Yesterday I saw my oncologist. He wanted to know about the cystoscopy, once I'd reminded him that it had happened. He was happy to learn that the result was positive but as he'd yet to receive any report - he'd only got my word for it.
He commented on the fact that my hair (beard, eyebrows, nasal, ponytail) was turning white. 'That's the effect of the drugs.' Diana wanted to know how he explained her condition....
But, I jest. To be honest I came away more than a little chastened. He spoke of the fact that even if the nodules were shrunk to a point where they were no longer detectable, I would still continue with the 'chemo'. He said that they would re-appear and would in any case ultimately prove resistant to the toxicity of the drugs. 'At that point we will have to try something else' - but he didn't sound very optimistic.
My head knows this condition isn't curable but my head isn't always fully engaged.
We returned home and updated the 'hired help', my brother John. Invited to spend a few days with us, he has been working through a list of DIY jobs including what will be, to my knowledge, the only listed wood store in the UK. (He's very thorough).
As a 'thank you' I took him out for a meal last night. We went to a new Asian restaurant, Mughal e Azam on the Stratford Road in Sparkhill. The building is a W. H. Bidlake congregational church dating from the 1930s. It is listed grade II. I can recommend it both for the food and the experience.
It is an example of a fine building that has found a new purpose. Decorations suspended from walls and ceilings put me in mind of the Hagia Sophia in Istanbul. The aim in both buildings is to demonstrate that the premises are under new management but that there is still pride in the drama and beauty of the original design.
This line of argument may not find favour with the small congregation that chose to sell up and move on.
But then, 'all change is difficult'.
Friday, 24 February 2012
Thursday, 16 February 2012
oh-my-goshscopy!
On Monday evening we were at the Kitchen Garden Cafe in Kings Heath, celebrating Jenny's 60th birthday. It was great to see a lot of friends some of whom have not been part of the regular round of walking, visiting and tea-quaffing - and others who have. This was an extremely potent mix of hugging and warmth from both men and women. But it's the women who make sustained and unselfconscious contact through embracing and the holding of hands. At times like these it feels as though I have attained some special status - that I have been invited into a female world that for men usually hovers somewhere nearby - we sense its presence but it exists in a different dimension.
But don't be misled - it isn't always like this.
I've noticed that as 'cystoscopy day' approached a significant number of women couldn't help themselves - they relished, in a muted but nevertheless, perceptible manner a degree of satisfaction that 'the boot is on the other foot.' I knew what they'd like to say - 'Now, we'll see how you like it when you're subjected to an invasive procedure' or 'What a fuss over an internal examination; during my pregnancy I had, goodness knows how many doctors.............'
What I hadn't bargained for was the number of women involved in administering this procedure at the Queen Elizabeth Hospital. I saw one man throughout my time in the endoscopy department. He was the consultant who having shaken my hand, disappeared from sight leaving me in the hands, literally, of four women, one doctor and three nurses. I resolved to be 'cool'; even while lying prone.
Having rearranged my clothing a nurse placed large paper squares over my exposed body. She then swiftly pulled the centre of one square into a mini peak and tore it to leave a strategically-positioned opening . Like an Inuit over an ice-hole the doctor then went fishing.
I'd expected them to be clinical and 'matter of fact' but I'd also been told in the prep room that it would be 'a very thin' tube that would be inserted into my 'water pipe'. ('Urethra' I'd corrected her - we're all professionals here.)
The instrument was considerably more robust than that which I'd imagined; a shiny black object tapering to a mobile, flexible tube with multi-coloured eye at its tip.
There was certainly no 'foreplay'. I'll spare you the details but suffice to say I was soon watching an image of the coloured tube that is my urethra. I had assumed that the screen above the operating table might have been used for something entertaining like a re-run of the Swansea - Norwich match from the weekend. Nobody looked like they were being entertained though I was making a brave attempt at it. 'Is that filmy tissue in the picture normal?', I asked in what I hoped was a nonchalant voice.
The young doctor commented on the narrowness of my urethra and tried to make her request that someone find the consultant sound perfectly normal. Then after much tentative manipulation and with the help of another nurse she finally managed to make progress and we were looking at the creased walls of my bladder. She cancelled the request to reach the consultant, went on a Cook's tour and concluded that all was well.
The alien one-eyed worm was swiftly removed. Boy, that felt a better. I didn't hang about. With my hospital trousers rapidly hitched up, she detained me long enough to say that there was nothing she could see that was of any concern. If I had further problems I should contact my G.P.
