It's been a busy time since I last blogged.
My NHS career has been going from strength to strength and for a period last week I was working at it pretty much full time. It can't be long now before I have my own parking space and possibly a desk with a laptop and phone. Thank goodness I decided to give up my earlier career in Education when I did.
On Wednesday, I saw the consultant ophthalmologist who examined my right eye for developments in the small haemorrhage and 'cotton wool spot' referred to in an earlier post. To my relief she announced, after a lengthy period spent following her instruction to look directly at her earlobe while she, at intimately close quarters, shone a light into my eye, that she could no longer find the offending areas. My eye had healed itself.
On leaving the hospital we drove to visit Judith and Gethin in the South Derbyshire village of Ticknall. After a late lunch we walked in the grounds of Calke Abbey. There are oak trees in the ancient woodland of this National Trust property that are as old as any in Europe. They are truly stupendous. The trunks of these trees are a frozen symphony of timber and deeply fissured bark. Massive burls swell like outsize, solid boils on the trunks or boles that are, in some places, hollow and rotted. Yet the trees still generate new growth of twig and leaf among the dried stag's horn branches. The wreathing embodiment of time, some have existed since before the Norman conquest. They were here long before any of us and will outlive us too.
The following day I had two appointments.
In the morning we spoke to a member of the consultant oncologist's team. After some discussion about my blood pressure - which centred on the data I proudly presented from readings on my domestic monitor - she was satisfied that I was ready to start my second 'chemo' cycle.
There was some concern about the level of my white blood cells but another sample taken from my, by now almost empty arm confirmed that the count was headed in the right direction. At the time of writing I am on day 3 of 28.
There was time then for an interval before my afternoon appointment at the Royal Orthopaedic Hospital. We went first to the Barber Institute on the campus of the University of Birmingham. There is, if you were not already aware, some wonderful art within this impressive 1930s building. We were fortunate enough to join a lunch-time talk given by the gallery's director of education on Anthony van Dyck's, Ecce Homo. You may not recognise the name but you probably do know the image; a powerful version of a nearly-naked and bound Jesus mocked by a Roman soldier who is placing a cape around the tormented 'King of the Jews'. The painting may be striking but it is also disturbing in that the soldier is black and his association with the malign darkness that contrasts with Jesus's luminous skin says something about contemporary attitudes to issues of race and ethnicity. For this reason it had been highlighted as the gallery's contribution to Black History Month.
We had lunch at Winterbourne before heading up the Bristol Road.
The new self-check in systems at both the QE and the ROH work very well and before long we were being warmly greeted by the consultant orthopaedic surgeon, Mr Ishaque. He showed us some images from the recent MRI and Xray. He said that these images indicated that the fatty sheath that surrounds the nerve in the spinal column was missing at one point in the lumbar region. The cause was the irregular shape of my lower spine. The images are disturbing but he also appeared to be confirming that there was no link between the kidney cancer and the back/leg pain - which was good news.
The other good news was that the diagnosis (very similar to that made by the ROH physio a year ago) led on very quickly to a treatment procedure; an injection of steroids into two sites close to the 'squeezed' nerve. These injections may help to reduce pain in the short term and through reducing inflammation in the affected area, in the longer term as well.
There are of course no guarantees and I will have to wait at least 4 - 6 weeks.
However, I now feel better for having a diagnosis, relief that the cause is not an unidentified secondary tumour and reassured that I am 'in treatment' rather than waiting, waiting, waiting.
So, it has been a significant week; in part, luminous, in part, disturbing, in part - a walk in the park.
Sunday, 23 October 2011
Monday, 17 October 2011
Who is the Bonjela fairy?
Gerd is asking more questions. This time they concern the ways in which my illness has impacted on my thinking about the spiritual world.
But on second thoughts perhaps it isn't about that at all.
Perhaps it's more about the way in which when someone has cancer, a life-threatening illness, and has signalled a willingness to speak of it, this enables the asking of questions that concern each of us the most. Gerd has already said something like this when he comments on the way my blog has been of some use to him in exploring how he might face a similar circumstance (he has had a recent 'health scare'). All of you, of a certain age, have to live with the possibility that it might strike you as well. If we haven't had cancer or aren't currently living with cancer - I guess we are preparing for the possibility of getting it.
