Paradox

The following is a post that I wrote more than a week ago but didn't publish at the time................. well, in the light of 'Homo horizontalis' (7th November) just remember, Oscar Wilde said that paradox lies at the heart of human existence.

Dear reader, proceed..............

I know what I have to do - cardio-vascular exercise. I can continue with my pilates-cum-yoga but I need to ensure that I get more oxygen into my bloodstream and rebuild some of the lost bulk in my muscles. (Yes, I did say 'rebuild'.) So, unsure as to the wisdom of attaching a drainage pipe from my bank account to a gym, we've been looking at a piece of equipment for the home; an upright exercise bike, a recumbent or perhaps a cross trainer. We have looked online but my QEH physio suggested visiting Decathlon in the same retail park as IKEA in Wednesbury. Diana is immediately interested in anything adjacent to IKEA.

Recumbent bikes are not available when we find Decathlon but by the time I've tried a few cross trainers and uprights, I'm exhausted and sore-footed. IKEA appears increasingly attractive.

Then someone had a brainwave. It may even have been me. Why not contact the people at Moseley School's own LA Fitness Centre (that's LA as in Local Authority)? So, I renewed my acquaintance with Jag, the centre manager, who was incredibly helpful. I explained about the cancer and degenerating, scoliotic spine and rather than put the phone down he was willing to talk, taking an holistic approach to my condition and the part exercise might play.

He has already given me the opportunity to experience recumbent bikes in the gym and promises to design a personal exercise routine for me at home. Meanwhile I can use the gym and spend some time on the equipment there. He advises me not to rush into a purchase.

One item we have decided to purchase immediately is a seed and wheat grass sprouter complete with its own automatic mist watering system. We aim to grow a lot more sprouting seeds and possibly wheat grass.

If we invite you for a  meal, you're in for a real treat.

Homo horizontalis

Increasingly, the floor opens her arms in welcome.

I am alone at such moments - perhaps tending the wood-burning stove or retrieving a domestic object that has reached the surface of our planet (well, but for the rug, the boards and the cellar's brick flooring............). I then find myself tempted to go down onto 'all fours' and mimic our mammalian cousins (but alas, without their infinite capacity for fluidity, ease and grace). No, I rheumatically flex my hips and lumbar spine in the manner that I have been taught by my Pilates instructors.

But this is merely a device, a self-deception, because soon I have descended yet further, finding relief in allowing my burdensome trunk to make full surrender to the force of gravity.

Ah gravity - throughout our lives we fight this invisible monster. We unashamedly surrender to it in moments of Wembley or Wimbledon-winning exultation, when sleeping, when unwell and when partaking in other unmentionably playful pursuits; but generally we are encouraged, instructed even, to fight it in the spirit of our prehistoric forebears - head up, shoulders back, stomach in, knees straight. (This is the litany Diana recites for me on a regular basis).

But little by little, day by debilitating day, gravity works a crooked finger into our athletic resolve - the bent knees, the slumped shoulders, the further curving of the spine. Is it surprising then that the word itself has been leased for use when a term is needed for that which is serious, weighty and solemn?

As for me; at last I lie in splendid solitude - I roll over, onto my back, every part of me now blithely cemented to the floor. Gravity wins - and I can relax.

There is dangerous comfort here.

Time to rise - and shine?

The journey.

A lot has been happening.

I did make an effort to blog about my journey to Norfolk a week or so ago but after spending many hours (I  kid you not - these posts are not run off in a trice, as though things of fleeting fancy) but I managed to lose it, owing to my incompetence with technology, not once but twice. After much weeping, wailing and the replacement of a battered keyboard, I decided that this particular post obviously wasn't meant to be shared with the blogosphere. I let it go. All that remains of it, ground-breaking and post-modern as it was, is now consigned to my imperfect and rapidly fading memory.

But this is a new day and so I will start from here. My most up-to-date medical bulletin should include reference to the visit I made to the Eye Clinic at the QEH last week. Diana dropped me close to the main entrance of the new hospital because my feet were too sore to make the half-mile walk from Harrisons Road, where we usually park, in order to avoid the car parking fees. Lest you think us skinflints, we must have made more than 50 visits to the hospital in the last 18 months. 50 x £3 or £4 helps to defray the costs of our membership of nearby Winterbourne Gardens and the copious quantities of green tea and baked potatoes we have consumed there as part of our post-appointment therapy.

So, as I crossed the road and approached the curving pedestrian path that leads to the hospital's huge revolving doors, I was a little surprised to see a number of camera crews confronting me. Surprised, because we hadn't mentioned my appointment to anyone so I hypothesised that this was another instance of  the regrettable practice of leaks within the NHS (viz; recent episodes of The thick of it).

As it turned out, the interviewers allowed me to pass unmolested, for which I was grateful if a little perplexed.We learned later that these crews had been distracted by the arrival of a young girl from Afghanistan.

But the headline news from the visit was good. The consultant announced that there was no further trace of the small haemorrhage in my right eye. I have been discharged.

Ophthalmology ticked, just orthopaedics and oncology to go.

Writing of oncology; there is news here too. The week before last we had visited the Cancer Clinic to discuss the sore feet side effects of the chemo. We were greeted warmly by the consultant, another doctor on placement and two specialist nurses. Though the team were interested in all side effects over the course of the last few cycles, I explained that it was the sore feet that were seriously impairing my quality of life. The consultant agreed that 'the cure should not be worse than the condition' and after examining the soles of my feet agreed that the dosage for my next cycle would be reduced. He also said that very few patients reach this point on the maximum dosage, which was some consolation.

I say consolation because reducing the dosage must entail the possibility that the efficacy of the drugs will be reduced. The next CT scan in approximately three months will reveal all.

Our fervent hope of course is that our efforts on exercise, meditation and particularly diet will give me an added advantage.

We are discovering however - or rediscovering - that however far you travel with diet, there are always further steps you can take. So, last weekend we went to a gathering at St. Columba's church in Moseley. We had been drawn by the promise of an appearance by Jane Plant (author of 'Your life in your hands' and other titles). It was Professor Plant we had consulted soon after my diagnosis in May of last year (see post, Friday 1st July). Unfortunately she had to withdraw owing to illness but we nevertheless found ourselves in a strange world of alternative therapies and spiritual healing.

The focus for many of the talks we attended however was on the benefits to be derived from raw and living foods. It is for each of us to undertake these journeys. Ours has already taken us through organics, to vegetarianism to veganism. I don't wish to proselytise but despite our difficulty with some of the ideas we were impressed by the promise of raw veganism.

If you were about to invite us to dinner, don't worry! We are not planning to be total converts - we will continue to have our omnivorous, even carnivorous and certainly cooked moments. At this stage we simply plan to add more juicing, raw food smoothies, sprouting seeds, salads etc to our diet.

However, if we are about to invite you to dinner you may want to consider whether the flowers are edible and the chocolates caffeine-free!

'I have a dream........'

Saturday 22nd September.

I awoke this morning, pulled back the quilt, swung my legs out and over the side of the bed and sat up. Then I stood up, opened the bedroom door and walked along the landing to the bathroom.

How dull, how prosaic is that?

But then it struck me - Sat up? Stood up? Walked to the bathroom? This was far from prosaic - this was, in fact, extra-bl**dy-ordinary, fan-bl**dy-tastic. (You may think the *s unnecessary - but in such matters I remain very 'old-school').

So, by way of explanation, let me take you through, what has become, my normal morning routine - wake, pull quilt aside, use my arm to lever myself into a sitting position, stand with the assistance of my fingers splayed against the bedroom wall, wobble and hobble along the landing using the banister and wall for support as some grudging, grinding mobility returns to my knees and perpendicularity to my spine. When I then descend the stairs I do so with that 'old-man', deliberateness, thinking hard about which foot follows which and again making judicious use of banister and wall.

But  today, I go down as I used to go down - presumptuously, unthinkingly, unhandedly as though my joints and particularly my spine had been oiled with WD40 (not as Di's mother, Jill, once famously malaproped when confronted with a rusty lock - 'any UB40?')

This could only be the 'epidural dividend' - paid less than 24 hours after I had undergone the procedure at the QEH on Friday morning (just one day after the appointment with the oncologist (see 20th September post) . For those of you who have the staying power and good memories - you may recall that I had a procedure at the Royal Orthopaedic Hospital nearly a year ago (see post 23rd November 2011). I thought at the time that this had been an epidural but was disabused of that notion when I was referred to the QEH pain clinic. Apparently, I'd had something called a 'nerve block', a more targeted procedure than an epidural. The latter  entails injecting painkillers and steroids into the spinal column's epidural space and flooding the area in an attempt to 'block the transmission of signals through nerves in or near the spinal cord'.