In the recovery bay I exchanged some effortless banter with another male patient before the nurse discharged me with the injunction that I drink lots of water for the following 24 hours. Some hours later my bladder is calming down.
A couple of days earlier the results of my upper spine scan came in. On the phone, the consultant said they were perfectly normal.
So far, in 2012, things have gone pretty well; shrinking nodules, a functioning cervicothoracic spine and a urethra that does undoubtedly lead, eventually, to a bladder. I wonder how many other parts of me can be confirmed as normal?
As for the female cystoscopy team, I'm not saying they enjoy their work exactly but I don't think I would want to be in the canteen when they were sharing some 'down time'.
But don't be misled - it isn't always like this.
I've noticed that as 'cystoscopy day' approached a significant number of women couldn't help themselves - they relished, in a muted but nevertheless, perceptible manner a degree of satisfaction that 'the boot is on the other foot.' I knew what they'd like to say - 'Now, we'll see how you like it when you're subjected to an invasive procedure' or 'What a fuss over an internal examination; during my pregnancy I had, goodness knows how many doctors.............'
What I hadn't bargained for was the number of women involved in administering this procedure at the Queen Elizabeth Hospital. I saw one man throughout my time in the endoscopy department. He was the consultant who having shaken my hand, disappeared from sight leaving me in the hands, literally, of four women, one doctor and three nurses. I resolved to be 'cool'; even while lying prone.
Having rearranged my clothing a nurse placed large paper squares over my exposed body. She then swiftly pulled the centre of one square into a mini peak and tore it to leave a strategically-positioned opening . Like an Inuit over an ice-hole the doctor then went fishing.
I'd expected them to be clinical and 'matter of fact' but I'd also been told in the prep room that it would be 'a very thin' tube that would be inserted into my 'water pipe'. ('Urethra' I'd corrected her - we're all professionals here.)
The instrument was considerably more robust than that which I'd imagined; a shiny black object tapering to a mobile, flexible tube with multi-coloured eye at its tip.
There was certainly no 'foreplay'. I'll spare you the details but suffice to say I was soon watching an image of the coloured tube that is my urethra. I had assumed that the screen above the operating table might have been used for something entertaining like a re-run of the Swansea - Norwich match from the weekend. Nobody looked like they were being entertained though I was making a brave attempt at it. 'Is that filmy tissue in the picture normal?', I asked in what I hoped was a nonchalant voice.
The young doctor commented on the narrowness of my urethra and tried to make her request that someone find the consultant sound perfectly normal. Then after much tentative manipulation and with the help of another nurse she finally managed to make progress and we were looking at the creased walls of my bladder. She cancelled the request to reach the consultant, went on a Cook's tour and concluded that all was well.
The alien one-eyed worm was swiftly removed. Boy, that felt a better. I didn't hang about. With my hospital trousers rapidly hitched up, she detained me long enough to say that there was nothing she could see that was of any concern. If I had further problems I should contact my G.P.
In the recovery bay I exchanged some effortless banter with another male patient before the nurse discharged me with the injunction that I drink lots of water for the following 24 hours. Some hours later my bladder is calming down.
A couple of days earlier the results of my upper spine scan came in. On the phone, the consultant said they were perfectly normal.
So far, in 2012, things have gone pretty well; shrinking nodules, a functioning cervicothoracic spine and a urethra that does undoubtedly lead, eventually, to a bladder. I wonder how many other parts of me can be confirmed as normal?
As for the female cystoscopy team, I'm not saying they enjoy their work exactly but I don't think I would want to be in the canteen when they were sharing some 'down time'.
Sunday, 5 February 2012
My magnetic personality
Last Thursday, seated in the 'ante-room' to the Royal Orthopaedic Hospital MRI scanner, the radiographer was going through the usual checklist of questions designed to ensure that a part of me didn't become overly-attracted to the super-powerful magnet I was about to enter. I established with her that the shrapnel the military medics had been unable to remove in my left leg would be well outside the neck and chest (cervicothoracic) region under investigation. She made a monotone response to indicate she had heard this one many times before but this only served to strengthen my resolve to come up with an original line and make her, or a colleague, chuckle in appreciation.