So, I accept that it is important to ask these questions and I'm happy to play a small part in enabling this kind of reflection but I suspect that the real answers lie within each of us.
For what it is worth, my thinking about matters spiritual hasn't changed since learning that I have advanced kidney cancer. I have written in an earlier blog that I have experienced a re-ordering of priorities but if this involves anything spiritual (such as a keener sense of being part of the natural world) I guess that the seeds of it were always there, B.C.
Meanwhile I am more than happy to be in receipt of people's prayers. It is important to be 'held in mind', however that is expressed.
Someone, for example, thought about me recently in a very practical manner. He or she posted a carton containing fluid for treating mouth ulcers through our front door. I have tried to discover who this 'Bonjela fairy' might be, but have failed. If you are that person I would like to register my thanks.
Thanks too, to Marian and Diana for walking with me last Friday on the final 8 or 9 mile section of the Worcestershire Way. We started in the village of Longley Green and finished in the Victorian spa town of Great Malvern. In stunning sunlight we crossed yet another ridge (see earlier posts), entered a long valley carpeted with apple and pear orchards before ascending (in my case, with great difficulty) the flanks of the Worcestershire Beacon on the, largely treeless, Malvern Hills. We looked down on the Severn plain, the distant Cotswolds and the town climbing the lower slopes beneath us.
We finally felt compelled to descend to find a cup of tea and to then catch the train to Kidderminster where our chauffeur, John, awaited our arrival.
If there is a God he was with us on that memorable day.
But on second thoughts perhaps it isn't about that at all.
Perhaps it's more about the way in which when someone has cancer, a life-threatening illness, and has signalled a willingness to speak of it, this enables the asking of questions that concern each of us the most. Gerd has already said something like this when he comments on the way my blog has been of some use to him in exploring how he might face a similar circumstance (he has had a recent 'health scare'). All of you, of a certain age, have to live with the possibility that it might strike you as well. If we haven't had cancer or aren't currently living with cancer - I guess we are preparing for the possibility of getting it.
So, I accept that it is important to ask these questions and I'm happy to play a small part in enabling this kind of reflection but I suspect that the real answers lie within each of us.
For what it is worth, my thinking about matters spiritual hasn't changed since learning that I have advanced kidney cancer. I have written in an earlier blog that I have experienced a re-ordering of priorities but if this involves anything spiritual (such as a keener sense of being part of the natural world) I guess that the seeds of it were always there, B.C.
Meanwhile I am more than happy to be in receipt of people's prayers. It is important to be 'held in mind', however that is expressed.
Someone, for example, thought about me recently in a very practical manner. He or she posted a carton containing fluid for treating mouth ulcers through our front door. I have tried to discover who this 'Bonjela fairy' might be, but have failed. If you are that person I would like to register my thanks.
Thanks too, to Marian and Diana for walking with me last Friday on the final 8 or 9 mile section of the Worcestershire Way. We started in the village of Longley Green and finished in the Victorian spa town of Great Malvern. In stunning sunlight we crossed yet another ridge (see earlier posts), entered a long valley carpeted with apple and pear orchards before ascending (in my case, with great difficulty) the flanks of the Worcestershire Beacon on the, largely treeless, Malvern Hills. We looked down on the Severn plain, the distant Cotswolds and the town climbing the lower slopes beneath us.
We finally felt compelled to descend to find a cup of tea and to then catch the train to Kidderminster where our chauffeur, John, awaited our arrival.
If there is a God he was with us on that memorable day.
Thursday, 13 October 2011
Another day, another side effect
Imagine for a moment that it is Sunday lunchtime and instead of placing a small, entire, new potato into your mouth, you mistakenly push your fork into a live coal instead. As soon as the coal touches your lips and tongue you realise your error and desperately reach for a glass of water. This is akin to the sensation experienced by the small crop of ulcers I am growing inside my mouth. I've been swilling a lot of cold water recently, not to mention enjoying a suck-cession of lollipops.
These are another of the recognised side effects of the 'chemo'. The irony is that the onset of this problem occurred during the two week break between successive 28 day drug cycles. These ulcers are showing little sign of healing and my concern is that they are still around when I start the next cycle. Meanwhile eating; whether it be new potatoes or porridge, is proving to be an unpleasant experience - and as most of you will know, eating has long been a favourite hobby of mine.
