go ahead with a mastectomy in the case of the woman featured. She opted not to have the op, and my correspondent was wondering if she had survived. Twenty five years is a very long time in the story of cancer treatments, and many of the life saving (or life prolonging) drugs available readily now were simply unheard of then - like Herceptin, for instance. Before the discovery of this monoclonal antibody, there was no point in testing biopsy tissue to see whether women were Her2 positive or not - because, if they were, there was no treatment. Now there is, and I don't care whether is it palliative or not, as long as it works.

I remember sitting in the marble bathroom of the 5 star hotel in northern Spain where I was staying just before my operation and wondering whether I should go ahead with it after all. The chemotherapy (FEC) I had had over the previous eighteen weeks had taken out one lesion altogether and shrunk the other down to a size which made it feasible to operate. My poor right breast felt normal again. The puckering had gone, and so had the lump I could feel. As for the other rogue cells at large in my system, I knew removing my breast was not to going to have the least effect on them - their control was down to the chemo and the Herceptin alone. But still I went ahead, two days after sailing back from Spain. I went ahead because my doctors, Duncan and Alistair, had now decided it was 'worth it'. Surgery, though, was without doubt the worst part of the whole business for me, apart from the emotional shocks (disappointment in family members) which were nothing to do with the disease itself (although they may have had a lot to do with its progression). The surgery was bad because it was painful (at least in the aftermath) and ate into my daily routine (I couldn't drive my car for a couple of weeks) and - worst of all, it necessitated a week's stay in hospital, which meant, in theory, a total lack of privacy for me - a state of exposure I thought absolutely couldn't stand. In the event, though, I was only sharing with two other women in the bay after we had conspired to remove the old woman with dementia who kept us up all night with her complaining, and - worse - had a terrible, whingeing daughter who was visiting on the ward from 8 thirty in the morning till 8 pm at night and for some reason lit on me as the patient to badger. This ghoul (for that's what she was) haunted me throughout the day I was waiting to go down for surgery with her tales of people who had died (from breast cancer) and those who ended up with lymphodema. At last, I shook her off and hid in the chapel; but when the time came for me to change into the theatre gown, she stood over my bed and made a running commentary on the progress of my undressing to her demented mother (and father). Boy was I glad to see the back of her. I guess she's badgering someone else now. That's the trouble with whingeing hypochondriacs: they always live to tell another tale.

Still, maybe she chased me into the chapel for a reason. The Gospel was open on the story of the storm at sea in which Jesus (who is sleeping soundly as the sea is raging) admonishes his disciples with the question: 'Where is your faith?' I knew I would be all right after that. I just knew.

Herceptin at Home

2008-03-21T07:59:00.000-07:00

Yesterday, my treatment came to me. I have always been wary of having it at home, thinking this must be the thin end of the wedge, the slippery slide to the hereafter that no one with cancer wants to get onto; but it didn't feel like that at all. In fact, my only regret now is not taking up Duncan's (my consultant's) offer to 'have it at home' in the first place.

The nurse, Sarah, was uniformly charming. The equipment came in a discreet black suitcase on wheels - thanks to the weight of the oxygen cylinder inside and the foldaway chrome drip stand. We set up straight away, me soaking my hands in my kitchen sink while Sarah moved the chair around. She found a vein within seconds and was in it even faster. I have never before had a 'flashback' (haemorrage) into the valve as fast and furious as that. Then we sat and chatted while the drug dripped in under its own pressure. The electronic pumps they use at the hospital are apparently only for monitoring. 'So they can go off and see to other people,' Sarah said. 'But you have me - my undivided attention, for the next two hours.'

It passed really quickly. I was warm, holding my hot water bottle, and completely stress-free in my own armchair with my feet up on the plastic cube. Sarah went out to look at my garden and said she was booking some time out there in the summer months, which made me visualise having my treatment under the trees, with the parasol protecting me from dripping sap.

