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.

Another surgical procedure...............

Now, if you were paying attention earlier (and I could hardly blame you for losing the will to live, let alone for failing to pay attention) you'll know that I have two major conditions; advanced kidney cancer and sciatica/back pain. It was the search for the cause of the latter that led to the discovery of the former. Having been found, treatment for the cancer understandably assumed priority and the back pain went onto the 'back burner' ('back burner' - geddit?) So, with the cancer treatment now established as relatively routine it was time for the back to come to the fore ( Ta ra! - 'Oh well - please yourself.')

In terms of my day-to-day quality of life it is the back/leg condition that has the greater impact so I was pleased (as well as apprehensive) at the prospect of being re-admitted to hospital.

So, yesterday then I was back at the Royal Orthopaedic Hospital for an epidural procedure. As a good number of you will know this entails injections (of, in my case, steroids) into the base of the spine. After kitting me out with some very see-through, paper underpants and the usual operating gown that served to provide public display of the aforementioned underpants (together with their contents), they gave me a light general anaesthetic. For this reason I'm unable to tell you a great deal about that which occurred after I lay face down on a bed/table configured in such a manner as to give even greater prominence to my posterior. An oxygen mask was strapped to my head and I was asked to tell the anaesthetist when I felt myself going lightheaded.

I was still waiting to give him the signal when I woke up in the recovery ward. I spent an interesting hour there watching beds with their prone patients come and go. Eventually I heard a young nurse calling for 'Frederick' and guessed that this might have been me. We got to know each other well in the next three hours of bedrest that I was required to take under her, and Diana's, supervision. She is Filipino and hates GPs, dentists and hospitals unless attending as a professional. After a pleasant meal of chicken soup, chicken pasta and ice-cream (following the 'complications' arising from my last stay in hospital, I've given up asking for the meat-free, dairy-free diet. Do you know, I even suspect that the chicken wasn't organic?!) I settled in to a prolonged spate of txtng while Diana went to find a restaurant.

My three hours on the ward passed very quickly. The Filipino nurse's concern for my welfare, as well as a desired glimpse of my surgical underpants, led her to insist that I sit on the bed for several minutes before standing and 'making a twirl'. After some demurring on my part she insisted too that I had the porter take me out to the car park in a wheelchair (this is after I had dressed). It was a good decision as the pain in my back was returning.........

And it is now the day after and so far things are as they were. The anaestheic has worn off, the neurological pain in my left leg is still there, as is the mechanical pain in my lower back. They did say it could take several days........... I live in hope.

As for the ulcer, about which I blogged in the last post, I'm pleased and a little embarrassed to admit that it has disappeared almost as quickly as it arrived. Eight more days, chemo-free and I'm back onto the third cycle.

I know, you can hardly wait for me to blog about it.

End of day 27/28, second cycle

The night before the last tablet and I am awake at some unearthly hour, running the very tip of my tongue against the inside of my incisors. The sensation is as unmistakable as it is disappointing - a small ulcer - and just 24 hours from the drug summit and the exhilaration of the downslope!

Now in the last few days of the second 'chemo cycle'. I went to the Cancer Centre at the QEH last Thursday for my regular three weekly check-up and was seen by the specialist nurse and the pharmacist. I was pleased - on the principle that you are more likely to be on the schedule of those with the most elevated status when there is some perceived problem. So, my record of an early appointment with the oncology consultant, then with his registrar and now with the pharmacist could be viewed as a promising trend. I'm hoping that on my next visit I get to be seen by the tea-lady.

There was some concern, however, about my raised blood pressure and a suggested doubling of the hypertension medication but when I asked for feedback on my progress they were very positive.

And speaking of the positive - we've now been on our first proper holiday since the traumatic days of late spring. We spent three nights in the Lake District in a National Trust cottage little changed since the 1920s. Together with Di's sister, Liz, her husband Chris, Chloe their daughter and Mike, Chloe's partner, we explored the unbelievably perfect landscape around Great Langdale. One morning, rising before the others, I walked out onto the hillside and began to climb. After only a few hundred feet I was totally exhausted. Interested as I am in amateur dramatics, I decided this was a personal, portentous, watershed; those peaks of yesteryear would not be revisited; no more would I look down on the valleys, birds and diminutive lakes from some high mountain. I returned to the cottage, a chastened man of Wordsworthian proportions (we'd visited Dove cottage the previous day). After a breakfast that tasted of sawdust we commenced our excursion over Lingmoor Fell (no relation). A couple of, at times, admittedly very tough, hours later we stood on the top of Brown How; looking down on the valleys, birds and diminutive..........

I spoke to Claire the other day. Our conversation turned to the way she had responded to concerns for my health. She said that the time spent visiting us over the summer and reflecting on the circumstances since her return to the US had revealed an appreciation of the important things in life and a new directness in expressing herself. This realisation took me back to those earlier posts about the 'silver lining' and the Steve Jobs quotation - this experience is not confined to the 'patient' but is shared with those who are most closely connected. It felt like a significant moment.

As will be, I hope, the steroid injections I am due to have administered to my lumbar spine at the Royal Orthopaedic Hospital next week during my drug-free 'holiday'.

My NHS career

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.

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.

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.