For those of you who have asked the question 'How do you adjust to/cope with/come to terms with the knowledge that you have a terminal illness?', I think the considered answer must be, 'by degrees'. You may think, more than two years on since I was first given the news, that I'd be reconciled to the idea by now - but I am still insulated from reality.
So there are times, such as now, today, when I simply can't take in what is happening to me, when a sense of sheer incredulity takes over.
I 'know' that my life must be under threat because I hear people, skilled, well-paid, difficult-to-reach people, tell me so in a matter-of-fact way. It is implicit, rather than explicit, deduced by reference to the dwindling list of treatment options, the reported growth in nodules, the limited time-efficacy of drugs.
I know too, because I write a blog that people read, (or at the very least, visit) and then there are the concerned enquiries from friends and relatives - and so, my difficult-to-extinguish hope that this is all a mistake, or a dream, is unsustainable, in error.
The most recent reminder of my plight arrived yesterday.- but first, I need to take you back to my previous blog.
If you recall (I know there are other issues in your life, so forgive the reprise) my last CT scan revealed growth in the nodules/lymph node/tumour - these terms appear interchangeable at times - and as a result my oncologist recommended a shift from one to another, equally unpronounceable, drug. I was due to sign the consents the following week and we duly returned fully expecting to do so.
However, Diana raised at this follow-on appointment, the question of a different treatment for kidney cancer, one pioneered by the Christie Hospital in Manchester; immunotherapy. She had first mentioned this approach two years ago but our consultant had deftly dismissed it in favour of oral drug therapy.
Two years later, he responded differently, saying that should we wish him to make a referral he would be happy to email the consultant in Manchester. We asked for a few hours to research and discuss before getting back to him later the same day.
To agree to a referral seemed a 'no-brainer' - there was nothing to be lost from gaining further information and a second opinion. So, the referral was requested by us and following a few days in Norfolk with the family, we returned to find an appointment had been made.
The date was yesterday's.
In the early morning, we joined the other teeming 'car-cells' and moved up the M6 hoping to avoid a haematoma in this artery well-known for its sclerotic condition. We reached the hospital in good time, thanks to the navigational skills of GPS, and after giving bloods and having my first-ever ECG, we met the consultant.
I won't bore you with the details but the upshot was that 'the Prof' as he is soubriqueted, considered that I was in the category most likely to gain from the treatment programme. The tantalising, if statistically remote, prospect of a 'cure' - never on offer with targeted drug therapy - was held aloft and eagerly examined but for such a glittering prize there is of course a high price to be paid.
Like Indiana Jones, in the Temple of Doom, I have to dodge the many potential and strikingly unpleasant side effects. The therapy works through the repeated intravenous infusion of a natural protein that supplements the body's own immune system, stimulating it to make killer T-cells that attack the tumour.
Patients are hospitalised for five days in two phases separated by two weeks recovery followed by eight weeks recovery. A CT scan follows before the next full cycle. If a patient is benefitting from the programme, there may be as many as four full cycles, spanning something like a year in duration.
So, there's a decision to be made - and speedily. I have already been off all cancer medication for six weeks. I know what those close to me are thinking but they all say that ultimately, the choice is mine. You are probably thinking along similar lines.
Meanwhile, I have been shocked to discover - or is that rediscover? - that I have a life-threatening condition.
Writing to you helps me to process the fact. Thank you.
Thursday, 8 August 2013
Saturday, 13 July 2013
The Streets of London
A couple of blogs ago, Judith left a comment in which she encouraged me to 'keep sharing' - so, after a lengthy break - I'm back.
A lot has happened in the mind-numbing narrative of my condition and then there have been travels and trips of a modest mileage and other events.......but......
I guess, if you can face it, I should start by updating you all on the results of the MRI scan (21/05/2013). It confirmed serious 'wear and tear' but, more importantly, failed to show any 'hot spots' in the spinal column - the disease had not metastasised. Ipso facto, the back pain of which I had complained around Easter time was not the result of any spread of cancer.
So, this was good news and on the back of these results the oncology registrar had no objections to my request for a further reduction in the chemo dosage. I would be on just half of that on which I had begun the regimen nearly two years earlier.
Even better, with the help of a re-referral to Mark, 'my physiotherapist' at QEH, I began to develop an understanding of what had happened to me at the time of the acute back pain. I came to realise that the episode of over-exercising on the bike coincided with my self-initiated, weeks-earlier efforts to reduce the dosage of my other, neuropathic, medication. The exercising had triggered muscular inflammation or some such and I no longer had the levels of drugs in my body to control the neurological trauma. Result; excruciating, scary, crippling, prolonged pain. QED.
However, with the neuropathic drug dosage now restored to the original levels, I was able, tentatively, to return via 'Pilates-lite' to cardio-vascular working-out. I even got back on our abandoned exercise bike.
That's the good news.
.... but, about two weeks ago I had another CT scan - 'to set a baseline', as the oncologist said, for the newly-reduced chemo. Yesterday, I had the follow-up appointment and the result is - 'all-change'.