Next, I thought it best to establish that this new ROH scanner (one of many that I've visited in the West Midlands!) was as I remembered, 'doughnut-shaped' -and reassuringly open on both sides. Her brow furrowed and she told me that though it was more capacious than the one in which I'd had my claustrophobic experience (see Thursday 16th June 2011 post) it was still of the 'tunnel' variety and that I would need to be taken fully into the scanner. This instantaneously squashed all ambition to amuse her. I could already sense a warm fluid rising through my trunk and limbs and the automatic intake of deeper breaths.
We agreed that I'd have a go.
Inside the tunnel I was focused on only one thing, the small mirror locked into place above my head and set at a forty-five degree angle so that I could see into the airy, life-enhancing and spacious room I had so recently entered. I had been assured that the procedure would take only fifteen-twenty minutes. I wasn't told, however, that, once inside the tunnel, you enter a 4th dimensional time-warp. This was the longest twenty minutes of my short life. Only the blurred sense of people in hospital uniforms pursuing their normal lives beyond the viewing window and my enhanced yogic breathing kept me from the hazardous cliff edge of panic. The headphones gurgled some baroque music, intermittently obliterated by the thunderous roar of the scanner that gave every impression of trying and failing, to reach a speed that would enable it to take off.
But, I hear you ask; 'How did you get to be in yet another scanner? Surely every part of your body is already, intimately known to modern science?'
Well, let me take you back to the last post - the one you, unkindly, thought would never end . If you recall I had mentioned then that my next appointment, in late January, was to be with the consultant at the ROH. I expressed the opinion then that I was so fed up with the neurological and mechanical discomfort in my back and leg that I was prepared to request a surgical procedure on my poor scoliotic spinal column.
The surgeon had other ideas.
I imagine that medics are taught that there are at least three sources of information that might help them diagnose a patient's condition; physical examination, technology-based testing (such as blood and urine samples, all manner of scans and 'oscopys') and finally, 'verbal feedback'. However, asking me questions about my back pain is something in which my consultant isn't particularly interested. He is a 'scan man'. He has looked at them before I enter his office and so knows what outcome he wants - and assisted by a personable, authoritative style he usually gets it.
Having established that the epidural (see 23rd November 2011) had been unsuccessful he proceeded to dissuade me from asking for major surgery by showing me the MRI scan of another patient whose spine was liberally studded with ghostly pins. The man's back had been unable to take the strain of linking these pinned vertebrae to the first 'good' vertebra in the lumbar region causing one of them to fracture. The man was now bent double when he walked.
'And your point is?' I wanted to ask.
Not that I was looking for major surgery but I did have a small speech prepared much of which had already been rendered pointless by his conclusion that there was nothing more he could do for me. He did offer to refer me to the pain clinic at the QEH and I hope for an early appointment but he otherwise intended to discharge me from his list.
Then I remembered part of the 'speech'. I wanted him to know that I had also experienced a change in the way I used my left arm (and not only my leg). I relayed some of the symptoms which threw him into some consternation as he had already intoned summary and final letters into his dictaphone.
'Have we scanned your upper back?'
We established that 'we' hadn't. So that's how I came to be in the MRI room, renewing my relationship with the guardians of the scanner. There is obviously a powerful attraction there.
Next, I thought it best to establish that this new ROH scanner (one of many that I've visited in the West Midlands!) was as I remembered, 'doughnut-shaped' -and reassuringly open on both sides. Her brow furrowed and she told me that though it was more capacious than the one in which I'd had my claustrophobic experience (see Thursday 16th June 2011 post) it was still of the 'tunnel' variety and that I would need to be taken fully into the scanner. This instantaneously squashed all ambition to amuse her. I could already sense a warm fluid rising through my trunk and limbs and the automatic intake of deeper breaths.
We agreed that I'd have a go.
Inside the tunnel I was focused on only one thing, the small mirror locked into place above my head and set at a forty-five degree angle so that I could see into the airy, life-enhancing and spacious room I had so recently entered. I had been assured that the procedure would take only fifteen-twenty minutes. I wasn't told, however, that, once inside the tunnel, you enter a 4th dimensional time-warp. This was the longest twenty minutes of my short life. Only the blurred sense of people in hospital uniforms pursuing their normal lives beyond the viewing window and my enhanced yogic breathing kept me from the hazardous cliff edge of panic. The headphones gurgled some baroque music, intermittently obliterated by the thunderous roar of the scanner that gave every impression of trying and failing, to reach a speed that would enable it to take off.
But, I hear you ask; 'How did you get to be in yet another scanner? Surely every part of your body is already, intimately known to modern science?'
