THE NEW YEAR COMETH

I don't know what the full moon portends - my daughter said it was madness; I thought it affected the tides. Cornwall is surrounded by water - English Channel to the south, Atlantic Ocean to the west, the River Tamar splicing us from Devon. There has been a lot of rainfall lately and the waters are rising.

Some things don't change. The Festival of Nine Lessons and Carols doesn't change, except this year, the Dean and members of the Chapter were handing out mince pies and hot spiced apple juice to the people queuing to get in last Sunday. (This service is so popular, they repeat it on Christmas Eve.)  The shopping frenzy doesn't change - food halls crammed before Christmas, shops opening their doors at 6am for the Boxing Day sales.  What changes then? The weather, the moon, the tides. They change,  and the news, of course. The news always changes, irrespective of our attempts to stay it with a few days in front of the TV or at the sales. But I love Christmas because it is, in spite of everything, a respite, one of those Magic Mountain moments in which time contracts and shuts out the never ending march towards the future -   Janus, the two-headed Roman god who can look both forwards and backwards, but who gave us January.

And I look backwards to those friends of mine who have been having cancer treatment this year, and forwards to those who will have treatment next year for cancer and cardiovascular disease and who, like me, will still be here seven years later, not just because of medical intervention but because they still have things to do which carry them forward and infuse them with hope and will and a sense of the ineffable.

Full Moon over Truro on Christmas night. (Morgellyn)

BOOK LAUNCH - 'GRAVE TRUTHS'

My relaunched title 'Grave Truths' is now available on Amazon Kindle. Click the link below for a sample:

http://www.amazon.co.uk/Grave-Truths-ebook/dp/B00ASLDT0O/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1356602622&sr=1-1

TINY TIMS

Recent events in Connecticut made me think of A Christmas Carol. Tiny Tim, the child without a future:

"God bless us, everyone"


God bless us, everyone and Happy Christmas.

photo by Cara Loukes

BOOK LAUNCH: REMAINS OF THE DEAD

My new e-book,  launched yesterday by Endeavour Press,  is now available on Amazon.

http://www.amazon.co.uk/Remains-of-the-Dead-ebook/dp/B00AHVFYR6/ref=dp_return_1?ie=UTF8&n=341677031&s=digital-text

Readers of this blog may know that I write psychological thrillers involving the dead  (victims of murder, victims of social neglect,  sudden heart attacks, dramatic suicides). They are commercial but serious in tone - at least that was my intention when I wrote them. I'm now flattered to see my new publishers (Endeavour Press)  comparing me with Patricia Cornwell and Kathy Reichs in the Amazon publicity.

What I want to say to anyone reading this post who may be having cancer treatment or just had a new diagnosis, is that my books are most definitely not inspired by cancer but by my long career as a flaneur -  a term defined by the French poet Baudelaire as someone who wanders the streets of a great city, constantly observing the crowds who pass by and inventing stories about them.  I started doing this when I first lived in Paris  as a teenager and sat for hours in cafes watching 'le grand spectacle' of people walking up and down the boulevards, and listening in to their conversations - often startling and always disjointed and surreal because,  as an eavesdropper,  I only ever caught the gist of what was going on.  I slid easily into the psychological thriller genre perhaps because it seemed to develop naturally from my observations of big city life.  All my novels are set in London, where I lived and worked for nearly twenty years and which continues to inspire me every time I go up there, which is often, because  I always find something new. London is the focus of my inspiration and Cornwall is my writing base. I find it difficult to write stories about Cornwall because it has never presented me with any tensions - apart from my hospital treatments. And therein lies the single link my fiction-writing has with cancer.  When I was recovering from chemo, neurosurgery et al,  I was unable to write at all and lay staring the oak outside my window, dreaming up dark tales...

THREE DEGREES

This message came into my mail box today. Timely, because those of you who follow the blog know it's an issue that has long been on my mind:

""Dear Anne,

Local campaigns to protect our NHS are getting going all over the country.

38 Degrees members in St. Austell and also county-wide are working to prevent privatisation of the NHS. The county-wide group recently met with the Kernow Clinical Commissioning Group (KCCG). They delivered the 38 Degrees petition and discussed changes to the CCG’s constitution that will help to protect locally NHS services.

Ellen, a 38 Degrees member in North Cornwall, has also made this request:

"A group of us from North Cornwall would like to get together to work on local issues. These may include problems with Serco’s out-of-hours service and the lack of staff at the Launceston hospital.”