The scan revealed regrowth of the lymph nodes in my chest and modest growth of one of the nodes in my lungs. We are still talking 'small increases' but sufficient for him to conclude that the drug I am on may be losing its efficacy (but not as a result of the reduced dosage). The average length of patient-time on this drug is eleven months, I had been on it for nearly two years - my time was up.
Consequently, he was recommending a different drug, 'son of Sunitinib - Axitinib.' I know they sound like Sumerian or Persian princes but they are part of this new generation of oral chemotherapy and this new drug had only emerged from clinical trials and been passed by NICE in the early part of this year. He assured me that the trials demonstrated that the side effects were less severe than Sunitinib but the Googling I have undertaken today, reveals a very long list of 'probables', 'possibles' and 'unlikelys'.
I told him that we would 'go' with his recommendation - that 'I was in his hands'. He, a modest man, said that he was uncomfortable with taking that responsibility. The fact is; the responsibility is mine (I sign the consents next week), even if I have need to defer to his expertise.
This consultation was quickly followed by an invitation to join a pharmacology department pre-research discussion on the third floor of the Cancer Centre. Of course, we had already agreed to take part. We spent more than an hour in a small group of patients, partners and pharmacists in an exchange led by a university lecturer. The research focus, to be honest, appeared to be too narrow and perhaps, looking in the wrong place.
They wanted to learn what we, the patients and partners, wished to know that would help with the self-administration of our medication. There was one man present who was taking more than a dozen different drugs. He had gone home, after his first visit to the hospital pharmacy, with a carrier bag full of pills and potions. Living alone, he had developed his own spreadsheet to help make sense of it all. He struggled to contain his emotions as he spoke of the way some drugs had triggered deep depression.
For Diana and myself however, the question of what we wanted to know went wider than any narrow focus on drugs. What we wanted to know about appeared to be outside the knowledge boundaries of many of the specialists we have met; information about holistic approaches, alternative therapies that can help hand back a sense of control to the patient and family. We don't expect a beleaguered NHS to offer this as part of the 'normal service' - only that they keep an open mind and provide signposts (no doubt with the obligatory disclaimers).
The other thing with which they might assist, is bringing together people who are going through related experiences. I learned so much from listening to other patients, not least a sense of 'if you think you have a raw deal, think again'.
I guess this is the same kind of message Ralph McTell has been singing about for more than forty years.
A lot has happened in the mind-numbing narrative of my condition and then there have been travels and trips of a modest mileage and other events.......but......
I guess, if you can face it, I should start by updating you all on the results of the MRI scan (21/05/2013). It confirmed serious 'wear and tear' but, more importantly, failed to show any 'hot spots' in the spinal column - the disease had not metastasised. Ipso facto, the back pain of which I had complained around Easter time was not the result of any spread of cancer.
So, this was good news and on the back of these results the oncology registrar had no objections to my request for a further reduction in the chemo dosage. I would be on just half of that on which I had begun the regimen nearly two years earlier.
Even better, with the help of a re-referral to Mark, 'my physiotherapist' at QEH, I began to develop an understanding of what had happened to me at the time of the acute back pain. I came to realise that the episode of over-exercising on the bike coincided with my self-initiated, weeks-earlier efforts to reduce the dosage of my other, neuropathic, medication. The exercising had triggered muscular inflammation or some such and I no longer had the levels of drugs in my body to control the neurological trauma. Result; excruciating, scary, crippling, prolonged pain. QED.
However, with the neuropathic drug dosage now restored to the original levels, I was able, tentatively, to return via 'Pilates-lite' to cardio-vascular working-out. I even got back on our abandoned exercise bike.
That's the good news.
.... but, about two weeks ago I had another CT scan - 'to set a baseline', as the oncologist said, for the newly-reduced chemo. Yesterday, I had the follow-up appointment and the result is - 'all-change'.
The scan revealed regrowth of the lymph nodes in my chest and modest growth of one of the nodes in my lungs. We are still talking 'small increases' but sufficient for him to conclude that the drug I am on may be losing its efficacy (but not as a result of the reduced dosage). The average length of patient-time on this drug is eleven months, I had been on it for nearly two years - my time was up.
Consequently, he was recommending a different drug, 'son of Sunitinib - Axitinib.' I know they sound like Sumerian or Persian princes but they are part of this new generation of oral chemotherapy and this new drug had only emerged from clinical trials and been passed by NICE in the early part of this year. He assured me that the trials demonstrated that the side effects were less severe than Sunitinib but the Googling I have undertaken today, reveals a very long list of 'probables', 'possibles' and 'unlikelys'.
I told him that we would 'go' with his recommendation - that 'I was in his hands'. He, a modest man, said that he was uncomfortable with taking that responsibility. The fact is; the responsibility is mine (I sign the consents next week), even if I have need to defer to his expertise.
This consultation was quickly followed by an invitation to join a pharmacology department pre-research discussion on the third floor of the Cancer Centre. Of course, we had already agreed to take part. We spent more than an hour in a small group of patients, partners and pharmacists in an exchange led by a university lecturer. The research focus, to be honest, appeared to be too narrow and perhaps, looking in the wrong place.
