Hip Op; music to my ears.

'If all parts of the system work smoothly, the [scan] results will be securely and digitally despatched to the ROH in time for the MDT meeting. Our hope is, that my case will be discussed and a date for surgery agreed and in the near future.'

The above is an extract from my previous post which told of my referral to the Royal Orthopaedic Hospital (ROH), nine days ago The decision then had been that the surgeon needed more scan information before the date for any hip operation could be set.

I am very pleased to report that the system DID work smoothly.

I went for that evening MRI scan at the Priory Hospital (Monday 23rd September) and their strategy of allowing me to enter the 'tunnel' feet-first left my rolled-back eyes with just enough of a view of the outside world to quieten my incipient claustrophobia. It was a close run thing but fifty minutes later I was safely disinterred. Nursing an emaciated credit card we left for home.

The transfer of the MRI images to the ROH evidently happened because the very next day (Tuesday lunchtime, 24th) I was phoned by another consultant who told me that my case had been discussed at the multidisciplinary team (MDT) meeting that morning. The very good news was that, in his view, a normal hip replacement would be possible as the femur below the head was cancer-free. He said that, given the urgency, I could expect to be operated on within a fortnight.

The following day (yesterday) the surgeon's secretary phoned to say that a date had been scheduled, next Monday (30th).

Buoyed by the news, we drove to Gethin and Judith's home in Ticknall, Derbyshire. They had researched a day trip that would take in a walk/wheelchair ride of the impressive Staunton Harold estate (recommended) and then a detour through the picturesque town of Melbourne. On crutches, I was able to gawp at the wonders of the the largely-Norman parish church which has ambitions to be a cathedral. It is an amazing place for those who love massive, Romanesque columns and zigzag patterned arches. As I now know, it is given top rating by Betjeman's Best British Churches.

We strolled/hobbled past the lake below the adjacent Melbourne Hall before returning to Brum and thereafter, bed - I haven't been out of it since as I ratchet up the practice regime for my 'confinement' next week.

I didn't think that I'd ever say that I was looking forward to a hip replacement operation but then again there are a lot of other equally outlandish statements that have escaped my lips over the last two and a half years.

Joe is making a flying visit from his current sojourn in the University of Ljubljana in Slovenia, so it's possible that he can be persuaded to pick up a keyboard and post the next post-op. bulletin?

Walking on eggshell.

A couple of days ago I posted an update on the Manchester debacle and my referral back to Brum. We were awaiting an appointment at the Royal Orthopaedic Hospital with a surgeon to discuss the treatment for a recently located metastasis in the head of my femur and the possible timing for surgery.

Well, the meeting took place on Tuesday, two days ago. I'm really not complaining but I think it helps to set the context for further decisions if I tell you that the out-patient clinic was very busy and we were just about the last to be seen, nearly three hours after our appointment time of 3.00pm. The registrar who greeted us was  initially trying to juggle images of my femur/hip area with medical reports, my case history and a mobile phone that regularly disturbed and distracted him. He explained that in addition to working in the clinic he was 'on call' for the wards and other enquiries.

We weren't sure whether to feel sorry for him or us.

Unsure as to the significance of the scan images he eventually asked the consultant for his opinion. A tall man, his cheerful and assertive handshake was matched by a prompt conclusion - further scans were needed to establish how far down the femur the cancer may have travelled. This could only be determined by another MRI. He was alarmingly clear that a large 'hole' was located in the head of the femur leaving an outer layer within the socket, 'eggshell thin'. This could be tackled straightforwardly by a full hip replacement - unless the length of the femur was compromised.

He asked his registrar to send an urgent MRI request to my oncologist. 'Urgent', we discovered meant within two weeks at the QEH or three at ROH. Both appeared ominously lengthy. Quite apart from the anxiety about the state of the femur and learning a date for surgery, the cancer clock was still ticking, some three months after my last chemo dosage.

The next day, as details of the likely wait unfolded we made a decision - one that I'm sure all our friends and family will understand - we would 'go private'. For £577 you can get a 'two-site' MRI scan at the Priory Hospital. There was just one slot before the next Multidisciplinary Team Meeting next Tuesday morning at the ROH, Monday evening. We briefly visited today, just to ensure that the scanner would not trigger my susceptibility to claustrophobia - even as my wallet experiences an unwelcome attack of agoraphobia.

If all parts of the system work smoothly, the results will be securely and digitally despatched to the ROH in time for the MDT meeting. Our hope is, that my case will be discussed and a date for surgery agreed and in the near future.

Meanwhile, we have had so many phone calls and visits from friends, there's been little time to enter a downward spiral - though having said that, there are still some slots between 3.00 - 5.00 a.m. that have yet to be filled.

There are sure to be more twists in this gripping/griping medical thriller - stay tuned.

To Manchester and back.

It's Sunday evening and I need to update this blog.

