Into ever-widening orbit drawn

A number of events have taken or will take place over the last few, and coming, days - and like any good continuity announcer, I continue to search for the links...................

Two days ago, I was in a packed St Francis chaplaincy on the University of Birmingham campus attending a memorial service for Tony, a long-serving member of the teaching staff. I didn't know Tony well but have been very fond of Alison, his wife, ever since she came to the rescue at the time Diana was diagnosed with breast cancer in 2005. Alison, a woman with more than a little of the no-nonsense Scot about her, helped both of us in many ways but particularly Diana with organising her work commitments in advance of an operation and subsequent time on sick-leave.

Tony died of complications arising from an operation linked to his bowel cancer. The funeral had been held in the Highland town of Boat of Garten near Aviemore, the family home since their respective retirements a few years ago. The memorial service was an opportunity, particularly for those unable to travel to Scotland, to pay their respects and take part in a celebration of remembrance.

I could not of course, though it feels shameful to admit the fact, stop myself from musing on the question of what might be said about me in similar circumstances. Would it be possible perhaps for me to offer some prompts for those reckless enough to address a future, thinly-populated audience?

One suggestion would, as was the case with Tony, centre on the importance of family. I'm really not sure what my children (and grandchildren) will say about me but around the same time as the memorial service I had received a late-Christmas, long-distance parcel from my son, Stephen, who, as most of you know, lives in the States. The parcel turned out to be a photo 'trans-imaged' to a large, frameless canvas. The photo had ben taken by Amichai on the dunes at Walberswick in Suffolk during our time there in Christmas week. It, the photo, is populated by my three grown-up children and two grandchildren.

The gift is a joy and I have already looked intently at it on many occasions. I am moved by the warmth within the grouping and if my muse hadn't deserted me (without so much as a 'goodbye', much less an explanatory note) I might have been moved to write something poetic - so, prose will have to do. How did this happen - that five healthy, life-loving, big-hearted young people were so indissolubly connected to me by both nature and nurture?

By the way, that's a rhetorical question.

Next Monday is my father's birthday. Had he lived he would have been 98 years old. He died 35 years ago, my age come the month of May this year. Of the five in the photo he had time to meet just Claire and Stephen. He too would be proud - in his own, low-key, hard-to-fathom manner.

A few short sentences ago you heaved a sigh of relief when I wrote that I had been unable to find poetic expression for my feelings about the family photo. You sighed too soon. Here is one I wrote earlier, in the year 2000. It features Joe, who will be 21 years old in a few days, my father - and me. I'll leave you to join the dots.................

                                                  Satellites

                                    Tonight, as we with separate purpose walked

                                    you, a perfect 8, playing by my side

                                    and into ever-widening orbit drawn

                                    by worlds new-grown inside your head

- and I, with my father once more;

he, a man, so sombre-proud

proceeding with lunar-heavy tread

straight and undeflected, as though

upon some path, we’ve walked before.

I saw my son, knew him for me

but still cannot be certain

across long light years, whether he,

imprisoned now in fading photographs

and of such gravity,

looked down and smiled,

and saw himself in me.

Finally, we had a consultation at the QEH Cancer Centre last Thursday. I am cleared to go forward to the next round of oral chemotherapy, the 13th. The all-important CT scan will not be administered for another four weeks or so. I'll keep you informed.

There and back again.

Lunchtime, the Sunday before Christmas, 2012. That would make it 23rd December if my maths is correct.

We are on Southwold beach in north Suffolk and though it isn't raining the wind-chill means that we are in 'survival mode' - thermals are vital apparel. My brother, 'John-the-elder', and myself are returned to the hunt, only this time we have brought a 'youngling' with us in order that we might induct him into the tribal skills of fishing from the beach. The 'youngling', is my son, named 'Joe-Bilbo' and he is puppy-eager to begin.

We counsel patience. There are arcane signs in this bleak and to many, featureless landscape. We must first take time to read them. Is the tide on the ebb or flow? What will happen with the weather ('John-the-elder' has much to say on this)? Where are the fish most likely to be found given that there are small breakers 150 yards from the shore? Which bait, ragworm or squid, is best suited to the conditions?