They wanted to learn what we, the patients and partners, wished to know that would help with the self-administration of our medication. There was one man present who was taking more than a dozen different drugs. He had gone home, after his first visit to the hospital pharmacy, with a carrier bag full of pills and potions. Living alone, he had developed his own spreadsheet to help make sense of it all. He struggled to contain his emotions as he spoke of the way some drugs had triggered deep depression.
For Diana and myself however, the question of what we wanted to know went wider than any narrow focus on drugs. What we wanted to know about appeared to be outside the knowledge boundaries of many of the specialists we have met; information about holistic approaches, alternative therapies that can help hand back a sense of control to the patient and family. We don't expect a beleaguered NHS to offer this as part of the 'normal service' - only that they keep an open mind and provide signposts (no doubt with the obligatory disclaimers).
The other thing with which they might assist, is bringing together people who are going through related experiences. I learned so much from listening to other patients, not least a sense of 'if you think you have a raw deal, think again'.
I guess this is the same kind of message Ralph McTell has been singing about for more than forty years.
Tuesday, 21 May 2013
My great climacteric
Tomorrow, 22nd May 2013,is a significant day for me; it is the occasion on which I enter my great climacteric. A climacteric is defined as 'a period in which some great change is due to take place in the constitution', though whether this be for good or ill is unclear. These periods are said to occur when we reach an age that is a multiple of seven and an odd number; 7x1, 7x3, 7x5, 7x7, 7x9 and some say, in these days of longevity, 7x11 and 7x13. The great climacteric however, is 7x9 = 63
I'm not sure how many further 'great changes' my body can take.
Mid-May also marks the second anniversary of my cancer diagnosis. I was told by the surgeon that the mean survival time for those in my position, with renal cell carcinoma that has metastasised to the lungs, was just in excess of two years.
Now, were I to conform to the mean - that would result in a significant change in my constitution.
However, I do know that the medics and the NHS haven't yet, given up on me.
The MRI scan and the cystoscopy (11/5/2013) have come - but not exactly, gone. The MRI turned out to be a doddle. Concerned as I was by the prospect of being 'entombed' in the tunnel, I took what precautions I could. I discovered that there are two scanners in the QEH Imaging department and one is more spacious than the other. I opted for the former and then requested backup sedation from my G.P. After a telephone consultation in which I asked for advice on the maximum, sub-lethal dosage, she prescribed diazepam. I duly took my tablet at the recommended time and - experienced no change.
For extra insurance, I opted to take my sister into the scanner room. She was to be directed to stand at the head of the scanner and repeatedly assure me of the proximity of my head to life-sustaining, open space.
Ok, so I took some trouble over this.................... but when I was admitted to the scanner room, my concerns evaporated. This bright, spherical , techno-miracle was so different to the elongated toilet roll of earlier experience. It still made a racket when in operation but at least I was unable to hear most of it - I fell asleep.
Now, I await the results as to the origins of my acute back pain. Though fine today, having just returned from a walk through a seasonal, shallow blue ocean in Austey woods near Wootton Wawen with Mary, Pete and Keith, I have been immobilised and bed-ridden on other days.
I see the physiotherapist on Friday and the oncologist, Thursday week. I'm hoping that between them and the radiologist's report, they can come up with a narrative to account for what exactly is going on with my spine - and better still, some advice on how to improve it.
As for the cystoscopy, the 'preamble' went well but the insertion of the 'box brownie' scope came to an abrupt halt when the doctors advised me that they could not continue. I had just settled back, both hands behind my head, in order to watch all the action on the overhead monitor, when they quickly decided they would have to terminate the procedure.
Apparently, I have a stricture, a narrowing, of the urethra and this would mean arranging a further appointment and another procedure. My urethra would be dilated in order to progress and examine the bladder. This will be carried out under general anaesthetic.
To be honest, I wasn't too upset to be told I was coming back for a G.A. (as we say in the business) - but you had probably already guessed as much. Please, don't be misled, I'm actually pretty tough. I once had a rose thorn removed from my finger without any pain relief, save that from my mother 'kissing it better'.
This was quickly ruled out as an option by the medical team last week.
Saturday, 11 May 2013
Green and pleasant land, dark satanic mills
Where to start?
To answer my own question, perhaps with 'the now'.
I am sitting at my desk, early on a bright, but chilly, Saturday morning. I am worried. Within a couple of minutes of emerging, larva-like, from my bed, I could feel the return of acute pain deep in my left buttock at the base of my spine. It had started again yesterday, just before my re-referral appointment to the QEH physiotherapy department was due.
I won't bore you with the details but this pain first occurred after a lengthy workout on an upright bike at Moseley School's Health and Fitness Centre. For a while, until the paracetamol kicked in, the pain was excruciating and I could only move if bent double with my head down to the floor. I was relieved when after a few days on painkillers, I was able to walk as before; not exactly a model of agility and grace but no worse than I had been for what feels like half-a-lifetime ago, when all this began.
The physio was good. He explained that this new, acute pain was probably different to the chronic, neurological pain in my back and leg. The new pain he said was the result of trauma (exercise) and was probably referred to the base of the spine from higher up in the lumbar region. All will hopefully become clearer after I have another full spinal MRI, scheduled for a few days hence.