Well, let me take you back to the last post - the one you, unkindly, thought would never end . If you recall I had mentioned then that my next appointment, in late January, was to be with the consultant at the ROH. I expressed the opinion then that I was so fed up with the neurological and mechanical discomfort in my back and leg that I was prepared to request a surgical procedure on my poor scoliotic spinal column.
The surgeon had other ideas.
I imagine that medics are taught that there are at least three sources of information that might help them diagnose a patient's condition; physical examination, technology-based testing (such as blood and urine samples, all manner of scans and 'oscopys') and finally, 'verbal feedback'. However, asking me questions about my back pain is something in which my consultant isn't particularly interested. He is a 'scan man'. He has looked at them before I enter his office and so knows what outcome he wants - and assisted by a personable, authoritative style he usually gets it.
Having established that the epidural (see 23rd November 2011) had been unsuccessful he proceeded to dissuade me from asking for major surgery by showing me the MRI scan of another patient whose spine was liberally studded with ghostly pins. The man's back had been unable to take the strain of linking these pinned vertebrae to the first 'good' vertebra in the lumbar region causing one of them to fracture. The man was now bent double when he walked.
'And your point is?' I wanted to ask.
Not that I was looking for major surgery but I did have a small speech prepared much of which had already been rendered pointless by his conclusion that there was nothing more he could do for me. He did offer to refer me to the pain clinic at the QEH and I hope for an early appointment but he otherwise intended to discharge me from his list.
Then I remembered part of the 'speech'. I wanted him to know that I had also experienced a change in the way I used my left arm (and not only my leg). I relayed some of the symptoms which threw him into some consternation as he had already intoned summary and final letters into his dictaphone.
'Have we scanned your upper back?'
We established that 'we' hadn't. So that's how I came to be in the MRI room, renewing my relationship with the guardians of the scanner. There is obviously a powerful attraction there.
Wednesday, 18 January 2012
Oscopy....shmoscopy.
Oscopy....shmoscopy..... I know an imminent medical indignity when I see one.
Just before Christmas I returned from a (very emotional) night out at the Birmingham Town Hall with some friends. We had been to a reading of 'A Christmas Carol' and were informed that Dickens himself had given the first public reading of his, now-famous, novel in the very same place more than 150 years earlier.
While at my friends' house I made a discovery when visiting 'the bathroom' - a pinkish hue to my pee - clinicians would term it haematuria.
After (only a little) procrastination this resulted in an email to my specialist nurse at the Queen Elizabeth Hospital, even though there was and has been, no recurrence. Time went by and I thought/hoped my email had disappeared into the cybervoid of the seasonal period.
Then a few days ago a letter arrived informing me that an appointment had been made for me to attend the urology clinic for an endoscopy in mid-February. Endoscopy, cystoscopy - let's be clear - this is all about pushing a lens into and up a particularly sensitive part of my anatomy. It's not that I'm against these 'invasive' procedures, it's just that I think they should be reserved for other people.
I've written to the specialist nurse making a generous offer. If she has other, more urgent, patients waiting for an appointment then I am willing to give up my place in the queue.
Well, it's worth a try.
Another letter arrived today. This was the copy of the radiologist's report from my last CT scan. As I promised to share the detail the following is a lightly-edited extract.
Previously documented lung nodules have either resolved or reduced in size: a 3mm nodule in the apical segment of the right lower lobe close to the mediastinum on the previous study is barely apparent; a nodule in the right middle lobe measuring 4mm now measures 2mm.
Just before Christmas I returned from a (very emotional) night out at the Birmingham Town Hall with some friends. We had been to a reading of 'A Christmas Carol' and were informed that Dickens himself had given the first public reading of his, now-famous, novel in the very same place more than 150 years earlier.
While at my friends' house I made a discovery when visiting 'the bathroom' - a pinkish hue to my pee - clinicians would term it haematuria.
After (only a little) procrastination this resulted in an email to my specialist nurse at the Queen Elizabeth Hospital, even though there was and has been, no recurrence. Time went by and I thought/hoped my email had disappeared into the cybervoid of the seasonal period.
Then a few days ago a letter arrived informing me that an appointment had been made for me to attend the urology clinic for an endoscopy in mid-February. Endoscopy, cystoscopy - let's be clear - this is all about pushing a lens into and up a particularly sensitive part of my anatomy. It's not that I'm against these 'invasive' procedures, it's just that I think they should be reserved for other people.