Sara works for a private company that provides outreach nursing services to both the NHS and private sector - and I felt like a private patient in her care. The Herceptin bag came by overnight courier from Burton on Trent, and I was presented with my own smart blue file, containing the usual protocols, an emergency on-call contacts list, and a copy of Duncan's prescription. Sarah had a hand held gadget that printed out the treatment notes onto a label she stuck into the file. Cannulation attempts: 1, etc, etc. Tolerating it well.

If this is all I have to tolerate from now on, I can live with that.

I am living with that!

City of Light

2008-02-25T16:38:00.000-08:00

On the haem clinic wall is a picture of Paris. It's the Champs Elysees, I think, because the Arc de Triomphe is visible in the background, although it could be a view from that boulevard in the 16th arrondissement, the other side of the Etoile, where my Serb friend, Lydia, used to live. I don't know where she lives now because she stopped speaking to me when I refused to see the Yugoslav civil war in Serb-delineated black and white. I know she married a fellow Serb in Paris, a composer, no less, who came to visit us in Cornwall twice and even composed a piano piece for me. They have since divorced.

Back to the picture: the foreground has buildings on the boulevard done in garish colours, with a cafe-terrasse down below. The right hand of the composition is carefully drawn in, but the left is an impressionistic mess - it could be a rainy pavement, it could be the cafe lights twinkling in the twilight. It could just be that the artist got tired, as patients get tired in the haem clinic, of sitting there and wondering what to do next. But it did its job in distracting me from the blood bags and the needles. It took me back, albeit in a sort of cynical, superior way, to Paris, where I spent so much of my life, first as a student at the Sorbonne and then in a variety of useless jobs. Actually, I spent a lot of time in Paris even before that. I've been doing nothing in Paris since I was about fifteen. I often think about going to live back there, but then I visit again and the same old ennui washes over me: Been There. Done That.

Still...Paris. In the Spring. Paris. Nuits de juin, dix-sept ans, On se laisse griser... (That was Rimbaud, not me, the enfant-terrible of a poet my tutor at University said he would have hated to have in HIS class...) Henry Miller is another notorious liver-in-Paris. (Alistair would not have wanted HM in his class either...) I remember so much about the place - those parties held by American, Jim Haynes, in his atelier in Montparnasse, trying to perpetuate the Paris of long ago, of writers and artists and no-hopers but determined livers nonetheless.

I wonder what it means to the others who see that picture every day? It's more evocative than the other pictures they've got up there, most, I suspect, donated by grateful patients. There are static views of Cornwall ( it's possible to make even the sea here static if you've got no eye) and the odd abstract. But Paris did it for me, even though the Champs Elysees has to be my least favourite part of the city of light. It caught the aspect of the entire city, something of its spirit. And in a haematology clinic in Truro on a Monday in February, that's saying something. That is succeeding in something.

Healing Waters

2008-02-18T06:46:00.000-08:00

Just back from the hot springs of Budapest where there is always something new to discover. I first went there six years ago, which was three years BC (before cancer) and stayed at The Gellert Hotel, which put me straight in mind of the sort of old Soviet hotel I used to stay at when working in Russia before the capitalist revolution in the early Nineties. Because The Gellert was really showing its age last time we went there in 2005 (although the bathroom is forever etched in my memory as the place where I spotted the second lump in my right breast), we stayed this time at the Helia, an anodyne modern edifice opposite Margitsziget (Margaret Island). But I recognised the concierge there from The Gellert, so Cara and I were given an upgrade to a room set aside on a restful corner of the first floor, with views over the Danube and the edge of the spa complex. This beat the tram noise at the poor old Gellert though the thermal water in the baths was just as hot (up to 38 C) but clearer, less gaseous than the greenish soup with elderly ladies floating in it you get at the public baths. I wrote about the famous Gellert baths in the archive pieces (Crab and Fishes) so won't repeat myself now.