Tuesday 25th September

Three days have now passed.  That Saturday morning I was euphoric. Diana and Joe were convinced that I was singing in the shower. I was in fact intoning, annotating, exulting in Martin Luther King's famous address to the civil rights crowd from the steps of the Lincoln Memorial ('I have a dream....................) It just came to me. ('Let freedom ring...........' ) To have some mobility back after such a lengthy time was liberating ('Free at last!. Free at last!') but I think it caused me to overdo things that day ('I may not get there with you............').   After my exertion in the shower (!) I attended an allotments conference in the city in the afternoon before walking through town to meet up with Joe and then watch a movie at the Electric Cinema on Station Street. 

For most of you, I'm sure that such a programme would be a very modest achievement but not for me. I realised then that, whatever the improvements, there remained some serious limitations. As I write on Tuesday morning, I know that the 'neurological pain' in my left leg is still there (and possibly worse?) and the 'gross mechanical pain' in my back is still there too. There is however, the prospect of further change. I was told that it could be weeks before the cocktail of drugs had their full effect.

I must add that once again, I am full of gratitude and admiration for the 'slickness' of the operation and for the professionalism of the staff at the QEH. The entire epidural procedure took a few hours only because I was towards the end of the list but everyone was very accommodating and pleasant.

And I don't know if such a competition exists but for bringing me to a state of shower-shouting celebration last Saturday, the surgeon gets my vote for 'clinician of the year'.

Quantity or Quality?

The news is good - the latest CT scan showed that the position with regard to the nodules was 'entirely unchanged'. In other words, all is stable. However, there were one or two caveats; firstly, 'stability' is defined as 'within 10% growth or shrinkage' and more disconcertingly the registrar made reference to two nodules we didn't even know existed. One is a lymph node in the chest and the other, a sclerotic lesion in the pelvic bone. Hitherto, we had been led to believe that all tumours were in the lungs. Anyway, she insisted that these were not new lesions and that this therefore meant that the drugs were still working and would continue to be provided.

I raised some questions about my increased difficulties with mobility, particularly walking and asked how far the drugs might play a part in this given that there are other confounding variables such as my knackered knees, my lumbar spine problems and the medication I take to manage the neurological pain, not to mention the general ageing process. She thought that there would have been some build-up in the body of the Sunitinib and this would create problems that could only be addressed by reducing the dosage, extending the drug-free 'holiday' or transfer to another drug. I have been on the highest dosage for more than a year and this puts me in a relatively small group.

It appears that there is an increasingly-apparent choice to be made between the quantity and the quality of life.

We agreed that I would continue on the top dosage for the coming cycle (starting tomorrow) but that we would review the situation with the consultant in three weeks time.

Meanwhile, we continue to explore and enjoy that which is available on our diesel-reached doorstep.

Yesterday, following lunch with John and Jenny at Hanbury Hall, we (that is Diana, myself as well as Joe, recently returned from his summer sojourn with girlfriend Verena in Budapest and Bavaria) travelled on to another location listed in my Betjeman's Best British Churches. This one, Dodford, is a couple of miles to the northwest of Bromsgrove and just a short distance from the A448 that heads out in the direction of  Kidderminster. It is described as Arts and Crafts Gothic but as we pulled into the car park, the external appearance was unprepossessing. Squat, with walls covered in a dull pebble-dash finish, it appeared to have little to commend it.  Had we - and Betjeman - made a mistake?

A solitary elderly gentleman, seated in the sun, asked whether we were with a party making its way to this point from Rosedene Chartist cottage. We confessed that we were not and he then offered to take us around the church with his party once they arrived. In the meantime, he would explain the Chartist connection with the village of Dodford......................

Through this moment of serendipity we were able to see and appreciate the reasons for the selection of this  church as one of  'the best one thousand churches in the United Kingdom'. I intend to read up on Chartism and visit Rosedene, the National Trust cottage, then return to Dodford and its church. Feel free to join me.

I must also mention that a couple of weeks ago I was able to enjoy another extraordinary sight of a different nature. Neil rang and asked if I was interested in a trip to Upton Warren for a spot of birding. A migrating raptor had been in residence around the lakes for ten days, no doubt taking advantage of the fine weather and fish (a clue!) to recharge its avian batteries.

When we arrived the bird was directly on view from the car park. It perched accommodatingly on the mast of a dinghy on the far side of the lake made available for water sports. When finally disturbed by an unknowing staff member in an inflatable craft with an outboard motor, the bird obligingly soared above our knot of binoculared men.

The bird if you haven't guessed by now, was, or is, an osprey; no doubt on its way to warmer climes further south. Ten days later, when I took Joe to see it, we were told that, although present that morning, it had been missing for a few hours. We spent the afternoon in the hides enjoying other birds but there was no sign of the osprey by the time we came to leave.

Given my increased sensitivity to cold - another side effect of the drugs - I envy the osprey's ability to follow the sun without concern for passports, airport taxes, or the morally-tortuous issues of carbon talonprints.

Addendum

I misled you with my last post. Pleased though I am to have discovered Pilates, my body is in no way 'conditioned', my muscles neither 'long' nor 'lean' and my pelvic alignment a long way short of admirable.

The truth is, I am given to exaggeration.

I have just returned from the allotments in a pitiful manner; shuffling the couple of hundred yards up Cambridge Road as though aged, frail and infirm. My feet are sore and my knees, both knees, operate like  machinery lacking lubrication and thereby, internally expanding through the effects of friction and liable at any moment to seize up completely.

Today is day 28 of my 42 day cycle; the last day of chemo. I'm hoping for a quick recovery as I enter the drug-free two weeks. The day after tomorrow, Saturday, I return to my 'day job' - taking visitors on Heritage Open Day tours around the Spring Hill College building; part of Moseley School where I taught until three short years ago. I won't be much use to anyone as a tour guide with severe 'sore feet syndrome' and dodgy knees.

And next week I have a hot date with a CT scanner. A further snapshot of the soft tissue in my lungs will tell some anonymous radiographer whether those nodules in my lungs are shrinking, stable or growing. Then he or she will tell an oncologist, a flesh and blood oncologist with a computer screen to help him/her illustrate the conclusion, good, neutral or bad, with an impassive, been-here-before demeanour.

We will hang on their every word.

Ecce homo

Strange how a phrase will sometimes resonate, reappear, echo.

Ecce homo - behold the man. These are the words said to have been uttered by Pontius Pilate when he presented the scourged Jesus, crowned with thorns, to a hostile crowd shortly before his crucifixion. Ecce homo is thus the title for a scene widely depicted in christian art. By coincidence, nearly a year ago (see October 23rd 2011), I blogged about attending a talk in the Barber Institute at the University of Birmingham on one notable example of this genre by the Flemish painter, Anthony van Dyck.

Ecce homo is also the name of the convent hotel in which we spent a few days when visiting Jerusalem (see last post). Run by the Sisters of Sion, we'd warmly recommend it for the location, the simplicity of the accommodation and the stunning views from the rooftop terrace.

And ............. it's a only a small step, a simple segue, from Pontius Pilate to Joseph Pilates, the inventor of the physical fitness system to which I am a recent convert.

In the years BC (Before Cancer) (or if you prefer, BCE - Before Cancer Emerged) I was sniffy about Pilates. As a rugged, some have said, quintessentially macho kind-of-a-guy, I couldn't quite see the point in exercises that involved minor stretches and minimal movement. Give me the vigour, intensity and sweat-staining exertion of jogging, playing a game of football or circuit training. This was the way to real fitness.

I don't think like that now.

If you recall, it was the onset of my mechanical and neurological back pain that led to the discovery of the kidney tumour and the metastases in the lungs. These conditions are separate, unconnected but the chemo treatment for the latter made it imperative that I make every effort with muscles which had already atrophied and would continue to do so. However, exercise, even walking for any distance, was made almost impossible by the back issues.

As you may also recall, the medics at the Royal Orthopaedic Hospital finally got around to referring me to the pain clinic at the QEH. The doctor there prescribed more pain killers - lots of them - but also referred me to physiotherapy - and thus began my current involvement with Pilates.

In addition to several, early, one-to-one physiotherapy appointments, I subsequently joined a class in the hospital. By this time I was committed acolyte, rising early, every day, to undertake my own 45 minute Pilates workout. And - here's the big news - I was gradually dropping those painkillers, anti-inflammatories and anti-anti-inflammatories that were filling my daily drug dispensers.

My intake has dropped from a daily peak of fourteen to six and I'm hoping to drop a further two in the near future, if things continue as they have. Apart from the physical benefits of reducing my drug intake, I have experienced an important and concurrent, sense of control and renewed optimism.