After previous, claustrophobic, experiences, I am not looking forward to that. It has been ordered by the oncologist after hearing about the acute episode; I think he wants to check for further spinal metastases. For good measure, at the same consultation he ordered another cystoscopy.
'It was only a light pink', I whined after hearing his response to my telling him of a few occasions of blood in my urine (aka haematuria - it sounds more principled in the Graeco-Latin). 'It doesn't matter to him', I mused uncharitably. 'He just clicks a button'.
'And it only happened twice!'
'Three times', Diana added, treacherously.
So, I emerged with a double whammy - and now, this damn acute pain has returned to add another woe....
Enough. Time to change the record/cd/iPod playlist................
I was right about Geoff's funeral (21/4/13). It was emotional and it was special - attended by a sea of mourners. We said 'goodbye' at the crematorium and celebrated his life at an amazing wake in the church hall on Billesley Lane. It was the kind of event with much music, food and drink, that Geoff would have organised - which, in a way, he had.
It has taken, it is taking, a long time to process the events and emotions of that day. Even now, I can feel my mood changing as I type - so I'm not sure that I can write about some of the darker 'stuff' that hung over me like a dense cloud last weekend. We were on Tees-side, a trip planned well before Geoff's death. It is an area of which I had no knowledge beyond the descriptions of an emigre, now honorary Brummie, Neil. He recommended RSPB Saltholme in the Tees estuary and a visit to the famous transporter bridge as well as hinting at other more pre-industrial delights.
We booked two nights in the Premier Inn on the Tees barrage and promised ourselves further nights at more picturesque accommodation as we wended our way home through North Yorkshire.
In one of Saltholme's bird hides, a knowledgeable and friendly RSPB volunteer explained that the original inter-tidal, estuarine, mudflats originally covered more than 14 square miles - but that was in pre-industrial times. Following extensive land reclamation, this very special habitat was now reduced to a few hundred acres.
Saltholme's scrapes and pools are not tidal but combined they elbow their way into a space between the industrial skyline of Middlesborough and the truly impressive chemical works to the south of Hartlepool. The backdrop for the many visitors to the reserve is a filigree pattern of poles, pylons and tall sky-piercing chimneys linked by horizontal pipes; the superstructure of the chemical works. It may sound strange, sacrilegious - even pretentious - but the vista brought to mind the ornate decoration of high-Gothic, rood screens in a mediaeval cathedral.
After the avian delights of Saltholme we moved a short distance up the road to the gleaming, muddy delights of Seal Sands and the Tees National Nature Reserve, remnants of that vast inter-tidal zone mentioned above. Thence to Hartlepool's historic highlights before the frustrating search for something to eat.
Meanwhile a dam of emotion threatened to burst at the most inappropriate moment; at breakfast the following day. I wanted to explain to Diana that I felt myself to be a fraud. There and then, I had to put the stopper back in the bottle; this was neither the time nor the place. Back in the hotel bedroom, I uncorked. Someone had recently said that I was 'inspirational' and others too, reading this blog, have used similar words. They - you - do not know the truth. I am at times a complete mess, hiding behind this jaunty veneer of amusing anecdotes. There is nothing admirable about my fears now made more real by Geoff's death.
But despite Diana's ministrations, I cannot escape the paradox - even this blogged confession has elements of the artful..................
We abandoned the ideas about North Yorkshire and drove home via Redcar, o'erlooked by the Tata steelworks, the Victorian resort of Saltburn and the beautiful Cleveland hills.
To answer my own question, perhaps with 'the now'.
I am sitting at my desk, early on a bright, but chilly, Saturday morning. I am worried. Within a couple of minutes of emerging, larva-like, from my bed, I could feel the return of acute pain deep in my left buttock at the base of my spine. It had started again yesterday, just before my re-referral appointment to the QEH physiotherapy department was due.
I won't bore you with the details but this pain first occurred after a lengthy workout on an upright bike at Moseley School's Health and Fitness Centre. For a while, until the paracetamol kicked in, the pain was excruciating and I could only move if bent double with my head down to the floor. I was relieved when after a few days on painkillers, I was able to walk as before; not exactly a model of agility and grace but no worse than I had been for what feels like half-a-lifetime ago, when all this began.
The physio was good. He explained that this new, acute pain was probably different to the chronic, neurological pain in my back and leg. The new pain he said was the result of trauma (exercise) and was probably referred to the base of the spine from higher up in the lumbar region. All will hopefully become clearer after I have another full spinal MRI, scheduled for a few days hence.
After previous, claustrophobic, experiences, I am not looking forward to that. It has been ordered by the oncologist after hearing about the acute episode; I think he wants to check for further spinal metastases. For good measure, at the same consultation he ordered another cystoscopy.
'It was only a light pink', I whined after hearing his response to my telling him of a few occasions of blood in my urine (aka haematuria - it sounds more principled in the Graeco-Latin). 'It doesn't matter to him', I mused uncharitably. 'He just clicks a button'.
'And it only happened twice!'
'Three times', Diana added, treacherously.