I didn't take any medical insurance, other than my standard cover that comes free for Cara and me through my banking package (if anything from a bank can ever be said to be free), and our E111 forms, of course. When we arrived, though, the driver who picked us up from the airport (recommended - see www.budapesthotels.com Airport Pickup Service) said there had been a demonstration that day about proposals to make Hungary's health service a paid for service. If this happens, I expect it will put an end to free reciprocal agreements with the NHS in Britain. But I didn't take out extra cover when I went to Switzerland either, in 2006, or Germany in 2007 - although I didn't anticipate any problems in either of those places. The most likely problems, relating to my cancer treatment anyway, would have arisen when I sailed to Spain in 2005, five weeks into chemotherapy treatment (and without my hair), or later that year, in Budapest, exactly a month after my operation. Travel insurance for people with 'ongoing' or 'prexisting' conditions like cancer is punitive - although I recently read somewhere that these punitive measures contravene disability rights legislation under EU law.

Anyway, Budapest. It's wonderful. Try it. Sod the insurance - just go.

Herceptin

2008-01-29T13:08:00.000-08:00

Herceptin has been my bag for close on three years now. When opium was first synthesised, I believe they called the new drug heroin because, to the patients that used it to numb pain, it had a heroic quality; and in its purest form, uncut by flour or cement dust or milk formula or whatever else the crooks who deal it use, I expect it still has. Herceptin, anyway, is my heroine, at least for now.

I have my treatment, by intravenous infusion, every three weeks at the haematology clinic in the Royal Cornwall Hospital. The nursing team there are heroines of a different sort, battling with infinite patience against the unseen powers who make so many stupid, arbitrary and ever more impractical administrative decisions at this and so many other NHS hospitals in which the management culture is now a terrible blight. It's a culture predicated on a wish to curse, not cure. The latest decision thought up by this dictatorial crew of outrageously overpaid bureaucrats (whether or not they've got MBAs - and in a cancer clinic, who gives a shit about MBAs?) is to overbook the clinics and take on ever increasing numbers of chemotherapy and blood transfusion patients, without increasing the number of nursing staff or seats in the treatment rooms. By what rationale of time and motion or other redundant studies they see this working, God only knows; but for the cancer patients waiting for chairs, it means a longer wait; and for the oncology nurses, who start at 8am and work till six (or when the last late patient has finished...), it means no lunch or tea breaks. To perform their jobs as well as they do, in such circumstances, with such unfailing patience and friendliness and professionalism, it goes without saying that this team of nurses - Jo, Alice, Rachel, Yvonne, Cass and all their colleagues are something beyond exceptional.

Yesterday (thanks to Management), I waited forty minutes for my chair in the treatment room (and I was lucky - I got a recliner) and was cannulated at twenty to two by poor Alice, who hadn't had a break since clocking on. This time last year, I was having problems with my veins, it taking sometimes as many as 11 cannulation attempts (which means 11 pricks in the arm and hand) to get a line in; but, strangely enough, it's got better since last summer and now I don't worry about it nearly as much as I used to. It's not that the cannulation is particularly painful: a 'sharp scratch' is indeed all it is; it's the anticipation (will they spear a vein this time? will it be over soon?) that causes the most stress. I must now have had close to two hundred 'sharp scratches' - including all the spikes for blood tests, etc, and all in my long-suffering left arm and hand, the right one (my 'operated side') being out of bounds because of risk of lymphodema. I haven't got lymphodema though, and sometimes, it has to be said, they go into the veins on the right. They use the smallest gauge of needle (a paediatric cannula), which is fine for chemo drugs, including Herceptin, but not for CT scans, which require the contrast injection to be given at a faster infusion. But I have found a way around this, like today, by getting the radiographers to put the contrast in through my treatment (paediatric) cannula at a lower pressure. This meant I got away with only two sharp scratches this week - Alice's one failed attempt in my hand and her other successful 'scratch' infusing both Herceptin yesterday and revolting, metal-tasting contrast dye this morning, when they scanned my chest and abdomen.

That's treatment over now for the next four weeks because I am taking a holiday in Budapest on 10 Feb. It's allowed to take the occasional holiday from Herceptin treatment, but what this means in terms of future appointments is that my schedule will be out of synch - and this means more 'sharp scratches'. Usually, I manage to synch a three weekly Herceptin infusion with a three monthly clinic appointment, which means I can get away with one cannulation for both infusion and the dreaded blood test, it being more difficult to get blood out of me than Herceptin into me. But Budapest is more than worth that extra sharp scratch; and four weeks - a whole four weeks - away from the hospital, after all this time, feels like a liberation!