That was until about a week and a half ago.

I was ending the day, as had now become usual, running up and down the stairs to the first landing, seven times (nearly one hundred steps). You see, I could never entirely give up the old (Canadian Airforce Training) macho way of exercising. After five 'circuits', I felt a sharp pain in the back of my right knee - but continued and completed circuits six and seven in some difficulty. 'If it ain't hurting, it ain't working', I murmured through gritted teeth.

That night, throughout the night, it went on 'working' and I have struggled ever since with, what can only be, torn ligament fibres.

I had to restart some of the painkillers, anti-inflammatories and therefore, the anti-anti-inflammatories. I've dropped them again now and am once more rising early to condition my body according to the teachings of 'Pontius Pilates'. 

These blips aside - if only you could see the results - the restoration of long, lean muscles, the strong core, the admirable pelvic alignment.

Once more, those words reverberate.........

Ecce homo - behold the man.

Israel; revisionist writing

Friday, August 10th; 
If you should ever travel to Jerusalem, it's probably best that you avoid telling the Arab traders who throng the narrow, fabled and historic streets of the old city that you know me. You may not yet be aware of the fact but I have acquired a fearsome reputation in those parts as a very tough haggler and several traders there are still recovering from the skills, strength of purpose and sheer audacity I displayed in our one-sided negotiations. Despite this however, I remain on good terms with them and several have told me, warmly and repeatedly, how much they like me and for this reason would make me offers that would not be made available to others. There are at least two young men who, as a result of my hard-won purchases, I am now helping to put through college.

Nevertheless - as I wrote earlier, it is probably a good idea to avoid making mention of me - just in case.

Btw - if anyone wants to buy some olive wood madonnas and authentic hand-forged mamluk swords - I still have a few (dozen) more than I need.

But Jerusalem - what a place! There is so much to say - and others are no doubt better placed to describe its incredible mix of culture, religion, ethnicity together with its multi-layered history of empire, politics, warfare and trade.

All I can say is that I have had few experiences such as that afforded by the view of the roofscape, flat and pitched, minareted, towered and domed (including the golden, sun-half-risen, dome of the rock) from the terrace of our convent hotel on the Via Dolorosa.

Or perhaps that should be the, alleged, Via Dolorosa.

Archaeology and historical research are continuously revising, qualifying and questioning the certainties that are the well-spring of tourism and commerce. But, in the end, perhaps it doesn't matter all that much - this is a city where people want and need to believe. People of faith are borrowing something from each other and in alliance against those who harbour religious doubt -  but they are also engaged in an ancient struggle to hold what they have; Jew, Moslem, Christian, (Armenian, Greek Orthodox, Russian Orthodox, Roman Catholic) etc etc and perhaps make gains at the expense of others.

It was hard to walk the city streets with their polished stone flags and steps in the severe midday heat. I discovered what may be a new side effect of my cocktail of medication - swollen feet. As I type I am suffering in a manner that causes me to kick off my lightly-tied shoes.




Thursday, August 23rd;
And there the contemporaneous despatch from Israel ended........

Events overtook us; a non-stop carousel of travel, food, visits, excursions and times for recovery. What a successful trip! Now we are returned to the UK for more than a week and Israel, the true experience of Israel, fresh and unalloyed - is disappearing through the rear-view mirror of memory. Friends and family have pounced - demanding tales and recounting of moments - and we have been ready to satisfy them. Inevitably, these memories are repeated, supplemented, polished, abbreviated until they are ready for slotting into the filing cabinet of recall, labelled; 'interesting lifetime events; 2012'.

So, you'll have to phone and spend half an hour coaxing one of us in to repeating the stories - or, visit and watch the photos each with its own accompanying oral text.

Only fragments of  the unvarnished truth remain - such as that entitled; 'the street traders of Jerusalem meet their match'................

Shalom

It's Sunday, 5th August, 9.45 pm local time in Tel Aviv. The intense light of the day has given way to the unremitting night. This is a live streaming blog. I'm on the roof of a nine-storey apartment block looking out to the west/West across the city skyline with its array of skyscraper-high, brightly-coloured neon and towered slabs of  domestic lights piled one upon the other. The incessant drone of traffic is occasionally sliced by the blare of car horns or the wail of a siren. Tonight, the air temperature is a comfortable t-shirt warm and continuously  refreshed by a fair and welcome breeze.

The sudden thrum and whup-whup-whup of a helicopter reminds me that there's a demo taking place in downtown Tel Aviv this evening; a protest against Israel's new austerity measures. I was going to go but fatigue following an afternoon at the beach with Oren and Ella, coupled with inertia, got the better of me.

This has been one helluva holiday to date - and we are only a few days into it. We've had some mini-adventures; such as that at Ben Gurion International Airport when we finally emerged, wearily, with our reclaimed baggage into the glazed and marbled arrivals hall to discover that, although we had fulfilled our part of the bargain in getting to this point - there was no-one there to meet us.

Admittedly it was 1.30 a.m. and we were an hour late but it took a tentative phone call to remedy the situation. We left the sanctuary of the air-conditioned building to enter the open oven-door heat of the night when Claire and Amichai had been dragged mortified and half awake in turn, from their beds.

This mishap aside (Claire and myself are still in a struggle to seize the moral low ground of denial) we have been made so welcome by this outpost of family. And this is a sizeable outpost. Yael has allowed us the exclusive use of her 'penthouse flat'. Anat, the youngest at 21 years, first encountered in her  brown Israeli Defence Force uniform, is solicitous of our every need. No'omi with her 18 month old baby, Ephrat, has given us a glimpse of life within the community. It was Amichai, he of interrupted sleep and Claire's husband, who first issued the invite to visit Israel. He has two brothers, Shaul and Nadav. It is only the latter we are yet to meet. Their parents, Effi (Efraim) and Rachel are well versed in the fusion and frisson of  the nuclear family.

Two days have passed - yesterday we went by train to Akko (Acre) and were made more aware of the multi-layered heritage of the old, largely Arab, city and thereby, the wider Israel.

Today we have been to Yad Vashem or Holocaust Memorial Museum. The location, on one of the hills above Jerusalem, is stunning as is the architecture of these very modern buildings. I loved the attention to detail; the use of trees and shrubs to enhance the open spaces.

That which is inside is shocking and at times, with its multi-media displays, quite overpowering  - and ultimately, very moving. Here was a time when life, Jewish life, was cheap but as the text made clear every individual was far from anonymous; each was a world unto him/herself.

From my vantage point this made sense - this blog, small and insignificant as it may be, is one part of 'my world'. Each of us carries a world inside us and I know, as I struggle with my own physical 'debility' to make my way through the hours of exhibits and video and audio, something of this vulnerability, something of this personal crisis, this threat - even as, in all humility, I experience, not humiliation and violence but the warmth, generosity and support of my own, newly-met, Jewish family.

Another holiday

The die/Di is cast.

We are going on holiday to Israel. We will stay with my son-in-law, Amichai's, family in Tel Aviv. Amichai, my daughter and their two children, Oren and Ella, will also be there. The invitation has been extended to us for some time now but was re-stated with renewed enthusiasm and generosity not long after my diagnosis last May.

So, it's been an expensive hassle getting medical travel insurance and it's a crazy time to go because it promises to be very hot but this is the right moment. I'm not sure how many other opportunities there will be and it feels important to make this connection with an outpost of the extended family. (Of course, for Amichai's parents, Rachel and Efraim, it is we in England who are the outpost - but you know what I mean.)

If I'm honest, I'm apprehensive, particularly about the travel but this has been a decision a long time in the making and having been made, will stand.

I had some indirect feedback from an ex-allotment holder the other day that suggested she saw me as somebody who was very cautious and unwilling to take risks. It's amazing isn't it from whence people get these strange notions?

Perhaps I will get the opportunity to blog on location, in Israel? Graphic, heat-stained images, tastes and aromas from the Holy Land - I need the boost in my stats. Oh! Did I mention that I can now get stats on how many people are reading my blog? and from which country? and the time of reading? and what the reader had for breakfast?

For some reason these figures have become important to me - tell your friends. I need more hits.

Living in the present - again.

I can only start from where I am. You see, I have been thinking about and half-starting this post for at least a week but for various reasons I have been unable to get onto a computer and so ideas have fizzled and spluttered and come to naught. But I will not return to where I was - I will begin afresh and in the present.

