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..............

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.............

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.

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.

Those blue-remembered hills

Is there anybody still out there? I could hardly blame you for losing interest and taking up daytime television watching instead............ but do let me know if you are still reading.

So what's been happening?

Well, it's more a case of what is about to happen. On Thursday (8th September) I have another appointment with the oncologist to discuss the next steps in the treatment programme. For some reason they want to distinguish between the drug therapy that I'm due to receive and the term, chemotherapy. Mine is called targeted therapy, the generic drug treatment is Sutent and the specific drug I'm due to receive, Sunitinib. (There's an article waiting to be written on the origin of drug names).

Well that's what I was told a few weeks ago. They may change their minds because last week I went for another CT scan so they could have an up to date picture on how the disease is 'progressing'. This new info could be critical. So this is scary stuff. Wish me luck. Some have said they are praying, some are crossing their phalanges - I'm more than happy to accept all and any offers.

Meanwhile my physical recovery from the operation continues. Claire has gone home now, with Amichai and the kids, to witness the ravages of hurricane Irene. Fortunately no damage had been caused to their house in Morristown, New Jersey, but the power was out for a few days.So, though I may no longer have my personal trainer to assist me I still have her exercise and stretches programmes to follow.

In order to feel better about being less than perfect with the exercise and stretches regime, I also go walking. It seems to be the one thing that I can do to build my fitness that doesn't cause problems with the left leg. Last week I walked the first eight miles of the Worcestershire Way with my old friend Marian. The start/finish of the 33 miles route between Bewdley and Great Malvern runs past her front door.

That walk in last Friday's stunning weather was memorable. This part of Worcestershire is very hilly and scarcely-populated. We couldn't see our ultimate destination, the whale-backed Malverns, because the Abberley Hills dominated the greeny-blue horizon. I can recommend the experience to anyone.

By the time we reached Shavers End Quarry, disused but taking a large visible bite out of the forested hills, I was pretty tired. This was my most sustained period of exercise since the op. Marian and I are due to recommence the walk this Wednesday (7th September), weather permitting. If anyone else within hailing distance wants to join us they would be more than welcome - just get in touch and I'll relay the details.

I intend to post details of the meeting with the oncologist as soon as I can. And if you can't be a Deist, try to be a Phalangist.

pT3aNxM1; Fuhrman Grade 4

It's been another lengthy interval since my last post. My old friend Gerhard from the beautiful city of Heidelberg asks whether my feelings about the blog have changed. It's not that I've lost interest or questioned its usefulness. The reason for the 'silence'  has everything to do with the ongoing discomfort/pain I continue to experience when I sit for any length of time.

So the update on my condition is a mixed one. I continue to make progress in terms of the wound and the surgery but the leg/back sciatica-type pain persists and sometimes causes despair.

I have had two recent consultations at the Queen Elizabeth Hospital; the first with the urology surgeon, Mr Patel, who expressed some justifiable pride on examining my scar. He gave us the mathematical expression in the title. Succinctly it means that I have renal cell carcinoma (RCC); p stands for pathology (the condition of the organ), T3a means 'the cancer extends into the renal vein or the fat around the kidneys but not the fibrous tissues (Gerota's fascia)', Nx means that the lymph nodes were not examined (unnecessary as they already  knew that cancer had spread which is what the M1 denotes, M meaning metastases.)

Fuhrman grade 4 means that the cancer is aggressive, 4 being the highest grading.

So, that didn't appear so good........ we didn't stay long. Some weeks ago we had taken out membership of the University of Birmingham's, Winterbourne Gardens, which lie close by. It has become our custom after every hospital visit to spend some 'recovery' time amid the trees and flowers. We drove there directly.

The follow-up meeting with the oncologist took place two days later. We had more time with Doctor Karina to talk through the treatment programme that would now follow from the histology results. She had some further bad news when she explained that the metastases had spread to both lungs and numbered 4 or 5, rather than 2, as we had been previously informed.

However she was upbeat about my longevity - though there are of course no guarantees. She explained that aggressive RCC responds well to the oral medication I would start in a few weeks time. She also added that this was a drug I would be on for the remainder of my life. The cancer would eventually find a way 'round' the medication; the treatment was palliative and not a cure.

I have another CT scan in a couple of weeks and the drug treatment commences a few weeks later - the delay is to give my body a chance to recover from the surgery.

Meanwhile these damn back/leg symptons continue - I have been re-referred to the Royal Orthopaedic Hospital and see the consultant in October. I'm still being 'twin tracked' though Dr Karina has raised a new linkage possibility - that the neurological condition stems from some, as yet undiscovered, tumour.

I've more than used up my tolerance-at-the-computer time and your capacity to absorb medical information.

I hope to blog more discursively in the near future................

The week of widening circles

This has been a week in which many of the footholds, along the rocky road to recovery, have proved to be pretty secure.

Following deliverance from the dreaded d and v I have spent much time during the last week in the company of Diana. At the start we ventured forth in my second post-operative car journey. Suffice it to say it proved to be a case of my wound having healed somewhat - or Di's driving technique having improved since the day of discharge nearly two weeks earlier. We visited two country parks and completed two modest walks all the while ensuring that we were never too far from my new favourite permitted food - ice lollies.

The second walk was interrupted by an elderly gent with a walking stick who made some jocular reference to the speed at which I was walking. I resisted the temptation to trump his witticism with a flash of my 40cm scar.

The following day we made a trip to the new sushi bar in Touchwood - expensive and exhausting - but then, to be fair, I have always found visits to any shopping mall exhausting (and expensive), so little can be deduced concerning my physical recovery.

On Thursday we went even further, an hour's drive into the Northamptonshire countryside. Di's sister, Liz, lives in the hamlet of Sulby, near Welford and while the two of them went for a coffee and window-shop in Market Harborough, I was deposited into the safe hands of Alison, guardian of the magical Sulby Gardens. Alison's nine acres are devoted to the provision of a refuge for local wildlife. The gardens thrum to the rhythm of nature's families - flower, insect, fish, bird, mammal. That day's highlights included the sighting of slow worms, a grass snake, numerous tench and rudd, a couple of the 15 or so species of dragonfly that inhabit the numerous ponds and the identification of various hoverflies in one of the wildflower meadows.

The week ended with a visit to the Eye Clinic, currently at Selly Oak but soon to transfer to the QEH site. An examination by the consultant concluded that the retinal haemorrhage in my right eye was still visible but 'calming down' and that I would continue to be monitored without treatment. Everything depends on ensuring that my blood pressure remained reasonably low. I asked for a signed letter stating that everyone has to be nice to me and ensure that I am subjected to no undue stresses.