The Illusion of Pain

2008-01-25T15:21:00.000-08:00

If the first and lowest operation of pain shatters the illusion that all is well, the second shatters the illusion that what we have, whether good or bad in itself, is our own and enough for us.

C.S Lewis, The Problem of Pain

For the three years I've been living with this condition I have experienced mostly human kindness and compassion, and this has been at its very best. At its very worst, I've had people avoiding me - and I can live without those people. But last Saturday, when I explained to the woman who recently moved to the house at the bottom of my garden and was berating me about the sight of my builders' heap - only exposed by her illegal felling of some ancient trees - that I was (a) not aware that the builder had left an old loo seat there, in view of her window; and (b) that I was not up to clearing the large items slipping out from under the pile of leaves because I was living with secondary cancer and tired easily, her response was:

I DON'T WANT TO KNOW THAT....

There then followed several abusive fishwife style charges, too silly and petty to mention here, although they left me reeling in amazement. My tendency (a bad one, since it always puts me on the wrong foot) is to feel sorry for such people because they are well, let's say, uneducated LOCAL people (Cornish peasants...) who probably haven't had a quarter of my advantages, etc, etc. But that's politically incorrect of me. Probably illegal even to THINK such things these days...(I hold my hand up, guvnor...) Probably some mental illness there - even if its only a pathological lack of compassion; but isn't that a definition of a psychopath? Oh God - and at the bottom of the garden, too!

Thing is, though, if you live with cancer, you can pretty much live with anything.

Chronicle

2008-01-04T09:51:00.000-08:00

I have just posted three extracts from a treatment chronicle I began about a year ago in order to try and make sense of (or impose some kind of order on through the medium of words) my diagnosis and life-changing new status as Person Living With Secondary Breast Cancer. I have survived this treatment, and this disease, for more than three years since my 'official' diagnosis in March 05, because I let the lump fester a good three months before finally plucking up the courage to visit my GP after a 'fortifying' sojurn in a Budapest spa (see Crab and Fishes 1....). All I can say on this point is, Go, go, go to the doctor - whatever your fears, whatever your circumstances, because it was really my circumstances, rather than fear, that prevented me taking that first step onto what I already recognised as my road to Compiegne. Except, unlike poor queen Marie-Antoinette, I kept my head and lived to tell the tale. In fact, once war has been declared on it, cancer is a strangely fearless condition, really. The fear, in my case, was all for my daughter. She was just ten then, and I could not bear the spectre of social services coming in to take her away from me if I needed to go into hospital. But I needn't have feared that. It was all sorted out in the end.

So, in case anyone is interested, or might like to take some heart from my experience, the retrospective postings of this journey on this blog are:

Crab and Fishes 1
The Regimen
Hair and Other Losses

Hair and other losses

2008-01-04T09:49:00.000-08:00

My hair came out after the second dose of FEC. I don’t know which of the three drugs was responsible for my baldness, or whether all three were equally responsible. I favour cyclophosphomide because it sounds like a poison, a weed-killer, perhaps; whereas of the other two, fluoricil could be a tooth-whitener, and epirubicin a jewel-red fruit squash that turns pee pink for a day. But they are all universally toxic to cells (like the sun which shines on good and evil alike); and epirubicin especially, when combined with trastuzamab (Herceptin) is toxic to the heart.
‘If you do arrest,’ Thea told me cheerfully, ‘we can always resussitate you.’
And if I arrested, what would happen to my daughter then? She was staying with my mother in the north while I embarked upon the nasty chemo regimen. I was unsure of how it would affect me, and consequently, my ability to care for my child while I recovered from each dose of poisoning. So I let her go, when my mother put it to me as the only option, without thinking too much about what it would mean to lose my little girl, because thinking about it too much would have made it quite impossible for me to wave her off at the station and go home to an empty house, bereft for the first time in ten years of my only child’s presence, her sweetness and her light. When I waved her off, I still had hair, auburn hair, down to my shoulders, although it badly wanted cutting. I had battled with Cara about it throughout our holiday in Budapest. She wanted me to let it grow.
The breast nurse, Janet, had told me about the cold cap, a ridiculous-looking blue helmet that is meant to minimise the risk of hair-loss through chemotherapy. It maximises the treatment time, however, because it needs to be worn for a bit before the drugs are infused, during the infusion, and, I think, for a short time afterwards. My objective was to spend as little time at the hospital as was possible in order to spend as much time as was left to me with my daughter. My hair was a small price to pay for this precious commodity of time, newly precious to me because I had wasted so much of it. Cara, I hoped, would understand.
‘And anyway, it grows back in six months,’ Thea said, ever cheerful, ever sure. ‘The wig lady’s here today. You can get a wig on the NHS. Why don’t I introduce you?’
On the advice of the wig lady, who clearly knew about these things, I went for a pre-chemo crop at an expensive salon with a chair that massaged my back while my hair was being washed and my head massaged. This was the only visit I have ever made to a hairdressers’ when I didn’t feel intimidated by the experience, made all the more enjoyable because the stylist was the first person I had chatted with in over two weeks who did not know I had cancer. A haircut usually lasts me about six weeks, although I figured that, this time, instead of the hair growing out of its style, it would probably fall out altogether, something I neglected to tell the stylist as I tipped her. My next cut was waiting in a box at home: a Raquel Welch ‘pixie’ wig, with a steel brush to groom it and its own special shampoo and conditioning bottles. I hoped it would make Cara laugh, because seeing her cry again, as she cried when she learnt of my diagnosis, throwing herself down on the hardwood living room floor and howling with an existential despair, while my mother went to phone a friend in the other room, and I stood there helplessly, was more than I could bear. That my daughter should come to know despair at the age of ten, because of me, caused me far more pain and grief than the disease itself. How I would get through this, I didn’t know. But I knew that I would get through it. I have breast cancer, I said to myself, as I opened my eyes the morning after diagnosis, knowing that it was going to be like this every morning now, for the rest of my life, ever walking beside me. I have breast cancer, but I will get through it. It was like a mantra.