So, I emerged with a double whammy - and now, this damn acute pain has returned to add another woe....
Enough. Time to change the record/cd/iPod playlist................
I was right about Geoff's funeral (21/4/13). It was emotional and it was special - attended by a sea of mourners. We said 'goodbye' at the crematorium and celebrated his life at an amazing wake in the church hall on Billesley Lane. It was the kind of event with much music, food and drink, that Geoff would have organised - which, in a way, he had.
It has taken, it is taking, a long time to process the events and emotions of that day. Even now, I can feel my mood changing as I type - so I'm not sure that I can write about some of the darker 'stuff' that hung over me like a dense cloud last weekend. We were on Tees-side, a trip planned well before Geoff's death. It is an area of which I had no knowledge beyond the descriptions of an emigre, now honorary Brummie, Neil. He recommended RSPB Saltholme in the Tees estuary and a visit to the famous transporter bridge as well as hinting at other more pre-industrial delights.
We booked two nights in the Premier Inn on the Tees barrage and promised ourselves further nights at more picturesque accommodation as we wended our way home through North Yorkshire.
In one of Saltholme's bird hides, a knowledgeable and friendly RSPB volunteer explained that the original inter-tidal, estuarine, mudflats originally covered more than 14 square miles - but that was in pre-industrial times. Following extensive land reclamation, this very special habitat was now reduced to a few hundred acres.
Saltholme's scrapes and pools are not tidal but combined they elbow their way into a space between the industrial skyline of Middlesborough and the truly impressive chemical works to the south of Hartlepool. The backdrop for the many visitors to the reserve is a filigree pattern of poles, pylons and tall sky-piercing chimneys linked by horizontal pipes; the superstructure of the chemical works. It may sound strange, sacrilegious - even pretentious - but the vista brought to mind the ornate decoration of high-Gothic, rood screens in a mediaeval cathedral.
After the avian delights of Saltholme we moved a short distance up the road to the gleaming, muddy delights of Seal Sands and the Tees National Nature Reserve, remnants of that vast inter-tidal zone mentioned above. Thence to Hartlepool's historic highlights before the frustrating search for something to eat.
Meanwhile a dam of emotion threatened to burst at the most inappropriate moment; at breakfast the following day. I wanted to explain to Diana that I felt myself to be a fraud. There and then, I had to put the stopper back in the bottle; this was neither the time nor the place. Back in the hotel bedroom, I uncorked. Someone had recently said that I was 'inspirational' and others too, reading this blog, have used similar words. They - you - do not know the truth. I am at times a complete mess, hiding behind this jaunty veneer of amusing anecdotes. There is nothing admirable about my fears now made more real by Geoff's death.
But despite Diana's ministrations, I cannot escape the paradox - even this blogged confession has elements of the artful..................
We abandoned the ideas about North Yorkshire and drove home via Redcar, o'erlooked by the Tata steelworks, the Victorian resort of Saltburn and the beautiful Cleveland hills.
Sunday, 21 April 2013
Parallel lives
It has been an eventful, emotional, blog-inhibiting few weeks.
My fellow kidney cancer sufferer and good friend, Geoff, has died. Three weeks ago he was admitted to Queen Elizabeth Hospital (QEH) following difficulties with what, at the time, was thought to be a stubborn chest infection. When I first visited him on the 6th floor he lay on his bed in his pyjamas hooked up to a network of translucent tubing as though he had recently struggled free from the grasp of some predatory spider and had yet to wipe the strands of web silk from his body.
In his own words, he looked like a recently-released inmate of a WW2 concentration camp. With sunken cheeks, a grey pallor and little bulk to his once burgeoning limbs, he spoke softly and with dwindling energy towards the end of brief phrases. It was distressing to see him in such a weakened condition. At the same time we and his family really were comforted by the knowledge that he was receiving good care, that he was in the right place.
In the following days, it gradually became clear that he would not be coming home. I managed to visit him just once more and he spoke then of his wish 'to go'. In the few minutes we had, even now at the end of his life, he sought reassurance that I and others would continue the fight to save our allotment site (an issue that had first brought us together more than twelve years earlier). I briefly stroked his head and wished him 'safe journey'. We shook hands. His grasp was still firm. Each of us knew what the other wanted to say.
He was transferred to St Mary's Hospice the following day and died peacefully in his sleep two days later with his family around him.
I will be, I am already, missing the 'big man'. In truth, I have been missing him for many months, ever since his illness robbed him of the strength and mobility required to enjoy our old life. Our friendship had been infused with a new and special quality from the time we were both diagnosed with kidney cancer nearly two years ago. We both had the primary tumour removed and the corrupted kidney with it. We were both informed that our cancer had metastasised to the lungs (principally) and were both administered oral chemo medication.
We have shared many conversations laced with black humour about the nature of our parallel lives; both grammar school boys from county towns, teachers, early marriages, divorces, re-marriages, second families, love of open spaces, neighbourhood communities and finally, illness. We have shared journeys to the QEH Cancer Centre and restorative visits to Winterbourne Gardens. We looked to each other for help in knowing how to live with our condition - and now he has gone.