I've written to the specialist nurse making a generous offer. If she has other, more urgent, patients waiting for an appointment then I am willing to give up my place in the queue.
Well, it's worth a try.
Another letter arrived today. This was the copy of the radiologist's report from my last CT scan. As I promised to share the detail the following is a lightly-edited extract.
Previously documented lung nodules have either resolved or reduced in size: a 3mm nodule in the apical segment of the right lower lobe close to the mediastinum on the previous study is barely apparent; a nodule in the right middle lobe measuring 4mm now measures 2mm.
A nodule in the right lower lobe measures 5mm and has reduced from 8mm previously. More posteriorly in the right lower lobe the nodule has reduced from 13mm to 6mm. Other smaller nodules are no longer apparent, no new focal abnormality is seen in the lungs or mediastinum.
So, although there are one or two queries relating to a 'collection' outside the lungs and other matters, I'm sure you'll agree that this amounts to good news. It was puzzling to read in the conclusion that 'appearances are stable' when the body of the text suggests that it is so much better than that - but I guess this may fall within the range of what some have unfairly termed, my tendency to pedantry.
Next appointment (do try to stay awake!) is with the consultant at the Royal Orthopaedic Hospital next week. Forget what I wrote earlier, the continuing discomfort is such that I'm going to ask him to insert a steel rod into the scoliotic lumbar region of my spine and attach my poor degenerating vertebrae to it.
Thursday, 12 January 2012
Honey, I shrank (sic) the nodules.
We have just returned from the Queen Elizabeth Hospital and our consultation with the oncologist following the recent CT scan. The news is good. The scan gives evidence that the nodules - not sure of the precise number but about 5 or 6 - have shrunk. I have asked for a copy of the radiologist's report but it would appear that shrinkage is of the order of 30 - 60%. This puts me in the 40% bracket of those who have shrinkage, rather than the 40% who have no growth and the 20% for whom nodule growth continues.
So, I'm in the right group and will go forward to the next drug cycle that starts tomorrow. I'm pleased even though it probably will mean repeating the experience of plantar fasciitis - inflammation of the soles of the feet which makes walking (and standing) very painful after a short period. The approach however is to treat the side effect rather than reduce the dosage while there are evident clinical benefits to taking the drugs. If I can tolerate something like 6 cycles then I think they look to reduce the dosage.
The treatment for plantar fasciitis includes the use of Udderlysmooth - a cream developed for the inflamed udders and teats of dairy herds. Apparently, one of the constituents is urea - though I'm not sure who or what animal makes that particular contribution. I've just ordered some so I'll let you know as and when it is revealed.
If my mood is less than euphoric it is partly because the 'good news' was delivered in a 'tone' that was flat and inconsistent with the content, partly because of apprehension about the drug side effects but mostly because the consultant revisited the bald, stark and scary statistics about my condition.
For some reason he thought that we were a partnership that had opted not-to-know about the prognoses. When we assured him that this was not the case he furnished us with some dispiriting 'median survival periods' for those on Sunitinib.
But hey, I'm not the median man! I'm the guy with shrunken nodules and that's something joyous I could never have predicted saying, just one short year ago!!
So, I'm in the right group and will go forward to the next drug cycle that starts tomorrow. I'm pleased even though it probably will mean repeating the experience of plantar fasciitis - inflammation of the soles of the feet which makes walking (and standing) very painful after a short period. The approach however is to treat the side effect rather than reduce the dosage while there are evident clinical benefits to taking the drugs. If I can tolerate something like 6 cycles then I think they look to reduce the dosage.
The treatment for plantar fasciitis includes the use of Udderlysmooth - a cream developed for the inflamed udders and teats of dairy herds. Apparently, one of the constituents is urea - though I'm not sure who or what animal makes that particular contribution. I've just ordered some so I'll let you know as and when it is revealed.
If my mood is less than euphoric it is partly because the 'good news' was delivered in a 'tone' that was flat and inconsistent with the content, partly because of apprehension about the drug side effects but mostly because the consultant revisited the bald, stark and scary statistics about my condition.
For some reason he thought that we were a partnership that had opted not-to-know about the prognoses. When we assured him that this was not the case he furnished us with some dispiriting 'median survival periods' for those on Sunitinib.
But hey, I'm not the median man! I'm the guy with shrunken nodules and that's something joyous I could never have predicted saying, just one short year ago!!