The Regimen

2008-01-04T09:48:00.000-08:00

July seventh, 2005. The haematology outpatient clinic at Royal Cornwall Hospital, Treliske. There are about sixteen patients, all hooked up to electric pumps. Half are getting blood transfusions; the rest, myself included, are having chemotherapy. But because of the news broadcast that is panicking us all -- clinicians, patients, nurses and auxiliaries, some of whom have relatives in London, some, like me, who have spent half their lives in the city and could walk that fateful bus route through Tavistock Square with their eyes closed, we seem to have blurred the boundary that usually marks off sufferers from non-sufferers (or those who may long-suffer us). We are all equal today, uniformly terrorised by the pressing understanding of our own mortality which has jumped out of the TV set in the treatment room and shaken us all to the teeth.. As the decimated bus in Tavistock Square is framed up close, we are all, this minute, entering an even playing field of fear and horror. This doesn’t make it any easier, of course; but it does seem to make our situations less exclusive, at least for today.
When I received my diagnosis, two weeks after Cara and I returned from the annual trip to the spa, and a mere twelve days after the GP had referred me to The Mermaid Centre (‘a one-stop shop,’ she said, ‘so at least if there’s anything nasty under there you’ll know the same day’), I thought I was falling off the edge of the world. The world hadn’t ended -- far from it; it was rather that I was being thrown out of it, and not with a bang but a whimper. At the same time, I had the slightly more uplifting thought that all this was an illusion, like the series of tests I had had that morning at The Mermaid Centre: mammogram, ultrasound, needle aspiration, cone biopsy. A series of illusions, one after the other. Throughout these tests, I was thinking of the work I had brought with me: a series of creative writing assignments done by external students at Exeter University, mostly of indifferent quality, and almost as tedious to endure as all these clinical procedures. But, increasingly, I grew all too aware of my surroundings (grounding, I think, is the pop psychologists’ term). I became aware of the radiographer’s blank expression and increasing taciturnity, contrasted with the warm touch of the clinic nurse who came in to assist the kindly, German radiologist who performed the ultrasound. ‘You are right,’ she told me, ‘moving the sensor to the top of my right breast, beneath the collar bone. ‘It’s nothing to do with these superficial skin infections.’
Then the surgeon arrived. ‘I’m Alistair,’ he said. ‘And this is going to hurt you, sweetheart. When I was a junior doctor, I never hurt anybody – but I didn’t get enough material and then the consultant had to go and hurt them. Now that’s me.’
He punched a fine needle into the area below my collar bone identified by Kirsten, the radiologist, and drew out his material. It didn’t hurt a bit, and I told him so. I liked his utter frankness and his Sean Connery-esque Scottish burr.
‘I’ll be back in half an hour,’ he said, grinning at me in a non-committal fashion. The Mermaid Centre has a cytologist on site – which is helpful to those lonely women in the consulting rooms, cowering in fear and anticipation. Needless to say, it was a long thirty minutes, in which I was hyper-aware of the white walls, the half drawn blind, the light breeze blowing in the through the window, the basin on the wall, the MRSA-fighting hand-wash, the needle mark on my chest, which was starting to throb a little, though still it did not hurt.
Alistair came back into the room with a woman dressed informally in a soft grey sweatshirt and trousers. It’s bad, I thought, because they’re bringing in the counsellor.
Alistair sat down next to me on the consulting couch and put his arm around my shoulders. ‘You don’t need me to tell you what it is, do you?’ he said. ‘You know what it is?’
I nodded. ‘The thing is,’ I said, ‘I’ve got a daughter. She’s ten. I’m a lone parent.’
‘And have you any relatives near by?’
‘She has,’ I said. ‘She has her father’s relatives in Hayle. Her father isn’t with us. He isn’t well.’
‘Are they decent people?’ Alistair said. ‘Can you trust them?’
I didn’t know what to reply. I had never had to trust them before – I had never had to trust anybody with Cara’s care. There had been only me and her: a symbiosis.
‘Well this is our problem now,’ Alistair said. ‘My problem, as well as yours, for the next five years. I’ve been to see my colleague, Duncan, just down the corridor there.’ He pointed through the window to what appeared to me as a blank wall. ‘The way we’re going to treat it is to give you some chemotherapy, over eighteen weeks. Duncan will tell you about all that. Then we’ll give you a month off in August before doing a mastectomy. I’d want my wife to have it,’ he added defensively, as though anticipating some protest on my part.
‘And who will do that operation?’ I asked. ‘Will you do it?’
‘Who the fuck else would do it?’ he said. I laughed.
‘You’re a four-letter man,’ I said. ‘I like that.’
He nodded. ‘Then we’ll give you some radiotherapy. You know, when I first came to this hospital, I had to send my fucking patients up to Plymouth for their radiotherapy. Couldn’t be doing with that. This is Janet, the breast care nurse,’ he said, indicating the lady in grey and getting up. ‘She can fill you in. Duncan, will see you tomorrow, nine o’clock, at The Sunrise Centre.’
‘Where…?’
‘Clinical Oncology, just down the corridor there. That’s where you’ll have the radiotherapy.’
I stared through the window at that blank wall. Alistair went out and Janet hovered. There was a box of tissues on the chair at the foot of the bed. I think she was waiting for me to cry.