To speak of happier times - I have been busy as well. Bodenham arboretum (near Kidderminster) with Kate and Leon on Sunday, Westonbirt arboretum (near Tetbury) with Mary and Pete on Monday and Upton Warren Nature Reserve (near Bromsgrove) with Dave for a few hours birding on Monday - autumnal compensations courtesy of the natural world.
Meanwhile Gerd continues to ask important, probing questions. He says that Steve Jobs was quoted on German radio as saying, "Cancer for me is a useful instrument to decide on the important things for my life". You can see that this is a re-translation, English to German to English - but the meaning is clear and Gerd asks whether it is the same for me.
The answer is a definite 'yes'. A pattern has emerged in terms of the things that are now more important; friends and family relationships and experiencing the natural world. I increasingly want to spend time visiting, talking, walking, birding, botanising. I want to know more about buildings, heritage and art as well. These interests were there before but perhaps more obscured by other 'wants'. I have less 'to do' but have never been busier.
But I don't exist in a constant state of minute-by-minute awareness of my mortality. Steve Jobs had perhaps a more aggressive and perilous cancer than mine. There is a struggle taking place between a heightened sense of living-in-the-moment and the resumption of a normal existence.
However, there are always plenty of reminders of the new realities I face - like painful ulcers in one of the most sensitive parts of the body - but when you are helped to identify a shoveler duck for the first time or see the delicate, rust-coloured foliage of a narrow-leafed (Raywood) ash, there is then an appreciation of beauty, complexity and depth - and a growing sense that because I can 'see' it, I am a part of it. This, for me, is a source of comfort.
These are another of the recognised side effects of the 'chemo'. The irony is that the onset of this problem occurred during the two week break between successive 28 day drug cycles. These ulcers are showing little sign of healing and my concern is that they are still around when I start the next cycle. Meanwhile eating; whether it be new potatoes or porridge, is proving to be an unpleasant experience - and as most of you will know, eating has long been a favourite hobby of mine.
To speak of happier times - I have been busy as well. Bodenham arboretum (near Kidderminster) with Kate and Leon on Sunday, Westonbirt arboretum (near Tetbury) with Mary and Pete on Monday and Upton Warren Nature Reserve (near Bromsgrove) with Dave for a few hours birding on Monday - autumnal compensations courtesy of the natural world.
Meanwhile Gerd continues to ask important, probing questions. He says that Steve Jobs was quoted on German radio as saying, "Cancer for me is a useful instrument to decide on the important things for my life". You can see that this is a re-translation, English to German to English - but the meaning is clear and Gerd asks whether it is the same for me.
The answer is a definite 'yes'. A pattern has emerged in terms of the things that are now more important; friends and family relationships and experiencing the natural world. I increasingly want to spend time visiting, talking, walking, birding, botanising. I want to know more about buildings, heritage and art as well. These interests were there before but perhaps more obscured by other 'wants'. I have less 'to do' but have never been busier.
But I don't exist in a constant state of minute-by-minute awareness of my mortality. Steve Jobs had perhaps a more aggressive and perilous cancer than mine. There is a struggle taking place between a heightened sense of living-in-the-moment and the resumption of a normal existence.
However, there are always plenty of reminders of the new realities I face - like painful ulcers in one of the most sensitive parts of the body - but when you are helped to identify a shoveler duck for the first time or see the delicate, rust-coloured foliage of a narrow-leafed (Raywood) ash, there is then an appreciation of beauty, complexity and depth - and a growing sense that because I can 'see' it, I am a part of it. This, for me, is a source of comfort.
Thursday, 6 October 2011
The following day, 28
Just back from the GPs. Within hours of yesterday's blog I had taken two late night readings of my blood pressure. I took two because the first was so horrendously above the diastolic alert figure that I was hoping a re-run would reveal the first to have been a gross anomaly. It didn't.
Last night I went to bed wondering whether I would wake with sight in only one eye.
As ever, I was being overly dramatic. A re-take of my bp in the morning was still high-ish and so, as advised by the oncologist, I contacted the GP surgery.........
The practice pharmacist looked at my listed readings over the last few weeks, took another reading and prescribed some anti hypertension medication.
'How long will I be on this?' I asked.
'For the rest of your life,' he replied.