Geoff would not want us to seek his beatification. For all his faults and possibly because of them, he was, he is, loved by many people. His funeral will be a sad, moving and very special event.
I will continue - and a more fortunate person for having known him.
My fellow kidney cancer sufferer and good friend, Geoff, has died. Three weeks ago he was admitted to Queen Elizabeth Hospital (QEH) following difficulties with what, at the time, was thought to be a stubborn chest infection. When I first visited him on the 6th floor he lay on his bed in his pyjamas hooked up to a network of translucent tubing as though he had recently struggled free from the grasp of some predatory spider and had yet to wipe the strands of web silk from his body.
In his own words, he looked like a recently-released inmate of a WW2 concentration camp. With sunken cheeks, a grey pallor and little bulk to his once burgeoning limbs, he spoke softly and with dwindling energy towards the end of brief phrases. It was distressing to see him in such a weakened condition. At the same time we and his family really were comforted by the knowledge that he was receiving good care, that he was in the right place.
In the following days, it gradually became clear that he would not be coming home. I managed to visit him just once more and he spoke then of his wish 'to go'. In the few minutes we had, even now at the end of his life, he sought reassurance that I and others would continue the fight to save our allotment site (an issue that had first brought us together more than twelve years earlier). I briefly stroked his head and wished him 'safe journey'. We shook hands. His grasp was still firm. Each of us knew what the other wanted to say.
He was transferred to St Mary's Hospice the following day and died peacefully in his sleep two days later with his family around him.
I will be, I am already, missing the 'big man'. In truth, I have been missing him for many months, ever since his illness robbed him of the strength and mobility required to enjoy our old life. Our friendship had been infused with a new and special quality from the time we were both diagnosed with kidney cancer nearly two years ago. We both had the primary tumour removed and the corrupted kidney with it. We were both informed that our cancer had metastasised to the lungs (principally) and were both administered oral chemo medication.
We have shared many conversations laced with black humour about the nature of our parallel lives; both grammar school boys from county towns, teachers, early marriages, divorces, re-marriages, second families, love of open spaces, neighbourhood communities and finally, illness. We have shared journeys to the QEH Cancer Centre and restorative visits to Winterbourne Gardens. We looked to each other for help in knowing how to live with our condition - and now he has gone.
Geoff would not want us to seek his beatification. For all his faults and possibly because of them, he was, he is, loved by many people. His funeral will be a sad, moving and very special event.
I will continue - and a more fortunate person for having known him.
Sunday, 24 March 2013
Waste; the final frontier.
I am now two weeks into the current 6 week chemo cycle (weeks 5 and 6 being drug-free), my 14th. I continue to oscillate between optimism and the 'slough of despond'. At this precise moment, I'm feeling good - largely I think because I've had a couple of (modestly) thorough workouts on exercise bikes both here at home and at my old school's Health and Fitness Centre.
But then, I am reminded that I was feeling similarly upbeat just one short week ago; my exercise regime was on the up, my weight down (marginally) and I was back to juicing and making smoothies using our home-made, organic, almond milk.
Then, on the Friday morning, just as we were preparing to leave for a forecasted wet weekend in Southampton, Di called to me from the bedroom, to say that the green waste lorry was outside, on the road. She knew that I had recently filled three bags with woody clippings and trimmings from the garden and was ever-hopeful for a collection.
I kerlumped and plodded into action.
The three bags left on the patio had to come through the house. They were not heavy but they were bulky. Leaving all interconnecting doors open and various ornaments and household papers strewn across the floor, I reached the front door.
'Too late, they've gone,' added a distant voice, helpfully.
I was already too breathless to tell Di of my instantaneous decision to pursue the lorry. I decided that the front door, as with all the others, would have to remain open.
If all this already sounds a little over-the-top, you have to understand that, in our part of the solar system, green waste removal is not subject to any known laws of physics. Comets are more predictable - and more frequent. It was, and is, necessary to seize the moment; carpe temporis punctum.
So, by the time I'd opened the door and reached the pavement, the wheezing, cumbersome bulk (that's the lorry, by the way) had disappeared from view. I quickly resolved, reverting to my pre-cancer mindset, to run after it. Here, after all, was a man who had exercised just the previous day on an elite model exercise bike for a combined total of 45 minutes, burning more than 250 calories in the process and who still had the strength to walk around the perimeter of the local golf course. The vehicle had to be somewhere just around the corner. I didn't wait to do the maths - it was a no-brainer.
By the time I had reached the crossroads, looked right and spotted the stationary lorry some 300 metres further up Cambridge Road, I had been forcefully reminded of my new status. It was as though my waist was attached to some strong, inelastic, rubber rope that permitted me to move but only at the cost of increased resistance. An alternative analogy would be that my veins carried, not oxygenated blood, but the product following its mixture with my toxic medication, molten lead.
Encouraged by the fact that the vehicle was motionless, I continued my pursuit, catching up and then overtaking, an elderly neighbour, Rosemary. With my bulky load I pushed her, with arms splayed, to the wall and exchanged a few incoherent words by way of apology and explanation. After further exertion, I realised that I had been spotted by one of the hi-viz-jacketed team who waited nonchalantly for my arrival then helped me to throw the bags into the rear of the vehicle; for that at least, I was grateful.
