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.

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.

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!!

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 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'.