If you’d like to get involved there’s a meeting on:

Thursday 6th December, 7pm

Clease Hall,
Clease Road,
Camelford, PL32 9QX

Directions: If you're coming into Camelford from the west, turn left opposite the Co-op store and take the first left into the Hall’s carpark. If you're coming from the east, turn right opposite the Co-op store and take the first left. The Hall is opposite the North Cornwall Museum and Gallery, which will be closed.

If you'd like to get in touch with Ellen, you can call her on 01840 230 311. If you have any questions generally about the 38 Degrees NHS campaign, please email ccgsupport@38degrees.org.uk.


Thanks for being involved''
 

SECONDARY BREAST CANCER AWARENESS DAY 13 OCTOBER

October is breast cancer month when all the pink ribbons pins, lipgloss et al  go on sale in high street chains that support Breast Cancer charities. Please support awareness month by donating or by buying one of these items. The metal badges make very good (and chic) lapel pins - I have quite a collection of these now!

Many women with breast cancer are treated initially for primary tumours, and, provided the disease hasn't spread to other parts of the body,  they can be cured.  However, Secondary Breast Cancer (the type I've lived with for seven years) can't be cured, only treated, which is why Breast Cancer Care are launching a special press campaign for Secondary Breast Cancer patients on 13 October. The issues affecting women living with secondary (advanced) disease are very different from those with primary breast cancer  - see the My Day posts on the BCC website. The link is at

http://www.breastcancercare.org.uk/secondary-breast-cancer-awareness-day/day-your-life/anne

The link for the blog launched 13 October 2012 on The Huffington Post is

Anne Morgellyn: Shining a light on Secondary Breast Cancer

my desktop (Anne Morgellyn)

TAMOXIFEN TALES

Tamoxifen is the daily drug in tablet form that keeps my hormones at bay and stops them collaborating with cancer cells to produce something nasty. Along with my Herceptin treatment, I have been on Tamoxifen for seven years, but whereas I have never missed a single cycle of Herceptin  in all that time, I have, on a couple of occasions, forgotten to take Tamoxifen. This freaked me out two years ago, when I forgot to take the tablets on holiday to Budapest. In fact, I was so concerned about withdrawal symptoms after such a long time on the drug,  I nearly didn't board the plane, but could see that this would have been a considerable disappointment to my teenage daughter. The following morning, however, I felt just the same as usual and  enjoyed a week's break  - and a break from Tamoxifen - in one of my favourite cities. Budapest spas are good for the soul (see posts in the early years of this blog to see just how good those hot springs are...).

Anyway, because I'd missed a week's Tamoxifen before and lived to tell the tale, I wasn't too bothered when I went to Boots Pharmacy this morning to collect my tablets and was told they weren't there. My Tamoxifen scripts are on repeat, meaning that Boots take responsibility for contacting the GP Practice when the prescription is due  and collecting it for filling. They used to deliver the tablets to me at home when I was really ill from the brain treatment, and they got my emergency steroids to me within an hour of the consultant instructing them. All in all, I have been very impressed with Boots, so was surprised when I couldn't get through on the phone to the pharmacy all day yesterday, nor this morning when I rang again to check that the script had been filled and was ready for collection.

All became clear when I arrived at the pharmacy counter in person just before lunchtime. A gang of numpties (all women, I'm sorry to say, and of the species unhelpfulus unsympatheticus  GP receptionistae) had replaced the old reliable staff, like the South African lady who always showed patience, sympathy and forbearance to the endless line of sick people queuing for their scripts. I have to say, though, that even with the old regime, there was never a time when I went to collect my Tamoxifen tabs that I didn't witness some poor bugger (as Dr Wheatley would say) upset by the news their medication was missing: Boots always blame the doctors; the doctors blame Boots. Today, Boots tried to blame me by implying that I hadn't requested a repeat script -  but, I countered,  it was their pharmacist who set up the automatic repeat scripts process several months ago; in fact, she urged me to subscribe to it to save me the bother of ringing the GP practice (always a challenge) myself. When I pointed this out,  also mentioning that the drug in question was a cancer drug, the most helpful one of the gang began searching the computer screen and then a series of logbooks. This confirmed that the repeat had indeed been set up, although last time I went there to collect the tablets, on 15 August, the holiday girl had failed to log the next due date. I said I was going away on Thursday for six days and had run out of Tamoxifen on Sunday, so it was sort of imperative now that they find and fill a script before I left for London. I said it should have been ready on 13 August and I had called them several times yesterday, and again this morning, to check it was there, but no one in the pharmacy had picked up the phone. In fact, I did get what sounded like a pick up this morning, but whoever answered hung up straightaway - dare I say with exasperation, which is the way I hang up when badgered by telesales people to take out unnecessary insurance policies or demand that I give them my log in details because my computer is broken. (A friend of mine fell for this last one and they cleared out his bank account, but I work with Mac, not Windows, so I told them to sod off.)