I was wrecked. I slumped forward with rubbery hands on rubbery knees. The rubbery band, against which I had so recently strained, had reached maximum extension but far from pulling me back, now required that I fold it up and return under my own steam.
I reached a bemused, but patient, Rosemary, who, at nearly 80 years, has, on occasion, been the recipient of community-care type interventions on my part. Now she, her brow furrowed with concern, insisted on walking me home. This frail, white-haired woman with poor eyesight and dodgy knees, took hold of my hand and hobbled with me across the road and back to my, still-open, front door. So much for my regained athletic prowess. I was reminded of what I had irrevocably become - needy and knackered.
I felt deflated for much of the weekend in Southampton, recovered by Sunday, (thanks, in part, to a late-night chat with Mike) only to hit more choppy waters on the Monday -
and so it goes, and so it goes.
But then, I am reminded that I was feeling similarly upbeat just one short week ago; my exercise regime was on the up, my weight down (marginally) and I was back to juicing and making smoothies using our home-made, organic, almond milk.
Then, on the Friday morning, just as we were preparing to leave for a forecasted wet weekend in Southampton, Di called to me from the bedroom, to say that the green waste lorry was outside, on the road. She knew that I had recently filled three bags with woody clippings and trimmings from the garden and was ever-hopeful for a collection.
I kerlumped and plodded into action.
The three bags left on the patio had to come through the house. They were not heavy but they were bulky. Leaving all interconnecting doors open and various ornaments and household papers strewn across the floor, I reached the front door.
'Too late, they've gone,' added a distant voice, helpfully.
I was already too breathless to tell Di of my instantaneous decision to pursue the lorry. I decided that the front door, as with all the others, would have to remain open.
If all this already sounds a little over-the-top, you have to understand that, in our part of the solar system, green waste removal is not subject to any known laws of physics. Comets are more predictable - and more frequent. It was, and is, necessary to seize the moment; carpe temporis punctum.
So, by the time I'd opened the door and reached the pavement, the wheezing, cumbersome bulk (that's the lorry, by the way) had disappeared from view. I quickly resolved, reverting to my pre-cancer mindset, to run after it. Here, after all, was a man who had exercised just the previous day on an elite model exercise bike for a combined total of 45 minutes, burning more than 250 calories in the process and who still had the strength to walk around the perimeter of the local golf course. The vehicle had to be somewhere just around the corner. I didn't wait to do the maths - it was a no-brainer.
By the time I had reached the crossroads, looked right and spotted the stationary lorry some 300 metres further up Cambridge Road, I had been forcefully reminded of my new status. It was as though my waist was attached to some strong, inelastic, rubber rope that permitted me to move but only at the cost of increased resistance. An alternative analogy would be that my veins carried, not oxygenated blood, but the product following its mixture with my toxic medication, molten lead.
Encouraged by the fact that the vehicle was motionless, I continued my pursuit, catching up and then overtaking, an elderly neighbour, Rosemary. With my bulky load I pushed her, with arms splayed, to the wall and exchanged a few incoherent words by way of apology and explanation. After further exertion, I realised that I had been spotted by one of the hi-viz-jacketed team who waited nonchalantly for my arrival then helped me to throw the bags into the rear of the vehicle; for that at least, I was grateful.
I was wrecked. I slumped forward with rubbery hands on rubbery knees. The rubbery band, against which I had so recently strained, had reached maximum extension but far from pulling me back, now required that I fold it up and return under my own steam.
I reached a bemused, but patient, Rosemary, who, at nearly 80 years, has, on occasion, been the recipient of community-care type interventions on my part. Now she, her brow furrowed with concern, insisted on walking me home. This frail, white-haired woman with poor eyesight and dodgy knees, took hold of my hand and hobbled with me across the road and back to my, still-open, front door. So much for my regained athletic prowess. I was reminded of what I had irrevocably become - needy and knackered.
I felt deflated for much of the weekend in Southampton, recovered by Sunday, (thanks, in part, to a late-night chat with Mike) only to hit more choppy waters on the Monday -
and so it goes, and so it goes.
Thursday, 14 March 2013
Here be dragons.....
In former times, both the prospect and undertaking of travel have (usually) been a source of enjoyment. Since being diagnosed with kidney cancer and scoliosis of the spine however, my feelings have shifted. I want to use whatever time is available to see, to meet with, to experience both known and unknown people and places but I am also more circumspect about moving away from home with its comforts, security and routines.
All this is a preamble to recording that we have just returned from a few days in north Suffolk exploring the coastal region between Southwold and Aldeburgh. This is the area in which we were staying last Christmas (There and back again; 08/01/2013) but having received the gift of an overnight stay in a Suffolk village coaching inn from my sister, we thought it a good idea to turn the single day into a longer, exploratory holiday and then tacked onto it a weekend with the extended family in Norwich.