In the present. That is how I am advised to live, the way I have advised myself to live and in many respects it isn't an approach for which, in so far as I'm successful, I can take any credit, for, inescapably, it comes with the condition. And there are advantages in being 'in the moment' .... the heightened perception, the 'letting go' of old concerns, old worries ............ but there is also a high price to be paid...... the 'loss of a future'. We all do it don't we? Imagine ourselves within a future of indefinite length; one that enables us to think idly about moving house, making journeys, visiting family and friends, acquiring new skills, new hobbies. Something of that is lost when you live in the present - the loss of pleasure in an imagined life full of self-sustaining fantasy.

Enough of this whimsical musing! (Give them facts, Mr M'Choakumchild.......give them facts.)

OK. Here are some facts. We have just returned from a few days in Cornwall visiting the Eden Project and the Lost (now Found) Gardens of Heligan. We also managed to pack in a lot of other Cornish treats; visiting Pete and Kate in Launceston, Truro cathedral, the fishing villages of Gorran Haven and Megavissey, the Tate Gallery in St Ives, Lands End (should that be World's End given it's tacky, you-must-be-entertained-fed-and-watered-theme-park-with-souvenirs nature) and then on our return journey, Exeter and its extraodinary cathedral. All this, a birthday present from Diana.

As stated before - you know when you're ill - you get to go on more holidays. Live in the present.

I could write 'loads of stuff' about these five days - and I can't promise that I won't - but I must begin with a revivifying experience on the long journey to our holiday B&B just outside St Austell. Diana was driving and I had fallen asleep. This is not an unusual state of affairs. Diana is now used to me slumbering in her company; on the sofa watching tv, in the comfortable chair in the kitchen while she is cooking, in a noisy bar chatting with friends or family....... so it is understandable that she would simply let me drift off, head lolling forward like a discarded marionette as we motored down the M5 into what we already knew was likely to be a few days of very dodgy weather.

I began to stir when the pattern of the engine noise changed as we pulled off the road into the motorway services. Diana negotiated an unending series of turns and manoeuvres as I returned to consciousness. This was one of those areas that has to be approached by a roundabout above the motorway. The sign read, Bridgwater Services. 

We avoided the hazard of confused people crossing the road in front of us and entered a concrete hangover from the late 60s or early 70s. It was a mini multi-storey car park with just two floors. It was dark, oppressive, low-ceilinged with parking bays just wide enough to accommodate Saxon chariots. It looked as though the builders had become so depressed by their efforts that they had walked away before completing the usual number of storeys. We found a space on the first, and top, floor and descended a dark, smelly stairwell to find ourselves having to cross the very hazards on which we had previously threatened to mow down other, now fellow, pedestrians.

My mood had been as grey and bleak as the experience but then something began to change. This was so awful, it was good! I was in a time warp and there is something wonderful about a discovery left over from a previous age, however naff, however ancient. By the time we had negotiated our exit I was cheerful and energised. Try this pick-me-up yourself, the next time you are down that way.

Children of course are good at living in the present and I'll admit to having already identified some early indications of the, illness-accelerated, onset of my 'second childhood'. Some might (if, of an uncharitable disposition) say my dependence on Diana for the completion of simple tasks, like tying my shoelaces, has been in evidence for a while but you should know that, for the second time in two years, I have been invited by a respected national institution to indulge in the practice of smearing my own faeces.

Now, I'm not saying that I can recall enjoying this activity as an infant but Freud and co. would have us believe that it's not unusual and part of an early stage of psychosexual development. So, when you reach the age of 60 years and enter the NHS bowel cancer screening programme, be aware that you are being indirectly invited to get in touch with your inner child.

I'll spare you the details of the procedure but I look forward to logging other instances of my innocence revisited.

Btw - I got an 'all-clear' from the screening programme. Live in the present.

A new perspective.

Some 10 days ago, Di and I visited her sister Liz at her home in Northamptonshire. On this occasion we took the opportunity while in a county renowned for its attractive villages to explore the church at Brixworth. My 'Betjeman's Best British Churches' had already informed me that Brixworth is 'one of the most important buildings in England', so I was looking forward to seeing it. 

The experience was one of great interest but also more than a little disconcerting because the church was so different to anything I had seen before. I like churches. I often take the trouble to enter them when travelling and have done so ever since my first forays as a child, on bike and in car, into the Norfolk countryside; a county that boasts its own share of impressive, ecclesiastical architecture.

I thought I had a reasonable grasp of  church architectural styles and the way they help you decode the narrative of a building's history and heritage. But Brixworth's Saxon origins, its use of Roman materials and liturgical traditions, overturned a lot of these notions and left me struggling to understand how my story now needed amending.

I walked through and around the building and picked up a leaflet full of information that required more time than I had at my disposal for we were hungry, the day was cold and the siren song of the village pub meal, increasingly attractive. I bought a couple of booklets in the church and wrenched my velcro-desire to understand away from the place.

A few days later we were back at the Cancer Centre at QEH to get feedback on my latest (end of the second three cycles) CT scan. We had a story in our heads before we met the oncologist as to what course this meeting would take. The first scan had shown shrinkage of the tumours and in some cases rendered them too small to be detectable. With the continuing commitment to monitoring the nutritional quality of my diet, our 'silver bullet', this second-period scan would show further shrinkage. We had begun to allow ourselves to think about asking whether it would be possible to come off the drugs for a period of time or at least reduce the dosage and thereby the tiresome and sometimes painful side effects.

It didn't work out like that.

The radiologist's report indicated general stability with some minor growth in a couple of nodules. Our oncologist insisted that, I needn't worry, that there was no question at this stage of my being taken off the current drug because of a decline in its efficacy. We were reassured that this was the usual pattern, that the first scan would show shrinkage and the second stability, that the growth may be explained by the scan taking a section through a wider part of the nodules, that most patients only remain on my drug for a year, that there were other drugs available, that there was nothing that need cause undue concern.

This was like the Chairman of the Football Club Board giving reassurances that the manager's job was safe. We had no idea that the team's results could be viewed as poor.

After leaving the consulting room we struggled to make sense of what had been said. To put it simply; we were in shock. The narrative we had in mind had been overturned and we probed at our recall of the consultant's words again and again in an attempt to decode them.

I have read and re-read the booklets on Brixworth church; its story and the way it exemplifies the Saxon style of Romanitas, replicating the Christian architecture of the mother church in Rome. I have inched towards a new understanding of a long history.

Something of the same process has happened in coming to terms with the news about the CT scan. It just takes time to get things into perspective, a new perspective.

Life, the universe and everything.

Time to take stock.

It is now almost exactly a year to the day since I received the news of my diagnosis from the urology surgeon at QEH. I was told in a direct manner that I not only had kidney cancer but that it had spread to the lungs. The prognosis, based on statistics that take the mean survival rates as 'the measure of central tendency', gave me just over two years of life expectancy.

Such a moment changes you - 'but how, exactly?' - I hear you ask.

I'm not ducking the question but first I have to make mention of the fact that it soon became clear I was faced with a 'double whammy'. As it transpired, I not only had advanced kidney cancer, I also had degeneration of vertebrae of the lower spinal column caused by scoliotic curvature which in turn was resulting in serious 'mechanical' and 'neurological' pain - perhaps a 'triple whammy' would be more accurate.

I think that it has taken a year for me to make sense of this, to disentangle these conditions, understand and begin to accept how such an avalanche of misfortune could occur.

The first thing I must now acknowledge is this - if  I hadn't had the back/leg issue I might well be dead by now.

Without a reason to give me an MRI scan, it is almost certain that the kidney tumour would have continued to grow and the cancer to spread. By the time other symptoms had raised the alarm, I might well have been beyond the reach of the drugs that I now take and which have already had some success in shrinking the metastatic nodules in the lungs. (Btw, I have my second end-of-three-cycles scan next week - I hope for a continuation of the same progress).

So, I have two very separate conditions, with separate symptoms requiring separate (but interrelated?) treatments. I may have done some disentangling but I am still unsure as to what condition I should ascribe some of my difficulties.

Take walking for example. I need to, have to, walk for the exercise but it causes me problems with my back after a couple of miles and if I am walking uphill I experience almost immediate difficulty with breathing and exertion of my leg muscles. Is this down to my back and the drugs I take to alleviate the condition or the toxicity of the cancer drugs or some combination thereof? Who knows? Not me and from my conversations with medics (including a recent appointment with a doctor at the QEH's pain management clinic) not them either.

I sense that your eyelids are growing heavy - keep going.

So, how has the knowledge of my illnesses changed me? I hear you ask - a second time - but now with less enthusiasm.........

In many and varied ways, I am sure (I never promised original insight!) and perhaps some have become apparent to you if you have read my posts over the last eleven months (and not twelve, because it took me a while to absorb the initial impact before I could start to write this blog). However, it seems to me that the most profound area of change relates to my adjustment to the nature of what life is.

