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.