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'.
Tuesday, 25 September 2012
Thursday, 20 September 2012
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.
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.
Thursday, 6 September 2012
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.
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.
Wednesday, 5 September 2012
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.
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.
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