Monday, 9 January 2012
I'm back - again.
It has been a long time I know - but I'm back and I'll try to explain..........
A part of the explanation has to do with the events of mid-December. I wrote a blog about it at the time entitled, 'Dark days, 'crab years.'' and posted it shortly thereafter. I decided to take it down a day or so later having reconsidered the appropriateness of some of the material. I am re-posting a part of it (see below) and you may well be able to imagine something of that which I have excised.
Some of you will know that the 'crab years' began for us not with the diagnosis of my condition last May, but nearly five years earlier when Diana was told that she had breast cancer. So, a few days ago, after her 'final' follow-up mammogram of the week before, she attended her 'signing-off' consultation at the Women's Hospital. Every check-up since her mastectomy has resulted in an 'all clear'; this one did not. She was told that the mammogram had revealed a possible DCSI ( Ductal Carcinoma In Situ). This means she may have a cancerous condition which might also require a lumpectomy with radiotherapy follow-up. So there will be another biopsy and given previous experience, the prospect of further treatment.
There are times when I, when we, ask, 'Why us?' Everyone in our or a similar position must ask the same question. There are science-based answers concerning factors with which particular cancers are linked. An obvious one is smoking and lung cancer but the linkage is much less clear with other conditions. Anyway, I'm not sure that the 'science answer' is what I and perhaps others, are ultimately seeking. The question is more of a desperate, confused and uncomprehending plea for someone to make sense out of the chaos. Even a consultant surgeon can't offer the answer to that. In the absence of a belief in God we must find our own sense - though I know that we are not alone in this.
A part of the answer has sometimes been 'Why not us?' We are no more 'special' or 'insulated' from personal crisis than anyone else. Another part has to do with the learning that comes from confronting circumstances such as these, that there is something precious in discovering the uncertainty, the fragility, the transient nature of being alive.
I try to keep such thoughts in mind.
The date for the follow-up consultation after the biopsies (not biopsy, as it transpired) was the 28th December. This meant that we had to contain our anxiety through a good portion of the seasonal events. It helped of course that we had grandchildren-sized distractions but Diana had, nether the less, plenty of time to prepare herself for the worst.
We went to the Women's Hospital together and sat in the very same places, in the same room that we had sat in five years earlier when the consultant had begun with the words, 'Unfortunately, it's not good news...........'. I lost the rest of what he had to say in a miasma of slow-motion shock and confusion. This time, as before, another consultant came straight to the point. I can't recall the words, I was too busy preparing myself for listening, for the portentous moment. Through the fog, I became aware of the smile in Diana's words and the delight in the squeeze she was transmitting through her hand to my hand. She was clear. The biopsies revealed nothing more than 'normal calcification' occurring in a proportion of women over the age of 50.
Most of you know all this by now - but not all. It was a great end to a difficult year.
A day later we were back at the QEH for my end-of-3rd-cycle CT scan. This was the scan that should tell the oncologist what impact the 'chemo-type' drugs have been having. The final few days of the 3rd drug cycle had been difficult because of the onset of 'sore feet syndrome'. This had made walking, for anything but a short distance, too painful.
The results of the scan are due in a couple of days. I'm hoping for good news and know that a lot of people are with me - including, I'm sure, the un-named person, who called me on the phone the other day to enquire after my health.
"Rod," he said. "How are you?"
"I'm ok," I replied before adding, "but I have been better."
"Look," he advised "you've got to stay positive. Things could be worse...."
"I'm sure you're right.'
"Of course things could be worse - look, for a start - it could have been me!"
That triggered the best, full-throated laugh that I have enjoyed for a very long time! You would have to know the person.......
A part of the explanation has to do with the events of mid-December. I wrote a blog about it at the time entitled, 'Dark days, 'crab years.'' and posted it shortly thereafter. I decided to take it down a day or so later having reconsidered the appropriateness of some of the material. I am re-posting a part of it (see below) and you may well be able to imagine something of that which I have excised.
Some of you will know that the 'crab years' began for us not with the diagnosis of my condition last May, but nearly five years earlier when Diana was told that she had breast cancer. So, a few days ago, after her 'final' follow-up mammogram of the week before, she attended her 'signing-off' consultation at the Women's Hospital. Every check-up since her mastectomy has resulted in an 'all clear'; this one did not. She was told that the mammogram had revealed a possible DCSI ( Ductal Carcinoma In Situ). This means she may have a cancerous condition which might also require a lumpectomy with radiotherapy follow-up. So there will be another biopsy and given previous experience, the prospect of further treatment.