Amlodipine reduces blood pressure by opening capillaries in the extremities. If I should get undue swelling in the hands and feet there are other drugs that can be prescribed; medication for the side effects of the side effects.
And only yesterday I thought I'd made it. Just goes to show..............
Last night I went to bed wondering whether I would wake with sight in only one eye.
As ever, I was being overly dramatic. A re-take of my bp in the morning was still high-ish and so, as advised by the oncologist, I contacted the GP surgery.........
The practice pharmacist looked at my listed readings over the last few weeks, took another reading and prescribed some anti hypertension medication.
'How long will I be on this?' I asked.
'For the rest of your life,' he replied.
Amlodipine reduces blood pressure by opening capillaries in the extremities. If I should get undue swelling in the hands and feet there are other drugs that can be prescribed; medication for the side effects of the side effects.
And only yesterday I thought I'd made it. Just goes to show..............
Wednesday, 5 October 2011
Day 27
Day 27 and tomorrow morning sees the last 'chemo-like' capsule (of this first cycle) slip down my throat. It seems to me a significant moment. As the days of this week have passed so the more consumed I have become with reaching this landmark moment. Perhaps this is all rather unnecessary. However, my blood pressure readings have climbed in recent days and have now reached the 'red zone' - anything above 160/100 according to the young oncologist I saw last week.
If day 28 passes without 'incident' I should hold a party.
From tomorrow I have a two week drug 'holiday'. Within this time I'm hoping that the side effects like the metallic taste, fatigue and raised bp will diminish. I'll let you know.
And coming up; the return to the Royal Orthopaedic Hospital and an appointment with the consultant I last saw just before my nephrectomy. A useful meeting which included first-time viewing of the alien invader sitting on my left kidney ended with him telling me that he was taking me off his list. The reasoning was that the impending operation would be likely to have an impact on the neurological problems with the back and leg. As regular readers of this blog will know, this did not come to pass. I'm fed up with the discomfort I experience even though the medication I take keeps it under some control - I hope for some further intervention.
I recall that when the ROH first diagnosed the cause of my back/leg problems as a 'protruding disc' I shied away from the suggestion of a series of epidurals and if that didn't work, surgery. I opted to treat the condition, conservatively and went on to try yoga, osteopathy, physiotherapy. They didn't work. Now, I'd be more than happy with just about any treatment offered.
I'm not always like this - there are other things in my life. There are. Really.
Now let me think.............
If day 28 passes without 'incident' I should hold a party.
From tomorrow I have a two week drug 'holiday'. Within this time I'm hoping that the side effects like the metallic taste, fatigue and raised bp will diminish. I'll let you know.
And coming up; the return to the Royal Orthopaedic Hospital and an appointment with the consultant I last saw just before my nephrectomy. A useful meeting which included first-time viewing of the alien invader sitting on my left kidney ended with him telling me that he was taking me off his list. The reasoning was that the impending operation would be likely to have an impact on the neurological problems with the back and leg. As regular readers of this blog will know, this did not come to pass. I'm fed up with the discomfort I experience even though the medication I take keeps it under some control - I hope for some further intervention.
I recall that when the ROH first diagnosed the cause of my back/leg problems as a 'protruding disc' I shied away from the suggestion of a series of epidurals and if that didn't work, surgery. I opted to treat the condition, conservatively and went on to try yoga, osteopathy, physiotherapy. They didn't work. Now, I'd be more than happy with just about any treatment offered.
I'm not always like this - there are other things in my life. There are. Really.
Now let me think.............
Monday, 26 September 2011
Day 18
Day 18 - except it isn't because you are unlikely to read this on Monday 26th September. But with that info you'll be able to work out the numbers. They said that the side effects would begin to kick in when I was through the first 14 or so days. They weren't wrong.
For a few days now I've been retiring to my bed like some frail consumptive from a Victorian novel. Ever since undertaking a ten mile walk along the Grand Union canal last Wednesday with some former work colleagues, I've been experiencing flu-like symptoms. Whether it was/is flu or not, I'm not sure but of the list of side effects I was warned to expect, fatigue, a strange chemical taste and a yellowing complexion are all now in evidence.
The odd thing is that although I know the drugs are responsible for these unpleasant changes there is absolutely no option but to continue to take the source - it seems very counter intuitive. Diana's take on this is to say that as I feel worse I can reassure myself that the drugs are working. I see her point but............