Duncan drew me a diagram on a piece of paper and referred to the dots and dashes on it as ‘zapping the buggers’.
‘I’ve got plenty of weapons in my armoury,’ he said. ‘There’s a drug called Taxotere, one of the nastiest poisons we’ve got. We might start with that, although it might make you feel really rotten for a bit. The idea is to shrink the tumour down so we can operate.’
‘Alistair, you mean?’ I said. ‘Why can’t he do it now?’
‘The tumour’s too close to the chest wall,’ he said gently. ‘I’m proposing six doses of chemotherapy to see where that takes us. But before we start, I want to send you for a couple of tests – a chest X-ray. A CT scan and a bone scan, just so I can see what I am dealing with from the very outset. I wouldn’t want to get six months down the line and find we’ve missed something.’
‘OK. And when will this chemotherapy start?’
‘Next week probably.’ He smiled. ‘Oh, and if you agree, we’d like to send some of your biopsy tissue away for testing. It’s for a clinical trial we’re running, to see if you might be suitable for it.’
‘That’s fine,’ I said. ‘It’s no good to me.’
So I signed the consent papers, went for the scans, and looked forward to having a few days’ off from all this, over the week end, before Duncan zapped me with his monstrous regimen.
But he wanted me back before then. He had left a message with the bone scanner to call me over to The Sunrise Centre again. I knew why – not where, exactly, but why.
This time, Duncan had both his research nurse, Thea, with him and another breast care nurse, called Josephine. It’s bad, I thought. Very bad.
‘The bone scan was clear,’ Duncan opened. ‘But unfortunately, the CT scan showed some spots on your lungs.’
‘Metastases,’ I said, smugly citing the clinical word, because words are my job. My whole life, I thought, I’ve been obsessed with what Alistair might qualify as fucking words. And what are words, anyway? Just fancy parcels of received meaning.
‘You mean it’s spread? You told me before that with these drugs – this Taxotere, for instance, and all the rest, the surgery and the radiotherapy, that you could eradicate it, more or less, and I’d have the same chances as any other woman my age, I mean for living to old age…’
‘We can’t cure it,’ Thea said. ‘But we can treat it.’
‘Alistair can’t operate on my lungs?’
‘No,’ said Josephine. ‘It wouldn’t be possible.’
I looked Duncan in the eye. ‘I’m not bothered for myself,’ I said. ‘I mean, I’ve had an interesting life.’ A rich and exciting life by anybody’s standards. Running round the world like a headless chicken, interviewing people for American TV, so that people in the red-necked mid-West could switch on and gawp at those backward Europeans. I had a much more important life now, here in Cornwall, a life that was all my daughter’s.
‘Will I live to see my daughter grow up?’ I asked Duncan, rather fiercely.
‘Yes,’ he said, emphatically. ‘Yes. We’re talking years, not months.’
‘Years?’
‘Years.’

Years with cancer. I tried not to think how many. I had had forty six years without it; the number I had to look forward to with it was an unknown quantity. But then so is any calculation pertaining to the future, an unknown quantity rubbed in hard on 7 July 2005, in front of the TV set in the haematology clinic. Hooked up to drips, we patients are as desperate to hang on to life as the healthy people caring for us, terrorised by the news broadcast. I am hanging onto life by a line containing the product of outstanding medical research: the monoclonal antibody, trastuzamab (Herceptin). It costs twelve hundred pounds a dose, and Duncan, to whom I am eternally indebted, has put it into my treatment regimen, a mixture of three cytotoxic chemotherapy drugs, a hefty dose of steroids, which send me up high as a kite, and something the nurses in here call ’your cover’ – which has so far stopped me from being sick. I am hanging onto life here in the clinic in Cornwall, while up in London, a group of deeply disaffected, morally moribund, and mortally stupid young Islamo-fascists are blowing themselves to pieces and destroying, willy-nilly, innocent bystanders who happened to get in the way. A bit like cancer cells, really, spreading out in an undercover crab-like motion, seeking parasitically to block out and destroy all that is life-enhancing and life-affirming – all that is life. An anti-culture, a terrible blight.
But I have survived it – up to this point in time, which is the only point any of us really have. I am equal to it.

I am still here.