There are times when I, when we, ask, 'Why us?' Everyone in our or a similar position must ask the same question. There are science-based answers concerning factors with which particular cancers are linked. An obvious one is smoking and lung cancer but the linkage is much less clear with other conditions. Anyway, I'm not sure that the 'science answer' is what I and perhaps others, are ultimately seeking. The question is more of a desperate, confused and uncomprehending plea for someone to make sense out of the chaos. Even a consultant surgeon can't offer the answer to that. In the absence of a belief in God we must find our own sense - though I know that we are not alone in this.
A part of the answer has sometimes been 'Why not us?' We are no more 'special' or 'insulated' from personal crisis than anyone else. Another part has to do with the learning that comes from confronting circumstances such as these, that there is something precious in discovering the uncertainty, the fragility, the transient nature of being alive.
I try to keep such thoughts in mind.
The date for the follow-up consultation after the biopsies (not biopsy, as it transpired) was the 28th December. This meant that we had to contain our anxiety through a good portion of the seasonal events. It helped of course that we had grandchildren-sized distractions but Diana had, nether the less, plenty of time to prepare herself for the worst.
We went to the Women's Hospital together and sat in the very same places, in the same room that we had sat in five years earlier when the consultant had begun with the words, 'Unfortunately, it's not good news...........'. I lost the rest of what he had to say in a miasma of slow-motion shock and confusion. This time, as before, another consultant came straight to the point. I can't recall the words, I was too busy preparing myself for listening, for the portentous moment. Through the fog, I became aware of the smile in Diana's words and the delight in the squeeze she was transmitting through her hand to my hand. She was clear. The biopsies revealed nothing more than 'normal calcification' occurring in a proportion of women over the age of 50.
Most of you know all this by now - but not all. It was a great end to a difficult year.
A day later we were back at the QEH for my end-of-3rd-cycle CT scan. This was the scan that should tell the oncologist what impact the 'chemo-type' drugs have been having. The final few days of the 3rd drug cycle had been difficult because of the onset of 'sore feet syndrome'. This had made walking, for anything but a short distance, too painful.
The results of the scan are due in a couple of days. I'm hoping for good news and know that a lot of people are with me - including, I'm sure, the un-named person, who called me on the phone the other day to enquire after my health.
"Rod," he said. "How are you?"
"I'm ok," I replied before adding, "but I have been better."
"Look," he advised "you've got to stay positive. Things could be worse...."
"I'm sure you're right.'
"Of course things could be worse - look, for a start - it could have been me!"
That triggered the best, full-throated laugh that I have enjoyed for a very long time! You would have to know the person.......
Sunday, 4 December 2011
A few observations.
I think that I may need to review the 'tea-lady hypothesis' (see 14th November post) because yesterday I was not only called into my appointment 30 minutes early but into the office of the 'main man', my QEH consultant oncologist. Now, he is a genuinely approachable, personable and unassuming guy but in view of my earlier theorising I wasn't sure that my 'promotion' meant good news. However, after a discussion about my blood pressure readings (again presented by me as though from one health professional to another) in which he assured me that the numbers were within the acceptable range (our exchange was probably a little too technical for a lay audience, so I'll spare you the detail) I asked him 'How do you think I'm doing?
I'm aware that this it the same question I asked of the pharmacist and specialist nurse three weeks ago but it seemed to me that there's no harm in a little bit of clinical triangulation. Anyway, the answer was again encouraging . He stated that until recently all patients, in the country, receiving my drug, Sunitinib, came through him in Birmingham. From his research on the total of nearly 200 some 60% fail to reach the end of cycle 2 without experiencing side effects that either result in a reduction of dosage (with implications for efficacy) or transfer to another treatment programme.
So, we (i.e. Diana and myself) agreed that was good news. I asked whether the research had been published but apparently it has yet to be written up (I'm just wondering whether I'll be cited as one of the team?) Suffice it to say, my 'tea-lady hypothesis' is now being amended to accommodate the 'Research Collaboration Variation' which explains exceptions such as that occurring yesterday.
Cycle 3 has begun; day 3/28
A change of tone.............