I particularly wanted to sample, with Di, the delights of Minsmere RSPB reserve. It did not disappoint - and neither did Di. She was so enthused that we spent the larger part of two days there. Safe within this wildlife sanctuary it was as though we could take long, deep breaths as the wheels of the world slowed. Against the backdrop of the distant 'Taj Mahal of the nuclear age', Sizewell B power station, we scanned acres of brackish, shallow pools bespeckled with all manner of ducks, gulls and waders. With the help of various fellow-birders we spent hours in various hides disentangling our teal from our wigeon, our snipe from our redshank, our shovellers from shelduck, our avocets from exocets.
Walking alongside extensive, straw-coloured, reedbeds we briefly glimpsed the Wellington bomber of a bittern in flight and the dark and sinister spread primaries of hunting marsh harriers. We would have spent a third morning at Snape RSPB but the weather took a turn for the worse, reducing visibility and thereby our chances of seeing very much birdlife.
Thanks to an emailed suggestion from my friend John, exiled in London these last forty years, we also discovered the unusual, heather-cloaked 'sandlings' of Dunwich Heath which rises above Minsmere on its northern border. This elevated position is the reason for the location there of a block of old, white-walled, coastguard cottages now available for rent from the landowners, the National Trust. We will try to book a week very soon.
Finally, if you don't know Framlingham, it is well worth a visit. A barman insisted it was rated one of 'the ten best places to live' within the UK - but he did concede that it still lags well behind Moseley in Birmingham.The curtain-walled castle is enormous, signifying, as does the scale and wealth of the nearby church, the former status of what is today a small, relatively-unknown, market town. Now downgraded to a position where it is approached only by network of B roads, Framlingham's history and heritage leave us vestiges of the world of those who came before.
But to return to the theme of the first paragraph; however interesting, informative and delightful travel may be; however rewarding it is to see family and sites of familiarity - climbing into my own bed takes some beating. So here is another paradox; my condition provides both a stimulus to experience a wider world while at the same time, serving to shrink my horizons. In the last two years I have travelled to more places than ever but never been so fearful of the unknown obstacles that may arise; the furniture in a restaurant that makes sitting so uncomfortable, the bed that is too short or too lumpy, the inability to follow the diet that has become so central to my health, the prospect of mislaying my medication.
It is as though the psychological map of the known world has grown smaller and the uncharted oceans with their unknown lands, bear the medieval warning; 'Here be dragons.......'
All this is a preamble to recording that we have just returned from a few days in north Suffolk exploring the coastal region between Southwold and Aldeburgh. This is the area in which we were staying last Christmas (There and back again; 08/01/2013) but having received the gift of an overnight stay in a Suffolk village coaching inn from my sister, we thought it a good idea to turn the single day into a longer, exploratory holiday and then tacked onto it a weekend with the extended family in Norwich.
I particularly wanted to sample, with Di, the delights of Minsmere RSPB reserve. It did not disappoint - and neither did Di. She was so enthused that we spent the larger part of two days there. Safe within this wildlife sanctuary it was as though we could take long, deep breaths as the wheels of the world slowed. Against the backdrop of the distant 'Taj Mahal of the nuclear age', Sizewell B power station, we scanned acres of brackish, shallow pools bespeckled with all manner of ducks, gulls and waders. With the help of various fellow-birders we spent hours in various hides disentangling our teal from our wigeon, our snipe from our redshank, our shovellers from shelduck, our avocets from exocets.
Walking alongside extensive, straw-coloured, reedbeds we briefly glimpsed the Wellington bomber of a bittern in flight and the dark and sinister spread primaries of hunting marsh harriers. We would have spent a third morning at Snape RSPB but the weather took a turn for the worse, reducing visibility and thereby our chances of seeing very much birdlife.
Thanks to an emailed suggestion from my friend John, exiled in London these last forty years, we also discovered the unusual, heather-cloaked 'sandlings' of Dunwich Heath which rises above Minsmere on its northern border. This elevated position is the reason for the location there of a block of old, white-walled, coastguard cottages now available for rent from the landowners, the National Trust. We will try to book a week very soon.
Finally, if you don't know Framlingham, it is well worth a visit. A barman insisted it was rated one of 'the ten best places to live' within the UK - but he did concede that it still lags well behind Moseley in Birmingham.The curtain-walled castle is enormous, signifying, as does the scale and wealth of the nearby church, the former status of what is today a small, relatively-unknown, market town. Now downgraded to a position where it is approached only by network of B roads, Framlingham's history and heritage leave us vestiges of the world of those who came before.
But to return to the theme of the first paragraph; however interesting, informative and delightful travel may be; however rewarding it is to see family and sites of familiarity - climbing into my own bed takes some beating. So here is another paradox; my condition provides both a stimulus to experience a wider world while at the same time, serving to shrink my horizons. In the last two years I have travelled to more places than ever but never been so fearful of the unknown obstacles that may arise; the furniture in a restaurant that makes sitting so uncomfortable, the bed that is too short or too lumpy, the inability to follow the diet that has become so central to my health, the prospect of mislaying my medication.
It is as though the psychological map of the known world has grown smaller and the uncharted oceans with their unknown lands, bear the medieval warning; 'Here be dragons.......'
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