And then came a supremely numptyish remark from one young numpty on the pharmacy counter.  I hope Boots haven't just taken her onto the permanent staff:

'The phones are old,' she said. 'They don't always work.'

This asinine response reminded me of the truly numptyish English teacher at Penair School in Truro who assured me at parents' evening that she did indeed correct my daughter's homework. The policy was to correct five mistakes at a time.

All this may sound funny, trivial even, but it isn't funny for patients waiting for essential drugs, only to find they either haven't been signed off by the GPs (let's not forget the £100K plus annual salaries for writing scripts...), or have gone AWOL in the pharmacy, lost amongst the munchkins.  And it kind of vindicates my decision not to come off Herceptin, administered at home to me still by a super-efficient private health care agency with their own pharmacy, in regular three weekly cycles. The drill there is that their receptionist-  pleasant, helpful Dawn, rings me a week before the treatment is due to make sure I am all right before she orders the dose to be made up. Would it were so within the NHS. I wonder how diabetics fare, or people with chronic heart disease, people who need stettins, steroids, morphine substitutes, all the helpless parade of sick supplicants who rely on community medicine - GPs and pharmacies, for the prescriptions that keep them well.

anne morgellyn

BIZARRE

 I went to the oncology clinic on Wednesday, prepared to defend my case against coming off Herceptin,  waited forty minutes till I was called, then sat with my daughter in the consulting room, waiting for the knock upon the door. It opened to reveal a junior doctor, struggling with the bulging file that holds my notes. She introduced herself, shaking my hand and explaining that she was doing her oncology rotation. She asked if I'd been having any problems.
'No,' I said, 'But...'
'Do you check yourself regularly for lumps?'
'Yes.'
'Do you mind if I take a look before you go?'
'Not at all,' I said, unbuttoning my blouse.
'We were expecting to see Dr Wheatley,' Cara weighed in. 'My mother has been really worried about this all summer. She's been really anxious.  She thought she had to stop it....'
'Dr Wheatley wrote to me in June,' I explained. 'He asked  me to make an appointment to see him to talk about coming off Herceptin.'
   The young doctor sought refuge in my notes. 'These are what I've just been looking at -  October last year...tolerating Herceptin well...continuing with treatment...six monthly review in clinic....'
'My last clinic was this February,' I said. 'Then Dr Wheatley wrote to say  that he'd been reviewing my notes and to ask me to bring the October clinic forward so he could talk to me about stopping my treatment. He said he wanted to book me in for some scans before he did anything. I've thought it over,' I added, handing her the list of pros and cons. 'Perhaps you could give him this? It says I don't want to come off Herceptin.'
'He's here,' she said, confused. 'I'll just go and ask him.'
   Five minutes later she returned with the message that I could carry on with Herceptin if I wanted to. It was just a suggestion, that's all.
'Great,' I said. 'So I carry on as before and you'll write me a new script?'
  She looked doubtful but gave me a slip of paper for the receptionist to book an appointment in six months' time.
  Cara and I stood up to go. I wanted to quit while I was ahead. As we opened the door, we saw Dr Wheatley walking down the corridor, his back to us.  He rounded the corner, out of sight.
   'Bizzarre,' I said, 'But I got the outcome I wanted.'

Stonewall at Sete by Cara Loukes

HERCEPTIN - PROS AND CONS OF COMING OFF

A Significant Consultation looms this Wednesday, when my consultant will talk to me about coming off Herceptin after seven years but continuing with Tamoxifen and/or starting me on any other chemo concoctions should the disease recur.  These are the notes I drafted to take to the Sunrise Clinic at The Royal Cornwall Hospital, along with my daughter and former partner, who are coming with me for moral support (fingers crossed).

---------------------------------------------------------------------------------------------------------------------------------
Pros and Cons of stopping Herceptin treatment

     Pros

1. Possibility of cure after initial diagnosis (March 2005) - although the advanced disease was then deemed in clinic to be incurable but treatable, endorsing a current statement on the Breast Cancer Care website: 'A diagnosis of secondary breast cancer means that the cancer cannot be cured, although it can be treated and controlled, sometimes for years.' (BCC website 3.8.2012).