I'd like to add to my occasional list of ethereal experiences (see The Beauty in Brum, 13/7) the pleasure I derived from accessing Snow Hill Station at the end of our canal walk from Livery Street. Arriving on the elevated open platform (not the oppressive, gloomy area under the overhang) I was delighted by the opportunity it afforded to scan the city to the north and east and to watch the continual stream of traffic flowing up and down Great Charles Street/Queensway. In bright autumn sunlight I can recommend it - but it's always possible that you may need, first, to have your acuity sharpened by the onset of palliative care.
There have been other high-points. Stephen, soon to reach the age of 36 years (for those of you who remember the light-haired 3 year old in his John Lennon NHS specs) flew in from the States for a week' stay . He left yesterday. The idea had been that I would drive him to Heathrow but given my return to bed, it didn't seem like such a good idea by Saturday afternoon.
My friend Gerd, asks if my positive approach, from his reading of the blog, is a true reflection of my feelings. It's a good question. The answer is, 'not really'. I write for the person who's face I cannot see and who may not wish to read of sadness and despair.
There's one thing about which I will admit to feeling sad; the fact that my longstanding allotment buddy, Geoff, has also been diagnosed with cancer and it appears (though this awaits confirmation) that the primary tumour is in the kidney. I'm not saying I'm more upset by his experience than my own - but the one opens a tap to the other. Bear us both in your best wishes and prayers. There is still more to come before this blog is done.
For a few days now I've been retiring to my bed like some frail consumptive from a Victorian novel. Ever since undertaking a ten mile walk along the Grand Union canal last Wednesday with some former work colleagues, I've been experiencing flu-like symptoms. Whether it was/is flu or not, I'm not sure but of the list of side effects I was warned to expect, fatigue, a strange chemical taste and a yellowing complexion are all now in evidence.
The odd thing is that although I know the drugs are responsible for these unpleasant changes there is absolutely no option but to continue to take the source - it seems very counter intuitive. Diana's take on this is to say that as I feel worse I can reassure myself that the drugs are working. I see her point but............
I'd like to add to my occasional list of ethereal experiences (see The Beauty in Brum, 13/7) the pleasure I derived from accessing Snow Hill Station at the end of our canal walk from Livery Street. Arriving on the elevated open platform (not the oppressive, gloomy area under the overhang) I was delighted by the opportunity it afforded to scan the city to the north and east and to watch the continual stream of traffic flowing up and down Great Charles Street/Queensway. In bright autumn sunlight I can recommend it - but it's always possible that you may need, first, to have your acuity sharpened by the onset of palliative care.
There have been other high-points. Stephen, soon to reach the age of 36 years (for those of you who remember the light-haired 3 year old in his John Lennon NHS specs) flew in from the States for a week' stay . He left yesterday. The idea had been that I would drive him to Heathrow but given my return to bed, it didn't seem like such a good idea by Saturday afternoon.
My friend Gerd, asks if my positive approach, from his reading of the blog, is a true reflection of my feelings. It's a good question. The answer is, 'not really'. I write for the person who's face I cannot see and who may not wish to read of sadness and despair.
There's one thing about which I will admit to feeling sad; the fact that my longstanding allotment buddy, Geoff, has also been diagnosed with cancer and it appears (though this awaits confirmation) that the primary tumour is in the kidney. I'm not saying I'm more upset by his experience than my own - but the one opens a tap to the other. Bear us both in your best wishes and prayers. There is still more to come before this blog is done.
Monday, 12 September 2011
Side effects
Well, we had the the meeting with the oncologist at the Queen Elizabeth Hospital (that's Queen Elizabeth II's mother not the current queen - only discovered this fascinating fact when I was prowling the corridors looking for a shop. It makes sense. The original buildings look to be 1930s so the naming no doubt goes back to that pre-coronation time).
As assumed, the thrust of the consultation was that I was advised to start the targeted drug therapy but I hadn't anticipated that they would suggest that I did so immediately. I had been hoping that they would tell us the findings of a detailed comparison of the pre and post op CT (soft tissue) scans as far as the lungs were concerned. That didn't happen. For the oncologists the baseline scan is the first post op and for that reason perhaps (?) they had not prioritised the comparison with the first. We were given some vague reassurances that the 'nodules' (new word) had not increased but this appeared to be contradicted by some other info they gave us which suggested they had increased in size (and quite considerably).