For virtually all of my time on the planet, B.C., there was something that I can only describe, and did so even back then, as 'unreal' about 'existence'. There was some self-consciousness (or was it the lack of it?) that insulated me from the fragility and time-limited, accidental, nature of life. I always knew that I could die but I knew it 'intellectually'. The only moments of 'reality' were  those when I had a visceral fear of death, such as standing on a cliff edge and looking down or when I lost someone who was close to me, such as my father or my mother. The break-up of my first marriage too, that was real. But the 'insulation' soon regrew over the wound, like a cicatrix, to 'protect' me. I stepped back from the brink, back behind the safety railing.

But when you are told you have advanced kidney cancer and there is no cure but only palliative care - there is no longer a safety barrier. 'Life is unfair', I whined. Yes, I now understand with clarity, that life is unfair - get over it. As Christopher Hitchens said (and I paraphrase) - the universe is profoundly uninterested in fairness, in whether I live or die.

Is this a penetrating or prosaic discovery - you decide - but, if interested, I'm sure that there is more from whence this came............

Things to do before you die.

Drive to the Torridon mountains in Wester Ross (as we have done - this is a live, streaming, blog) and arrive, preferably on a sunny day (as we did) in the ribbon settlement of Torridon village at the eastern end of Upper Loch Torridon. Perhaps you might pause here to enjoy some refreshment in the solitary cafe and chat (as we did) to the English emigree who moved to the village a couple of years ago. Then drive on down the road alongside the loch.  You will see that it is signposted 'no through road' but put aside your reservations about 'dead ends' and drive the big dipper of a road for another few miles. You can admire the panoramic vista across the loch of dramatic snow-capped mountains. You could drop down (as we did) to Inveralligin and explore the enviable beauty of the village there but you should also drive on the extra miles, over another hill, raggedly clothed in peatbog, that will take you down, eventually, into Lower Diabaig.

Here you can park and walk out onto the harbour wall and look up and around - the full 360 degrees. It is as though you are in an amphitheatre, or possibly the centre of the bowl or cone of some extinct, now flooded, volcano.

Try to organise it so that you all travel on different (sunny?) days otherwise you will miss out on the eerie sense of isolation, the feeling that you are alone in a beautiful universe and in all truth; very, very small.

No refunds given.

If my recall is accurate, Margaret Mead, the renowned American anthropologist, who studied and wrote books about communities in the South Pacific, was once asked when she thought men were happiest. She considered this profoundly important question for a time, then answered, 'when they are preparing for the hunt'.

This may explain why, my brother and I, newly inducted into the arts of fishing from the beach, sought to replenish (in my case 'plenish') our freezers with mackerel, bass, codling, ray and any other pescatorial booty that might come our way. Thanks to Kate granting us access to her wonderfully-secluded family 'retreat', we were able to sally forth for a few days into beautiful Dorset in pursuit of our prey.

Two days later we had spent something like twelve hours on the steep shingle beaches of the Jurassic coast. (Please put aside now any temptation to make mention of  how appropriate this might be for a couple of dinosaurs......) By the time we packed away our thoroughly-drenched gear on Tuesday evening, the English Channel had yielded one small, strange fish called a 'father lasher' (Myoxocephalus scorpius) and a writhing, slimy elver.

The only mackerel we saw was the one we bought for bait to supplement the ragworm in which we had invested so heavily. Even that fish disappeared when a patrolling herring gull swooped and carried it away while I was distracted by the waves momentarily threatening to o'ertop my wellingtons.

There is no question; the setting was magnificent, when you could see the biscuit-coloured cliff for the rain; the sea was majestic, though it consumed considerable amounts of equipment that we insisted on throwing into it in the forlorn hope that the sea might let us have it back again; the beach was impressive in its dramatic, pebbly banking though it made climbing and descent an exhausting effort  - and the weather was - just awful.

And yet............... we can't wait for the next expedition. We had a great time. We eagerly anticipate fresh sight of the sea, the promise of (fishy) food, the prospect of exploring, encountering that primitive, DNA-embedded, residual instinct established in the Era of Evolutionary Adaptation - the thrill of the hunt.

................ and this trip with my brother was further evidence of my 'rehabilitation', my ability to survive without the ministrations of Diana . At this rate those of you who are still reading this will be 'wanting your money back'.

Not much chance of that, I'm afraid.

How green is my tea leaf?

Some more good news for 2012.

Last Friday, I had an ophthalmology appointment with the consultant at QEH. Of the three areas I attend, ophthalmology and oncology at QEH, orthopaedics at ROH, the most hard-pressed is usually the first. My appointments for the eye clinic are often re-scheduled and on arrival the wait times are longer, the waiting areas more crowded - but the staff are great.

In particular, I can only sit, chin-forward into the head-stablising 'iron mask' in an eye-drop induced miasma of admiration, while the consultant manages the constant flow of demands made of her. She tries, very hard, to focus on my condition but others need her input and she is invariably accommodating.

Anyway, enough of this heroine-worship; she investigated my eye for the incipient retinal occlusion (see earlier post; October 23rd 2011) and pronounced it 'recovered'. Her thinking is that the haemorrhage was the result of hypertension linked to the kidney tumour and its removal helped remedy that problem - but she could not be certain. Obviously, this is another reason for close monitoring of my blood pressure.

Di believes that the 'secret ingredient' in this latest bit of good news has to do with my, with our, dairy-free, vegan-when-possible diet with its emphasis on green tea, 'nutriceuticals', unprocessed foodstuffs, organic-when-affordable/available vegetables and low-alcohol intake.

The medics are more sceptical. When time allows they are polite but put faith in medication and surgical procedure. We wouldn't discount these inputs (!) but have need of something additional that gives us a measure of control.

I certainly have good reason, of late, to thank drug therapy for improvements in managing the tiresome (for you and myself!) condition with the back and leg. We took Joe back to Durham yesterday and I drove for more than half the 7 hour return journey. That represents a huge improvement and must I think, be associated with the recent additions (see 9th April 2012) to the drug regime - much as I might like to put it down to the green blood coursing through my veins!

P.S. The bit above, about the admiration I have for my eye consultant, puts me in mind of a story about an exercise that I used to set classes collectively sentenced to follow an eight week module with me on 'drug education'. One homework required the collection of a number of newspaper articles that featured drugs in whatever shape or form, legal or otherwise. The aim was for groups to make a collage which would lead to discussion and penetrating insights about media coverage of the subject. I scanned all articles when they resentfully made their way back to my classroom.

One of these was a small column about a young woman who had spotted a child struggling in a river and gone into save him or her. All very interesting but I couldn't make out the drug connection and asked the student to explain. A confused girl shrugged her shoulders and muttered something unintelligible. I really wasn't sure that I wanted to spend more time on this but quickly re-read the article. Again it was about a young woman, a drowning child, a rescue and celebration of a selfless act of bravery.

'I'm sorry', I said, now seriously intrigued, 'I still don't see what this has got to do with drugs'.

The pupil pushed the headline, that had become detached from the article, under my gaze; HEROINE SAVES CHILD IN RIVER DRAMA.

Geddit?

Ears and eyes.

When I was involved with the world of counselling one of the axioms I learned was, 'you listen with your eyes'. In my secondary school teaching this proposition was satisfyingly puzzling to students. I used to routinely set up the class to undertake an exercise that would demonstrate the truth of it. This was one of my more successful lessons.

Birding with Dave has taught me a new axiom - 'you see with your ears'. While I, as with our recent visit to the RSPB reserve at Middleton Lakes near Tamworth, tend to walk with my eyes forward scanning for birds (but also plants), Dave is tuning in aurally. He invariably hears and understands acoustic meaning before I do. He can distinguish different warbler song, a reed bunting call or a dunnock serenade. As a result his use of sight is then often directed and acute while mine is still engaged in generalised scanning.

On the other hand he isn't so good with his umbellifers.

A few days before this trip I received an email from Betty, the wife of Bob, who had been a teaching colleague of both Dave's and myself. Bob had retired a few years before me. I knew, from bumping into him at the QEH Cancer Centre, that he had prostate cancer that had metastasised to the spine and other areas. Her message told me that he had returned to hospital following further complications with his spine. The information was to the point; he would never walk again.

Yesterday, Di and I visited him and he took us through the events since our last meeting. His voice was strong in the telling but understandably emotional when pausing to confront his new reality. Betty and Bob are ordinary people facing adversity with extraordinary courage. The tears that fill our eyes are for all of us.

'Tuning in' can be both rewarding and painful.

The rare delights of Bringsty Common

Just back from my regular early morning walk over Bringsty Common - and still in recovery!