We claim our portion of the deserted beach and skilfully assemble our equipment. I demonstrate to Joe the necessary but brutal art of baiting the hook. Deftly, I disembowel a worm and work the hook through it to ensure that it is not lost when the cast is made. Blooded, I sense Joe's rising excitement, his wish to test himself.

Again, I (sometimes known as 'Greybeard') counsel patience. There is no 'youtube' here to offer assistance. I deploy well-honed pedagogic skills, forged in the furnaces of  innercity classrooms, to help demonstrate the need for co-ordination of hand and eye, the importance of releasing the line at the precise moment the weighted 'trace' (technical term - see glossary) is launched in the desired direction. At its best, this choreography of man and rod (no relation) has been likened to four dimensional poetry.

I make a first, laboured cast of just 50 yards or so and hurriedly withdraw the line in order to allow Joe an opportunity. My tuition receives instant reward as he synchronises effortlessly to drop the weight with a satisfying 'plop' 100 yards distant into the deepest part of the trench that lies between ourselves and the breakers. John and myself take turns to use our second rod whilst keeping a 'weathered eye' on the youngling. My son is expectant. I smile in a knowing way to my brother and he returns the same - 'the boy has much to learn'.

Whatever the odds against success, we share the responsibility of awareness that back in our faux-traditional, black, weather-boarded, barns , rented for a full week, there are women and children dependent on our efforts. The nearest supermarket may not be open throughout the Christmas week and our numbers on Christmas Eve will swell to twenty as the tribe gathers for the annual ritual.

Distracted by our cares, we are at first unaware that Joe has decided to reel in. He says that he has some resistance on the line and I assure him this is likely to be the seaweed I have already encountered from my own casts. Then I see the silver agitation in the shallows and leap to help him with the catch. The fish is fat, sleek and writhing in my hand as I remove the hook.

In Dorset, Norfolk and most recently at Aldeburgh, a few miles to the south, my brother and I have spent many, many hours in quest of a fish worthy of putting on a plate. In fact neither of us has ever caught a (marine) fish as large as this. Now, Joe, with virtually his first cast has landed a sea bass (initially identified by myself as 'a large whiting'; a mistake rectified by a passing fisherman) worth £20 to a local restaurant. Later, Joe insists that Judy (who together with Diana has brought lunchtime sustenance) takes photos of him with rod and fish held aloft.

John and I continue fishing for several hours, long after Joe has lost interest and left us to explore Southwold with Oren, Ella and Claire. Between us we manage to catch several more small whiting and dabs but nothing like Joe's sea bass. It is the only fish we will eventually cook and eat. Though admitting it chokes me like a half-swallowed fishbone - it was delicious.

Fast forward to now. The stay in our well-appointed Suffolk barns was a great success. Photos can be viewed on my facebook home page or that of Chris Ling, Claire Lichtenstein, Anna Holland or Stephen Ling.

The week was unique, including as it did just about everyone on the 'Lingside'. To be honest, however, I was largely a spectator over the course of that memorable week. Everyone mucked in and created something truly special but it was as much as I could do to maintain some of the daily routines that have become so important to me. There were occasions when I lapsed from my healthy lifestyle and consumed some alcohol, turkey, chocolate and even a couple of pieces of gammon!

Back home our vegan routines have been re-established and given that I'm at the 'top' of my chemo phase of the cycle, I'm feeling pretty good. No doubt this improvement with sore-feet syndrome and fatigue is due largely to the reduced dosage that was agreed back in October (see 22/10/12 post). What remains unknown is the consequence of this reduced dosage for the efficacy of the drugs. The next CT scan, to be discussed with my oncologist in late January, will give us an answer.

I would like to send a Happy New Year greeting and much love to everyone who has made it this far. Oh! and I have managed to see 'The Hobbit - An Unexpected Journey' in the company of Joe and his old schoolfriend Matt before Joe returned to Durham.

But you may already have guessed as much.

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.