      2. Freedom from three-weekly cycle of treatment at home enabling greater social movement and possible reduction of on-going side effects - slow hair regrowth, fatigue, runny nose, nausea, etc though I suspect that these are more likely to be the result of brain tumour treatment.

     Cons

1. Likelihood of recurrence: I have found no statistical information about incidence of recurrence in the UK, although a US website (Her2) reports recurrence ranging from four months to four years. My disease returned four years after first diagnosis (March 2005) in the only area undefended by on-going Herceptin treatment - my brain. Since I felt increasingly well in the first four years on Herceptin, I conclude that my physical deterioration since the second diagnosis (brain mets in March 2009) is largely due to the treatment I had over the course of that year: surgery, steroids, radiotherapy, and heavy doses of antibiotics to treat my meningitis. I believe that, had I not been on Herceptin throughout that long and invasive treatment, my weakened physical condition would have slowed down my recovery because Herceptin was still controlling the disease progression in my body. I have seen some reports, suggesting that patients on Herceptin did slightly better when undergoing treatment for a brain tumour.

    2. Need for more scans, clinics, etc after stopping treatment

        Increase in trips to the hospital for scans and tests would impact on my current work and family       commitments, as well as expose me to further radiation.

    3. Negative effects on family/personal life:

    I am a lone parent with responsibility for my daughter, aged 17, who is about to embark on her A level course. Her scholarship at boarding school has enabled her to circumvent the worst of my treatment and side effects over the past seven years, especially the effects of the brain tumour on my general condition; but she is still dependent on me and anxious about my stopping treatment – as, frankly, I am myself. I don't want my anxiety and uncertainty about this change to sabotage her objectives – gap year, university, etc., nor do I want to risk recurrence of the disease which would make me ill again and further reduce my ability to take on work to support myself and my daughter.

    4. Psychological effects: While on Herceptin, I have been able to manage my anxiety very well, largely because of the regular monitoring by the Home Care nurses and three-(now six) monthly hospital clinics. I am very concerned about losing this regular and reassuring contact with clinicians since I have absolutely no confidence in the shambolic care offered to cancer patients in the community. When he finally discharged me after five weeks in hospital, the neurosurgeon told me to 'cut out the middle man' in future since the GP had misdiagnosed my brain tumour as 'labyrintitis', in spite of my Herceptin nurse's requests that he pay me a home visit to see my worsening condition for himself.

 I have no confidence in the local Macmillan service either, although I understand that they are the service for cancer patients in the community, paid for and delegated by GPs in Cornwall. I requested a visit from a Macmillan nurse in Feb 2009, when my condition was worsening, but, like the GP, she too dismissed my concerns, stating that I was 'just a bit depressed'. I have always been able to approach my cancer treatments in a positive spirit with the ongoing support of the home-care nurses and the hospital. Herceptin enables me to live with the idea of survival; stopping it means a return to uncertainty.

Another cause for worry is the locum/Out of Hours service, Serco, which recently failed four of the essential standards of care, including the supervision of GP's joining the service, some of whom had allegedly not completed their medical training ('Cornwall GP service Serco 'not meeting essential standards' (BBC news report 18 July 2012.)

Conclusions:

Since the Herceptin has controlled the disease in my body for seven years (pending further scans this autumn), my overall assessment of the proposed change is that I would risk more by coming off the treatment than staying on it at for at least another year so I can continue to support my daughter and hold on to the Home Care nurse support, which reports regularly to the hospital, notes any changes in symptoms/side effects, and thus maintains well-met standards of care. The latent and case-specific nature of my cancer has always implied uncertainty (for me) about a cure, so my preference is for controlling it prophylactically with a drug that has so far enabled my hold on life. I understand that other women with advanced disease have remained on Herceptin after being treated with it for longer than me, which raises still further questions and doubts about my being advised to stop now.