Joe's abed and Di has escaped back to Brum - something about a singing engagement at Symphony Hall. Apparently, she's part of the warm-up act for the CBSO's, Dream of Gerontius - nothing that couldn't have waited. I'm inclined to think that she simply wanted to get away from our male conversation - all clipped, morose and monosyllabic.

But seriously, if you want to introduce some cardio-vascular work into a morning stroll get a dog and come here to the Common. Better still borrow my dog, - that is, our dog - well, even 'our' dog is a tad presumptuous. You won't get much of a conversation out of Woody but he'll always be there, some 15 yards behind you, moving with the same head-down, doleful, hip-rolling gait.

You could then, of course, take the gentle or the head-on ascent of  Watership Down. If the latter, be aware that when you are struggling the most, the chiff-chaffs have this intensely irritating habit of laughing at you from hawthorn trees that line the path. They insistently giggle, if not monotously, then no better than di-otously. It's not as if they have the output of an avian string quartet!

As you climb, head-down and Woodylike, you can study the minute tunnel entrances of the local burrowing bees and admire the splashes of eponymous colour from the dog violets, which, the display board in the car park tells me, are the food plant of the rare, pearl-bordered and heath fritillaries.

If you are at all like me and accompanied by someone with greater lung and thigh capacity, you can  even pretend to find it important to stop from time to time and pompously intone, surreptiously-garnered, secondhand information.

All of which leads me to say that if anyone is to blame for this sudden arrival of blogging omnibuses look no further than Del and her recent expression of interest.

I'd give you her contact details but that might only serve to encourage a disproportionate act of  vengeance.

The want of time

Kate and Leon's (farm)house is on the edge of Bringsty Common near Bromyard in Herefordshire. Each morning, I'm the first out of bed to feed the dog, the chickens and to release the geese from their shed. Not that the geese are appreciative. They always impatiently and raucously insist that I attend to them first and then when I do, they arrow their extended necks first upright, then head down and issue menacing hisses and squawks at me. I retreat to deal with the less aggressive bantams.

Then, because I'm here with Di and Joe who, vampire-like, loathe the rays of the rising sun, I decide to take the dog for a walk. This golden labrador, who answers to the name of Woody, when he can be bothered, is both very placid and lugubrious. As I head down the lane that leads to the common he lopes along behind me, never complaining and never much inclined to take an interest in our route. I head for the summit; a Watership Down sort-of-hill topped by a small copse of wind-sculpted trees. Hazel and Fiver have yet to arrive as I climb the steep approach, my thighs on fire from the exertion. When I pause, Woody pauses; he sees no need to overtake me. For his benefit, I pretend to look at the view, take deep breaths and move on.

At the top, I slump onto a seat thankfully gifted by the family of the former blacksmith and postmistress and admire the landscape with its undulating quilt of field and woodland. In the distance the outline of the Malvern Hills and its associated treelined ridges rise and fall as though pegged like dark sheets to an invisible clothesline in the sky.

Last night we had watched the BBC Horizon programme about modern methods of cancer treatment and the hope they offer particularly for people of my generation. If you saw it, my circumstances were similar to the woman who had advanced melanoma. Her condition was inoperable; only the new types of targeted drug therapy could offer more time.

Who, on this hill, would be indifferent to the want of time?

Thoroughfare toTupperware.

As I write I'm sitting on a comfortable sofa, warmed by a large log stove in Kate and Leon's place in deepest Herefordshire. Along with their part timber-framed farmhouse we are sitting their dog, Woody, a couple of unfriendly geese and a sizeable group of bantams.


I'll concede now that my strategy of leaving a lengthy gap between 'posts' in order to elicit a collective pleading from you lot, has failed. My only compensation has been a single request from Del that I make a further effort - because she at least is reading the blog.


I guess that the most significant development, of late and of a positive nature, has been my recent experience of travelling, beginning with a solo expedition to London. I had been to stay at Kathy's before - in the years B.C. I recall the view from the top-floor window of her terrace house in Greenwich of the London skyline; the glimpse of St Paul's, the Eye and from another window, Canary Wharf and the Millenium Dome. I'd thought these wonderful sights but knew that when she realised that long-harboured wish for a place on the river, the view would be even better.


But those plans went back to a time when John was still alive and more than 6 years had now passed since his loss to aggressive bowel cancer. We'd reconnected after a long gap in those early traumatic months. There had been many tears and occasional forays into our shared ancient history as fresh-faced, exuberant undergraduates in the late 1960s.


Then. when I was diagnosed she had visited Brum and drawing on her experience of a long journey into loss, she had some wise and calming words to offer.
 
But since her move to that riverside flat, I had been unsure about taking her up on the offer to visit. How would I cope with travelling on my own? Would she understand that, post-op and on-chemo, I am not as I was? So, when she offered to both pick me up from Euston and return me the following Monday, I was greatly and gratefully, relieved.


That journey from the station to Greenwich turned out to be more eventful than I would have wished. An accident a few days prior to our meeting had resulted in her use of a courtesy car sporting gadgets she had yet to master. On a beautiful spring morning we over-revved and hand-braked our way across the busy, bustling, thoroughfares of the city.


I had, of course, imagined the river aspect as described in numerous phone conversations but the reality when we reached the penthouse living space was simply stunning.


From the picture windows and the balcony beyond, the span in view was a cinemascopic 180 degrees of an expansive, tide-swollen, swirling, chocolate-grey, River Thames. To my right the Millenium Dome nestled amid the low-rise buildings like an outsize and unexploded, WW2 mine. Across the water the towers of Canary Wharf competed for my attention led by the tall, blinking, obelisk of One Canada Square. Ahead, on the opposite bank some considerable distance from the facing riverside apartments I could see the distinctive outline of the Gherkin and the Eye; to my left Wren's Naval College, the masts of the Cutty Sark and the sky-piercing Shard.


The lazy, endlessly shifting, riverscape is so different to the buzzing world at ground level with its narrow Georgian streets thronging with excited young tourists and local residents.


The weekend of walks and words went well. I feel I can make further excursions into  the old world where I once moved so unthinkingly.


But first there was another part of my new world with which to contend; the consulting room of my oncologist at the QEH Cancer Centre. At the end of my two-week drug-free period I returned from London for the news on how I was progressing. The young female doctor said I was doing very well to have reached this point, the end of five cycles and still on the maximum dosage of the powerful anti-cancer drugs. Apparently it is elderly, slightly-built women who suffer most from side effects and have to either reduce their dosage or come off the medication altogether. 


Which is a nice way of saying that the toxicity is diluted for fatties like me.


She took some interest in my new regime of analgesics following the visit to the palliative care doctor (see last post) and when I reported that they had made little difference after an encouraging start, she prescribed additional medication. 


I am now taking so many pills each day that Boots have submitted a planning application to open a branch next door to our house, I need special computer software in order to co-ordinate my drug regime and a large set of tupperware boxes to serve as containers.


This is the reason for our retreat to a Herefordshire idyll; our Moseley friends and neighbours are unhappy about the proposed pharmacy but more especially, they are distraught about a possible renaissance in 1960s Tupperware parties. 

Growing pains.

There is something very elusive about  my relationship to pain. For a start the four-letter word itself seems woefully inadequate when confronted with the need to explain myself. If the Inuit have at least 50 words for snow surely we could better manage to differentiate between the qualities of the negative experience that is pain. Wikipedia tells me that, "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage". This may be useful but it doesn't add to the lexicon at my disposal.

All of which is a preamble to admitting that I wasn't very good yesterday when the doctor in the Palliative Care Clinic at the QEH Cancer Centre went through his battery of questions designed to give him the clearest possible outline within the least amount of time. To be honest I was more than a little abstruse when it came to explaining the nature of my experience.

I had been given this appointment because a month or so earlier at the end-of-cycle consultation with my oncologist I had talked about the difficulties with pain management in my back and leg. By this time I already had a referral to the QEH pain clinic arranged by my orthopaedic consultant but it was for three months hence. 'Orthopaedic time' is elongated and interminable whereas 'cancer time' is, by comparison, smart and snappy. So my oncologist offered to speak to the Cancer Centre's pain management doctor. He was making no promises but within days an appointment had been made.

At least this was the first occasion when a doctor was interested in the whole experience - the problems resulting from my back as well as the cancer. Usually the doctors are wary of demarcation disputes and stick closely to their specialism. Encouraged, I made an unsuccessful attempt to talk about the pain resulting from different conditions 'overlapping' and 'interacting' but had to retreat under the baffled scrutiny to which he subjected me; and it didn't help that he had two registrars observing our exchange.

My concern is that I failed to give a good account of the situation I face; the different centres, shades, intensities and otherness of 'pain'.