This is the world I get into. What are they saying? What does it mean? What are they not saying and what does that mean?
I think one thing is clear - as far as they are concerned the important comparison is between the baseline (first post-op) scan and the next which will be in a few months time when I am well into the treatment.
So far, so good, with the drugs. A 50 mg capsule of Sunitinib each morning slips down easily. Today is day 4 of 28 and then I take two weeks off before starting the cycle again and so on and so on until and unless the scans reveal that there is little or no clinical benefit from the treatment or I get a transfer to that well-stocked pharmacy in the sky..........
We were given an account of possible side effects. The list grows every time someone goes through them with us. I, of course, assume that I will have all of them; nosebleeds, diarrhoea, nausea, mouth ulcers, face rash, skin problems with palms and soles of feet, yellowing of skin, fatigue, high blood pressure etc etc etc. I may become unrecognisable!
At the moment, I'm fine but the cumulative effects are most likely to emerge in weeks 3 and 4.
Given that this therapy is very expensive (figures vary but I'll post definitive info when I get it) I was interested in what assurances I could be given that the Q E H Trust would continue to fund it indefinitely. It felt like I might have hurt their feelings from the reaction I got. There was no question - 'the drugs are NICE approved', 'as long as there were clinical benefits..................' - but I'm thinking about austerity and its side effects.
Tomorrow I join Marian in Bewdley for part 3 of our Worcestershire Way walk; from the village of Martley to Longley Green. Part 2, Shaver's End quarry to Martley, took us over a number of wooded ridges giving us some further majestic views over the English countryside. We plundered the wayside trees for damsons, apples and pears. Though we consumed our backpack victuals both of us had more weight to carry at the end that we did at the start. Neither of us felt hungry when we reached our rendezvous point.
I look forward to further adventures.................and their side effects, possibly.
As assumed, the thrust of the consultation was that I was advised to start the targeted drug therapy but I hadn't anticipated that they would suggest that I did so immediately. I had been hoping that they would tell us the findings of a detailed comparison of the pre and post op CT (soft tissue) scans as far as the lungs were concerned. That didn't happen. For the oncologists the baseline scan is the first post op and for that reason perhaps (?) they had not prioritised the comparison with the first. We were given some vague reassurances that the 'nodules' (new word) had not increased but this appeared to be contradicted by some other info they gave us which suggested they had increased in size (and quite considerably).
This is the world I get into. What are they saying? What does it mean? What are they not saying and what does that mean?
I think one thing is clear - as far as they are concerned the important comparison is between the baseline (first post-op) scan and the next which will be in a few months time when I am well into the treatment.
So far, so good, with the drugs. A 50 mg capsule of Sunitinib each morning slips down easily. Today is day 4 of 28 and then I take two weeks off before starting the cycle again and so on and so on until and unless the scans reveal that there is little or no clinical benefit from the treatment or I get a transfer to that well-stocked pharmacy in the sky..........
We were given an account of possible side effects. The list grows every time someone goes through them with us. I, of course, assume that I will have all of them; nosebleeds, diarrhoea, nausea, mouth ulcers, face rash, skin problems with palms and soles of feet, yellowing of skin, fatigue, high blood pressure etc etc etc. I may become unrecognisable!
At the moment, I'm fine but the cumulative effects are most likely to emerge in weeks 3 and 4.
Given that this therapy is very expensive (figures vary but I'll post definitive info when I get it) I was interested in what assurances I could be given that the Q E H Trust would continue to fund it indefinitely. It felt like I might have hurt their feelings from the reaction I got. There was no question - 'the drugs are NICE approved', 'as long as there were clinical benefits..................' - but I'm thinking about austerity and its side effects.
Tomorrow I join Marian in Bewdley for part 3 of our Worcestershire Way walk; from the village of Martley to Longley Green. Part 2, Shaver's End quarry to Martley, took us over a number of wooded ridges giving us some further majestic views over the English countryside. We plundered the wayside trees for damsons, apples and pears. Though we consumed our backpack victuals both of us had more weight to carry at the end that we did at the start. Neither of us felt hungry when we reached our rendezvous point.
I look forward to further adventures.................and their side effects, possibly.
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