Yesterday I had further communication from my German friend, Gerd (you can read it under 'comments' for the last post, 23rd November). He writes about the 'narrow bridge' or wafer-thin divide that exists for all us between having and not-having, a life-threatening condition like cancer. He also writes that he admires or 'adores' my writing of this blog with its 'self-ironical' style. I therefore suspect or hope that the passage above would also find favour with him - and perhaps others.
But there is a wafer-thin divide for me too; between the chatty, light-hearted, 'self ironical' style that I have learned to adopt and something darker, much more bleak. It is as thin as a radiogist's film image, as brief as the time it takes to say 'More bad news I'm afraid', as evanescent as a phone call....... and I know that I'll be lost in a windswept denuded landscape, an arctic tundra, a lone figure for thousands of square miles..................
But I'm sure that you probably already knew that.
On the subject of tundra, I spent Tuesday of last week with Dave at Slimbridge WWT, watching wildfowl (ducks, geese and waders) and swans, recently arrived from the far north. Although I understand the popular, all-year, zoo-appeal of flamingoes and other captive exotics from around the world, I'm not too sure that they 'fit' with the birding ethic of studying wild birds within their natural habitats.
After a chilly afternoon spent observing birds from various hides positioned above and alongside the fields, creeks and lakes beside the Severn estuary we ended the day in paradise; in a heated hide with comfortable seating and huge picture windows giving stunning views of thousands of ducks, geese and Bewick swans at feeding time. ('So much for the 'birding ethic'!', I think I hear you say.)
The other highlight from the visit was avidly observing, in its natural habitat, the lesser-spotted TV celebrity, Kate Humble (from BBC Springwatch, Autumnwatch and other programmes). I studied her behaviour for some time within a small flock of males.
I thought it inappropriate however, to make use of my binoculars given that we were separated by only a few empty tables in the restaurant.
I'm aware that this it the same question I asked of the pharmacist and specialist nurse three weeks ago but it seemed to me that there's no harm in a little bit of clinical triangulation. Anyway, the answer was again encouraging . He stated that until recently all patients, in the country, receiving my drug, Sunitinib, came through him in Birmingham. From his research on the total of nearly 200 some 60% fail to reach the end of cycle 2 without experiencing side effects that either result in a reduction of dosage (with implications for efficacy) or transfer to another treatment programme.
So, we (i.e. Diana and myself) agreed that was good news. I asked whether the research had been published but apparently it has yet to be written up (I'm just wondering whether I'll be cited as one of the team?) Suffice it to say, my 'tea-lady hypothesis' is now being amended to accommodate the 'Research Collaboration Variation' which explains exceptions such as that occurring yesterday.
Cycle 3 has begun; day 3/28
A change of tone.............
Yesterday I had further communication from my German friend, Gerd (you can read it under 'comments' for the last post, 23rd November). He writes about the 'narrow bridge' or wafer-thin divide that exists for all us between having and not-having, a life-threatening condition like cancer. He also writes that he admires or 'adores' my writing of this blog with its 'self-ironical' style. I therefore suspect or hope that the passage above would also find favour with him - and perhaps others.
But there is a wafer-thin divide for me too; between the chatty, light-hearted, 'self ironical' style that I have learned to adopt and something darker, much more bleak. It is as thin as a radiogist's film image, as brief as the time it takes to say 'More bad news I'm afraid', as evanescent as a phone call....... and I know that I'll be lost in a windswept denuded landscape, an arctic tundra, a lone figure for thousands of square miles..................
But I'm sure that you probably already knew that.
On the subject of tundra, I spent Tuesday of last week with Dave at Slimbridge WWT, watching wildfowl (ducks, geese and waders) and swans, recently arrived from the far north. Although I understand the popular, all-year, zoo-appeal of flamingoes and other captive exotics from around the world, I'm not too sure that they 'fit' with the birding ethic of studying wild birds within their natural habitats.
After a chilly afternoon spent observing birds from various hides positioned above and alongside the fields, creeks and lakes beside the Severn estuary we ended the day in paradise; in a heated hide with comfortable seating and huge picture windows giving stunning views of thousands of ducks, geese and Bewick swans at feeding time. ('So much for the 'birding ethic'!', I think I hear you say.)
The other highlight from the visit was avidly observing, in its natural habitat, the lesser-spotted TV celebrity, Kate Humble (from BBC Springwatch, Autumnwatch and other programmes). I studied her behaviour for some time within a small flock of males.
I thought it inappropriate however, to make use of my binoculars given that we were separated by only a few empty tables in the restaurant.
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