Now at least you have some sense of how the doctor felt.

I have to accept that I have moved well beyond the point where pain is viewed as a symptom that assists diagnosis and treatment. The diagnoses, such as they are, particularly in relation to my back, have been made.  The die is cast. Pain is now something to be treated as a discrete entity. It is separate from understanding and remedying the condition. It is now inevitable and long term.

The outcome was that I would supplement my existing cocktail of drugs by taking two paracetamol, four times a day for the next month - and monitor my capacity for physical exertion.

So, stuffed with paracetamol, I spent the afternoon sawing and chopping a modest amount of wood and then collecting some more from my store on the allotment. I took my time; approached each separate task in a measured way and asked for help when I had need of it. On this, the evening of the last drug day of my 5th cycle, I feel 'cream crackered'.

So, at least that is my baseline established. I'll see how it goes over the next month.

A simple desultory philippic

Yesterday I saw my oncologist. He wanted to know about the cystoscopy, once I'd reminded him that it had happened. He was happy to learn that the result was positive but as he'd yet to receive any report - he'd only got my word for it.

He commented on the fact that my hair (beard, eyebrows, nasal, ponytail) was turning white. 'That's the effect of the drugs.' Diana wanted to know how he explained her condition....

But, I jest. To be honest I came away more than a little chastened. He spoke of the fact that even if the nodules were shrunk to a point where they were no longer detectable, I would still continue with the 'chemo'. He said that they would re-appear and would in any case ultimately prove resistant to the toxicity of the drugs. 'At that point we will have to try something else' - but he didn't sound very optimistic.

My head knows this condition isn't curable but my head isn't always fully engaged.

We returned home and updated the 'hired help', my brother John. Invited to spend a few days with us, he has been working through a list of DIY jobs including what will be, to my knowledge, the only listed wood store in the UK. (He's very thorough).

As a 'thank you' I took him out for a meal last night. We went to a new Asian restaurant, Mughal e Azam on the Stratford Road in Sparkhill. The building is a W. H. Bidlake congregational church dating from the 1930s. It is listed grade II. I can recommend it both for the food and the experience.

It is an example of a fine building that has found a new purpose. Decorations suspended from walls and ceilings put me in mind of the Hagia Sophia in Istanbul. The aim in both buildings is to demonstrate that the premises are under new management but that there is still pride in the drama and beauty of the original design.

This line of argument may not find favour with the small congregation that chose to sell up and move on.

But then, 'all change is difficult'.

oh-my-goshscopy!

On Monday evening we were at the Kitchen Garden Cafe in Kings Heath, celebrating Jenny's 60th birthday. It was great to see a lot of friends some of whom have not been part of the regular round of walking, visiting and tea-quaffing - and others who have. This was an extremely potent mix of hugging and warmth from both men and women. But it's the women who make sustained and unselfconscious contact through embracing and the holding of hands. At times like these it feels as though I have attained some special status - that I have been invited into a female world that for men usually hovers somewhere nearby - we sense its presence but it exists in a different dimension.

But don't be misled - it isn't always like this.

I've noticed that as 'cystoscopy day' approached a significant number of women couldn't help themselves - they relished, in a muted but nevertheless, perceptible manner a degree of satisfaction that 'the boot is on the other foot.' I knew what they'd like to say - 'Now, we'll see how you like it when you're subjected to an invasive procedure' or 'What a fuss over an internal examination; during my pregnancy I had, goodness knows how many doctors.............'

What I hadn't bargained for was the number of women involved in administering this procedure at the Queen Elizabeth Hospital. I saw one man throughout my time in the endoscopy department. He was the consultant who having shaken my hand, disappeared from sight leaving me in the hands, literally, of four women, one doctor and three nurses. I resolved to be 'cool'; even while lying prone.

Having rearranged my clothing a nurse placed large paper squares over my exposed body. She then swiftly pulled the centre of one square into a mini peak and tore it to leave a strategically-positioned opening . Like an Inuit over an ice-hole the doctor then went fishing.

I'd expected them to be clinical and 'matter of fact' but I'd also been told in the prep room that it would be 'a very thin' tube that would be inserted into my 'water pipe'. ('Urethra' I'd corrected her - we're all professionals here.)

The instrument was considerably more robust than that which I'd imagined; a shiny black object tapering to a mobile, flexible tube with multi-coloured eye at its tip.

There was certainly no 'foreplay'. I'll spare you the details but suffice to say I was soon watching an image of the coloured tube that is my urethra. I had assumed that the screen above the operating table might have been used for something entertaining like a re-run of the Swansea - Norwich match from the weekend. Nobody looked like they were being entertained though I was making a brave attempt at it. 'Is that filmy tissue in the picture normal?', I asked in what I hoped was a nonchalant voice.

The young doctor commented on the narrowness of my urethra and tried to make her request that someone find the consultant sound perfectly normal. Then after much tentative manipulation and with the help of another nurse she finally managed to make progress and we were looking at the creased walls of my bladder. She cancelled the request to reach the consultant, went on a Cook's tour and concluded that all was well.

The alien one-eyed worm was swiftly removed. Boy, that felt a better. I didn't hang about. With my hospital trousers rapidly hitched up, she detained me long enough to say that there was nothing she could see that was of any concern. If I had further problems I should contact my G.P.

In the recovery bay I exchanged some effortless banter with another male patient before the nurse discharged me with the injunction that I drink lots of water for the following 24 hours. Some hours later my bladder is calming down.

A couple of days earlier the results of my upper spine scan came in. On the phone, the consultant said they were perfectly normal.

So far, in 2012, things have gone pretty well; shrinking nodules, a functioning cervicothoracic spine and a urethra that does undoubtedly lead, eventually, to a bladder. I wonder how many other parts of me can be confirmed as normal?

As for the female cystoscopy team, I'm not saying they enjoy their work exactly but I don't think I would want to be in the canteen when they were sharing some 'down time'.

My magnetic personality

Last Thursday, seated in the 'ante-room' to the Royal Orthopaedic Hospital MRI scanner, the radiographer was going through the usual checklist of questions designed to ensure that a part of me didn't become overly-attracted to the super-powerful magnet I was about to enter. I established with her that the shrapnel the military medics had been unable to remove in my left leg would be well outside the neck and chest (cervicothoracic) region under investigation. She made a monotone response to indicate she had heard this one many times before but this only served to strengthen my resolve to come up with an original line and make her, or a colleague, chuckle in appreciation.

Next, I thought it best to establish that this new ROH scanner (one of many that I've visited in the West Midlands!) was as I remembered, 'doughnut-shaped' -and reassuringly open on both sides. Her brow furrowed and she told me that though it was more capacious than the one in which I'd had my claustrophobic experience (see Thursday 16th June 2011 post) it was still of the 'tunnel' variety and that I would need to be taken fully into the scanner. This instantaneously squashed all ambition to amuse her. I could already sense a warm fluid rising through my trunk and limbs and the automatic intake of deeper breaths.

We agreed that I'd have a go.

Inside the tunnel I was focused on only one thing, the small mirror locked into place above my head and set at a  forty-five degree angle so that I could see into the airy, life-enhancing and spacious room I had so recently entered. I had been assured that the procedure would take only fifteen-twenty minutes. I wasn't told, however, that, once inside the tunnel, you enter a 4th dimensional time-warp. This was the longest twenty minutes of my short life. Only the blurred sense of people in hospital uniforms pursuing their normal lives beyond the viewing window and my enhanced yogic breathing kept me from the hazardous cliff edge of panic. The headphones gurgled some baroque music, intermittently obliterated by the thunderous roar of the scanner that gave every impression of trying and failing, to reach a speed that would enable it to take off.

But, I hear you ask; 'How did you get to be in yet another scanner? Surely every part of your body is already, intimately known to modern science?'

Well, let me take you back to the last post - the one you, unkindly, thought would never end . If you recall I had mentioned then that my next appointment, in late January,  was to be with the consultant at the ROH. I expressed the opinion then that I was so fed up with the neurological and mechanical discomfort in my back and leg that I was prepared to request a surgical procedure on my poor scoliotic spinal column.

The surgeon had other ideas.

I imagine that medics are taught that there are at least three sources of information that might help them diagnose a patient's condition; physical examination, technology-based testing (such as blood and urine samples, all manner of scans and 'oscopys') and finally, 'verbal feedback'. However, asking me questions about my back pain is something in which my consultant isn't particularly interested. He is a 'scan man'. He has looked at them before I enter his office and so knows what outcome he wants - and assisted by a personable, authoritative style he usually gets it.

