BATTLE FATIGUE?

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

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

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

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

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.