-------------------------------------------------------------------------------------------------------------------------

Sunrise at Llandudno by Anne Morgellyn

UNCERTAINTY

I returned on Monday evening from the South of France to an unsettling communication from my consultant, proposing to stop my Herceptin because he 'feels I may be cured of my disease and there is no real need' to give me Herceptin now because it can't treat the brain tumour - assuming there is any residual disease up there. Although he'd mentioned coming off treatment to me last year and I was expecting him to bring it up again, the letter threw me into a state of anguish, with the company of stress-reacting side effects - nausea, vomiting, dizziness, coming into play throughout the wee small hours. I spent a pretty nasty, emotional night, fuelled my the awful prospect of a summer spent in clinics and scanning rooms, when I'd planned to go for car and camping trips with my daughter. In the morning, however, I felt more peaceful and went into town to do some shopping. And suddenly a strategy presented itself: postpone the appointment until the summer's end to buy myself more time. I  wrote back to Dr W, indicating that I'd be willing to think about coming off in terms of 'a holiday' from Herceptin, with scans after 6 months or so, when my driving licence is to be reviewed, but stating my concerns about the possibility of recurrence and how I would be monitored if I did come off the drug. After I'd posted the letter and rung his secretary to book an appointment in late August, I felt I'd executed a sort of diplomatic appeasement.

This morning, I showed Dr W's communique  to my treatment nurse and she said I should proceed with caution. Two of her other patients had received a similar notice to quit and had had reacted by 'throwing their toys out of the pram': they are both continuing with their Herceptin. This was reassuring in the sense that it showed me I do have a choice based on precedent.  I had thought I was taking control of the situation by writing to Dr W but now I can't see the wood from the trees.

If anyone reading this has been put in a similar quandary after using Herceptin for seven years, please share your experience by posting to this blog. The Macmillan site has zero information on the forums, so I've requested that they start a new discussion group for Long-term Herceptin Users An American site I found had some exchanges about it, and the stories of recurrence presented a range from two months to four years. I'd done four years on Herceptin when the disease recurred in my brain. I know the brain mets could not be treated by Herceptin, but I am now thinking of the cancer travelling to other parts if I stop the drug because Dr W told me once that it was 'keeping it at bay in the body'. I know it can go to liver, lungs and bone - I've seen plenty of women in the chemo room to whom it had done just that.

The main thing that struck me about this latest development in my treatment plan is the question of security (maintenance on Herceptin) versus uncertainty (surviving without it). I think I can cope with uncertainty, but I am hopeless when it comes to making a decision. Since this decision concerns my survival, I want it to be an informed one so  I'll have to use these next two months to gather my own 'evidence' before I discuss it with Dr W in person.  It is easy to slide under the influence of a consultant, especially one who has saved my life twice.

Why do I feel so unnerved by all this, when he mentioned the word 'cure' ?

Trees at Sete by Cara Loukes

OUT OF HOURS CARE UNDER THE COALITION

Three years ago, when I was close to dying from meningitis, an infection I caught post craniotomy, the kind friend who was staying with me got on the phone to Serco, the agency responsible for out of hours calls to GPs, because most  GP Practices, at least those in Cornwall, don't make house calls;  they leave emergency appeals from patients and carers  to NHS Direct, Accident and Emergency Units, and to agencies like Serco.

The prompt action of my friend and the locum who attended me that night saved my life. I wonder if it would be the same scenario today, since Serco now appears to be drowning in a sea of suits and excuses following reports that there are longer and longer queues for out of hours calls and not enough locums to make house visits. I have long had misgivings about the competency, care, and accountability of GPs, so this news about Serco is particularly unnerving.  I think my only recourse in an emergency is to do as my neurosurgeon told me and 'cut out the middle man'. In other words, head straight for the hospital. Visions of angry and suffering patients spring to mind, hammering on the doors of A and E. It's a disgrace that the United Kingdom, pioneer in treatment for all at the point of need, should have come to this. Dark times indeed.

Photo: Richard Faisey

PIP REPLACEMENT

In a recent post on this blog, I wrote about faulty breast implants (PIPs) and the  cost to the taxpayer of removing and/or replacing them on the NHS. This post is about a different type of PIP - the government's Personal Independence Payment which is to replace Disability Living Allowance (DLA) in 2013. To be eligible for PIP, you must be aged between 16 and 64, satisfy a daily living and/or mobility activities test for three months prior to claiming and be likely to continue to satisfy this test for a period of at least nine months after claiming (you can tell this is government-speak); pass a residence and presence test; and pass a habitual residence test, whatever that may be.