Having established that the epidural (see 23rd November 2011) had been unsuccessful he proceeded to dissuade me from asking for major surgery by showing me the MRI scan of another patient whose spine was liberally studded with ghostly pins. The man's back had been unable to take the strain of linking these pinned vertebrae to the first 'good' vertebra in the lumbar region causing one of them to fracture. The man was now bent double when he walked.

'And your point is?' I wanted to ask.

Not that I was looking for major surgery but I did have a small speech prepared much of which had already been rendered pointless by his conclusion that there was nothing more he could do for me. He did offer to refer me to the pain clinic at the QEH and I hope for an early appointment but he otherwise intended to discharge me from his list.

Then I remembered part of the 'speech'. I wanted him to know that I had also experienced a change in the way I used my left arm (and not only my leg). I relayed some of the symptoms which threw him into some consternation as he had already intoned summary and final letters into his dictaphone.

'Have we scanned your upper back?'

We established that 'we' hadn't. So that's how I came to be in the MRI room, renewing my relationship with the guardians of the scanner. There is obviously a powerful attraction there.

Oscopy....shmoscopy.

Oscopy....shmoscopy..... I know an imminent medical indignity when I see one.

Just before Christmas I returned from a (very emotional) night out at the Birmingham Town Hall with some friends. We had been to a reading of  'A Christmas Carol' and were informed that Dickens himself had given the first public reading of his, now-famous, novel in the very same place more than 150 years earlier.

While at my friends' house I made a discovery when visiting 'the bathroom' - a pinkish hue to my pee - clinicians would term it haematuria.

After (only a little) procrastination this resulted in an email to my specialist nurse at the Queen Elizabeth Hospital, even though there was and has been, no recurrence. Time went by and I thought/hoped my email had disappeared into the cybervoid of the seasonal period.

Then a few days ago a letter arrived informing me that an appointment had been made for me to attend the urology clinic for an endoscopy in mid-February. Endoscopy, cystoscopy - let's be clear - this is all about pushing a lens into and up a particularly sensitive part of my anatomy. It's not that I'm against these 'invasive' procedures, it's just that I think they should be reserved for other people.

I've written to the specialist nurse making a generous offer. If she has other, more urgent, patients waiting for an appointment then I am willing to give up my place in the queue.

Well, it's worth a try.

Another letter arrived today. This was the copy of the radiologist's report from my last CT scan. As I promised to share the detail the following is a lightly-edited extract.
Previously documented lung nodules have either resolved or reduced in size: a 3mm nodule in the apical segment of the right lower lobe close to the mediastinum on the previous study is barely apparent; a nodule in the right middle lobe measuring 4mm now measures 2mm.

A nodule in the right lower lobe measures 5mm and has reduced from 8mm previously. More posteriorly in the right lower lobe the nodule has reduced from 13mm to 6mm. Other smaller nodules are no longer apparent, no new focal abnormality is seen in the lungs or mediastinum.

So, although there are one or two queries relating to a 'collection' outside the lungs and other matters, I'm sure you'll agree that this amounts to good news. It was puzzling to read in the conclusion that 'appearances are stable' when the body of the text suggests that it is so much better than that - but I guess this may fall within the range of what some have unfairly termed, my tendency to pedantry. 

Next appointment (do try to stay awake!) is with the consultant at the Royal Orthopaedic Hospital next week. Forget what I wrote earlier, the continuing discomfort is such that I'm going to ask him to insert a steel rod into the scoliotic lumbar region of my spine and attach my poor degenerating vertebrae to it.

Honey, I shrank (sic) the nodules.

We have just returned from the Queen Elizabeth Hospital and our consultation with the oncologist following the recent CT scan. The news is good. The scan gives evidence that the nodules - not sure of the precise number but about 5 or 6 - have shrunk. I have asked for a copy of the radiologist's report but it would appear that shrinkage is of the order of 30 - 60%. This puts me in the 40% bracket of those who have shrinkage, rather than the 40% who have no growth and the 20% for whom nodule growth continues.

So, I'm in the right group and will go forward to the next drug cycle that starts tomorrow. I'm pleased even though it probably will mean repeating the experience of plantar fasciitis - inflammation of the soles of the feet which makes walking (and standing) very painful after a short period. The approach however is to treat the side effect rather than reduce the dosage while there are evident clinical benefits to taking the drugs. If I can tolerate something like 6 cycles then I think they look to reduce the dosage.

The treatment for plantar fasciitis includes the use of Udderlysmooth - a cream developed for the inflamed udders and teats of dairy herds. Apparently, one of the constituents is urea - though I'm not sure who or what animal makes that particular contribution. I've just ordered some so I'll let you know as and when it is revealed.

If my mood is less than euphoric it is partly because the 'good news' was delivered in a 'tone' that was flat and inconsistent with the content, partly because of apprehension about the drug side effects but mostly because the consultant revisited the bald, stark and scary statistics about my condition.

For some reason he thought that we were a partnership that had opted not-to-know about the prognoses. When we assured him that this was not the case he furnished us with some dispiriting 'median survival periods' for those on Sunitinib.

But hey, I'm not the median man! I'm the guy with shrunken nodules and that's something joyous I could never have predicted saying, just one short year ago!!

I'm back - again.

It has been a long time I know - but I'm back and I'll try to explain..........


A part of the explanation has to do with the events of mid-December. I wrote a blog about it at the time entitled, 'Dark days, 'crab years.'' and posted it shortly thereafter. I decided to take it down a day or so later having reconsidered the  appropriateness of some of the material. I am re-posting a part of it (see below) and you may well be able to imagine something of that which I have excised.


Some of you will know that the 'crab years' began for us not with the diagnosis of my condition last May, but nearly five years earlier when Diana was told that she had breast cancer. So, a few days ago, after her 'final' follow-up mammogram of the week before, she attended her 'signing-off' consultation at the Women's Hospital. Every check-up since her mastectomy has resulted in an 'all clear'; this one did not. She was told that the mammogram had revealed a possible DCSI ( Ductal Carcinoma In Situ). This means she may have a cancerous condition which might also require a lumpectomy with radiotherapy follow-up. So there will be another biopsy and given previous experience, the prospect of further treatment.

There are times when I, when we, ask, 'Why us?' Everyone in our or a similar position must ask the same question. There are science-based answers concerning factors with which particular cancers are linked. An obvious one is smoking and lung cancer but the linkage is much less clear with other conditions. Anyway, I'm not sure that the 'science answer' is what I and perhaps others, are ultimately seeking. The question is more of a desperate, confused and uncomprehending plea for someone to make sense out of the chaos. Even a consultant surgeon can't offer the answer to that. In the absence of a belief in God we must find our own sense - though I know that we are not alone in this.

A part of the answer has sometimes been 'Why not us?' We are no more 'special' or 'insulated' from personal crisis than anyone else. Another part has to do with the learning that comes from confronting circumstances such as these, that there is something precious in discovering the uncertainty, the fragility, the transient nature of being alive.

I try to keep such thoughts in mind.


The date for the follow-up consultation after the biopsies (not biopsy, as it transpired) was the 28th December. This meant that we had to contain our anxiety through a good portion of the seasonal events. It helped of course that we had grandchildren-sized distractions but Diana had, nether the less, plenty of time to prepare herself for the worst. 


We went to the Women's Hospital together and sat in the very same places, in the same room that we had sat in five years earlier when the consultant had begun with the words, 'Unfortunately, it's not good news...........'. I lost the rest of what he had to say in a miasma of slow-motion shock and confusion. This time, as before, another consultant came straight to the point. I can't recall the words, I was too busy preparing myself for listening, for the portentous moment. Through the fog, I became aware of the smile in Diana's words and the delight in the squeeze she was transmitting through her hand to my hand. She was clear. The biopsies revealed nothing more than 'normal calcification' occurring in a proportion of women over the age of 50.


Most of you know all this by now - but not all. It was a great end to a difficult year.


A day later we were back at the QEH for my end-of-3rd-cycle CT scan. This was the scan that should tell the oncologist what impact the 'chemo-type' drugs have been having. The final few days of the 3rd drug cycle had been difficult because of the onset of 'sore feet syndrome'. This had made walking, for anything but a short distance, too painful. 


The results of the scan are due in a couple of days. I'm hoping for good news and know that a lot of people are with me - including, I'm sure, the un-named person, who called me on the phone the other day to enquire after my health.


"Rod," he said. "How are you?"
"I'm ok," I replied before adding, "but I have been better."
"Look," he advised "you've got to stay positive. Things could be worse...."
"I'm sure you're right.'
"Of course things could be worse - look, for a start - it could have been me!"


That triggered the best, full-throated laugh that I have enjoyed for a very long time! You would have to know the person.......