Crab and Fishes 1

2008-01-04T09:44:00.000-08:00

March fourth, 2005, my forty-sixth birthday. I am fighting with my ten-year old daughter for the right to go topless in a Budapest spa.
This place is absolutely not about the body beautiful. Breasts come in all shapes and sizes here, except the uniform. There is not the slightest whiff of the footballer’s wife or silicone babe in the ladies’ pools and massage booths of the once grand and glamorous Gellert Hotel. Today, in fact, is pensioners’ day, and the local grannies bob about like pickled walnuts in the cloudy, sulphurous water, naked except for the well-bleached linen modesty aprons that flap uselessly about above their grizzled pubes. No one is paying the smallest bit of attention to my own well-lived in body, I assure my furiously embarrassed little girl; but I wonder, all the same, as I slip down my straps and climb into the icy plunge if it is noticeable, this strange, slight puckering on my right breast above a strange hard lump I felt there about six weeks before Christmas. There is only room for two in the plunge, and the other incumbent, a naked Austrian woman, looks challengingly at me, to see if I can stick it out. I last about ten seconds.
Cara is waiting for me back in the thermal, not realising that it is her whom the Hungarian grannies are talking about, for skulking too long in the 38 Celsius bath. I swim up to her (another contravention of the rules) and, still defiantly topless, submerge what my new Austrian friend would call my heart and lungs chakra in the dense hot water, hoping that its curative properties will disperse this strange contusion that is keeping me awake. It is possible to reach a state of beatific torpor in these baths, judging from the expressions of some of the women: a transcendent state, where past and present converge in great white hopes for the future. Most of them have been in here for at least an hour, which is fifty minutes longer than the maximum time recommended at this temperature. Cara is rosy as a picture-book apple, and I hate to imagine what the hot spring water is doing for my own face, though it is doing wonders for the circulation in my legs. Watching the clock, fixed high on the wall of green and silverfish grey majolica tiles, I wait out another five minutes before a white-coated masseuse, a relic from Communist times from the look and sound of her, comes to the steps to shout out a number at me. She wants some other hapless tourist, I expect, who doesn’t understand Hungarian; and I briefly consider taking her place, but am frightened of the close scrutiny I might attract perched up on the couch, beneath the harsh bright lights and expert, pummelling hands. There is a hospital on the floor above the spa, purporting to treat cardio-vascular problems. We pass it, Cara and I, as we ride up in the antique lift of the grand old hotel, in which we are thankfully staying, because to go to the effort of drying and dressing and turning out onto the cold March streets after the enervating sensation of the baths must be punishing indeed. A couple of ‘patients’ in hotel dressing gowns get on at the hospital floor; but Cara and I do not get out. Cardio-vascular problems, I guess, are not my trouble.
It is still there, back up in our room, as I peel off my swimsuit again beneath the same sulphurous waters of the bathroom shower. In fact, there is possibly more of it, for besides the hard, tight lump and the puckering, there is now what looks like a slight patch of inflammation beneath my collar bone. The mirror is steaming up, and my image is starting to melt, like one of the damned in hell in Michaelangelo’s Sistine frescoes; but I can see it in my mind’s eye.
It is still there.
It is always there.
It isn’t going away.

notes on survivorship

2007-12-06T05:21:00.000-08:00

Survival is what everyone practises, all of us, every single day of our lives. We hang on in there, breathing the air. We drink the water and chew the cud. We share these basics. Then come the particulars, of which cancer is only one. It is only another exercise in survivorship. That's all it is.

This blog, when I get the chance to post to it, will encourage others to share stories about survivorship, maybe not exclusively survivorship to do with cancer. Just because I live with cancer doesn't mean it has taken over my life and crowded out all the other survivorship issues I - like everyone else - must deal with on a daily basis. It did shout loudest when it first came up; that was only to be expected. Cancer screams urgency, demands complete and focused attention. But not all the time, not every day. Like anything else, like life itself, you get used to it; and it's surprising how many other demands - the call of a sunny morning, a parents' evening at school, a load of scripts to read, a song to prepare, can drown that shrill sharp voice. At first, you think you have no time at all, but that's not necessarily the case. And, besides, we all of us, all of us, face life one day, one hour, one minute at a time. When my oncologist told me I had years, not months, I felt suddenly equal to the challenge. The voice lost some its shrillness. It was just another journey.

Whatever becomes of this blog, I want to dedicate it now to the oncology/surgical teams at The Royal Cornwall Hospital, Treliske. It is because of them that I survived another and another and another and another day....