This new PIP is obviously designed to root out all the malingerers who have been claiming DLA on false pretences, using fake or faint disabilities to reap the award and cheat the Big Society taxpayer. That there are such malingerers about, I don't doubt for a second; but where does this change from DLA to PIP leave the bona fide claimant? I suppose the government would argue that if these others are genuinely bona fide, they should have nothing to fear from a new set of eligibility tests. But I smell a rat. As it stands, DLA is one of the toughest benefits to claim: the application form is enough to test the sharpest minds, let alone those weakened by illness or disability. Metastatic cancer has been given disability status, but when I tried to claim DLA in 2005 after I was  diagnosed with secondary breast cancer, I was fobbed off, first by a Macmillan nurse and then, when I persisted, by the Department of Work and Pensions (DWP). It was only when I was in a catatonic state after my treatment for a brain metastasis four years later that I was approved for DLA, and that was due to the kind lady from the Citizens' Advice Bureau who helped me with the form by going through the questions with me and acting as my scribe. Had I had to fill the form in on my own, I wouldn't have had the energy, although I had had to stop work and desperately needed the money. I gave up the first time because I had some private health insurance to fall back on (although that shouldn't have affected DLA), but by the time I'd reached the brain tumour stage, I needed the benefit safety net.

I don't mind undergoing a PIP test in 2013, but I am wondering how they are going to gauge the level of my disability on a day-to-day basis. That I have a long-term disability I am in no doubt, and I am on Herceptin and Tamoxifen indefinitely to defend me from what my consultant calls further trouble; but I have good days and bad days. Since my treatments in 2009 (two craniotomies, the second one to stop the march of meningitis, cartloads of steroids and antibiotics; and the largest dose of radiotherapy I could have received without it killing me), I have made a slow but uncertain recovery from the effects of all these interventions. This means I have disabled days, when I am laid out by fatigue or veering side to side when I walk more than forty yards, and better days, when I am able to do simple household chores, so long as I don't reach up - reaching up and turning round too quickly make me dizzy and I lose my balance. I know that I will be living with these side effects for a very long time, not to mention the threat of further trouble, which is why I can't commit myself to regular work outside the online work I do at home, and this is why I rely on my DLA. I know I won't be the only one in this position.

BUDAPEST DAYS

Budapest is a state of mind for me. I love it there. My daughter and I have recently returned from our latest trip, having been to the city practically every year since 2002. We always go in February or early March, partly because it is low season, but mostly because the cold and the thermal spa make a heady sensual contrast. This year's trip to the spa seemed especially beneficial to me. Because I no longer have the stamina to swim in the large Gellert pool, I went straight to the women's baths and spent the whole time wallowing in the 38C and 36C pools. The hot water, which comes from one of the many thermal springs under the city, is so dense with minerals, it is possible to float in it and fall asleep. After dozing off a couple of times, I did the only Qigong exercise I have managed to learn, together with a couple of made-up stretching movements to work my stiff legs. I could stand on one leg in the thermal water without falling over. I can't do that at home any more.  A month after my mastectomy in October 2005, I was back in that water with a very dear man. During the previous months, I thought I wouldn't travel anywhere again. I thought I wouldn't live to see fifty. I thought I wouldn't live to see my forty seventh birthday.

This February's trip was our tenth anniversary at the hotel, and, without requesting it, we were given the same shabby middle-sized room with a turret at one end that we had on the first visit. I had my forty- third birthday during that first stay and the management sent up a bottle of  Hungarian champagne.  Since the intervening years brought us more spacious rooms with views of the Danube (thanks to a tame concierge whom we got to know), we were disappointed to get the very shabby one again last month. There are hundreds of rooms in the old grand hotel hotel, all old fashioned, with different gradations of shabbiness.  We were about to ask for a better one when I realised that the turret room had been part of my life Before I Had Cancer. It then took on an almost mystical significance, thanks to the uncanny influence of deja-vu. I felt that I had come through some tremendous event, which I suppose I had after the two craniotomies, the meningitis, and all the other treatments. I had circumnavigated it. I had come full circle.

I wrote about the thermal spa in my first posts on this blog in 2008. Perhaps I should write more about it, but the soporific effect of the water empties my head, as it emptied when I went offshore in a fishing boat in the early 'Nineties, or on the lake steamer last year at Como. This empty-headed-ness, this ability to switch off when I am in or on water has taught me to cope with the stresses of living with cancer for the last seven years. I don't know anything about water-based healing, but all I have to do is imagine that state of soporific weightlessness and I can float  - metaphorically speaking, and transcend it all.. I think of it every third Thursday when the nurse comes to cannulate me for my Herceptin infusion. I put my hands in hot water and think about the Budapest spa. 

PIPS AND SQUADDIES

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

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

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

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.