It's been a long time coming because the developments since my last post might be, euphemistically described as, unpromising. If you haven't heard the details, I will take you back to where I left off, blogwise, with a decision to be made about joining the immunotherapy programme at Manchester's Christie hospital. It was a no-brainer, I quickly said 'yes' though I'll admit to having some continuing anxieties about the side effects that might be expected.

However, I never started Manchester. My acceptance of a place prompted the organising of two pre-admission scans; one an echo-cardiogram to establish whether my heart could cope with the stress of the treatment and a new baseline CT against which future post-treatment cycles could be measured. I passed the first but failed the second.

But I need to rewind.....

Prior to these scans we had left Brum to start a ten-day holiday in Scotland, taking in stops in Boat of Garten, a cottage in the Torridon area and a Bank holiday weekend in Edinburgh. Before the trip North I had already begun to experience some pain in my left hip and this quickly worsened so that by the time we reached Torridon, I was pretty much confined to the bedroom apart from brief journeys out with the aid of a stick.

I was able to take some vicarious enjoyment from Joe's kayaking and walking trips but I was in truth, frightened about what might be happening and eager to get home. We left Joe in Edinburgh to visit some of the Festival Fringe events and once the Bank Holiday was over approached our GP surgery for help.

At the same time there were the scans to undergo. A week after arriving home, I had completed both and awaited results. I had already asked for the CT scan to include the pelvic/hip region and just a few days before I was due to be admitted to Christie's I was told that the scan showed metastatic spread to the head of the femur requiring urgent surgery. I was advised to avoid any weight-bearing use of the left leg and referred back to the QEH.

We were devastated. The tsunami of fear and distress was not unlike that which we had experienced at the time of the original cancer diagnosis more than two years earlier. Not only had our hopes for a cure evaporated but I was faced with the prospect of major surgery and uncertainty as to what else might be happening given that I had been off 'chemo' drugs for 8/9 weeks. And as a constant reminder of my plight, I now go nowhere without a stick (a few feet), elbow crutches (a few metres) or wheelchair (for any greater distance).

Friends and family have been generous and supportive but being so disabled is difficult to accept.

A week later, I had a meeting with my QEH consultant oncologist who managed to establish that the referral he had made to the Royal Orthopaedic Hospital had resulted in an appointment for the following Tuesday. Yesterday, I visited the ROH for x-rays and today, I wait for Tuesday's appointment.

I feel a little better than I did but the waves still threaten.

So, I am trying, as my brother John advises, to 'stay in the moment' by which he means, 'don't think too far ahead, take things one day at a time and try to be positive.' It helps, up to a point but with both the cancer and surgery-clock ticking, it is both difficult to weight and wait-bear.

Indiana Ling?

For those of you who have asked the question 'How do you adjust to/cope with/come to terms with the knowledge that you have a terminal illness?', I think the considered answer must be, 'by degrees'. You may think, more than two years on since I was first given the news, that I'd be reconciled to the idea by now - but I am still insulated from reality.

So there are times, such as now, today, when I simply can't take in what is happening to me, when a sense of sheer incredulity takes over.

I 'know' that my life must be under threat because I hear people, skilled, well-paid, difficult-to-reach people, tell me so in a matter-of-fact way. It is implicit, rather than explicit, deduced by reference to the dwindling list of treatment options, the reported growth in nodules, the limited time-efficacy of drugs.

I know too, because I write a blog that people read, (or at the very least, visit) and then there are the concerned enquiries from friends and relatives - and so, my difficult-to-extinguish hope that this is all a mistake, or a dream, is unsustainable, in error.

The most recent reminder of my plight arrived yesterday.- but first, I need to take you back to my previous blog.

If you recall (I know there are other issues in your life, so forgive the reprise) my last CT scan revealed growth in the nodules/lymph node/tumour - these terms appear interchangeable at times - and as a result my oncologist recommended a shift from one to another, equally unpronounceable, drug. I was due to sign the consents the following week and we duly returned fully expecting to do so.

However, Diana raised at this follow-on appointment, the question of a different treatment for kidney cancer,  one pioneered by the Christie Hospital in Manchester; immunotherapy. She had first mentioned this approach two years ago but our consultant had deftly dismissed it in favour of oral drug therapy.

Two years later, he responded differently, saying that should we wish him to make a referral he would be happy to email the consultant in Manchester. We asked for a few hours to research and discuss before getting back to him later the same day.

To agree to a referral seemed a 'no-brainer' - there was nothing to be lost from gaining further information and a second opinion. So, the referral was requested by us and following a few days in Norfolk with the family, we returned to find an appointment had been made.

The date was yesterday's.

In the early morning, we joined the other teeming 'car-cells' and moved up the M6 hoping to avoid a haematoma in this artery well-known for its sclerotic condition. We reached the hospital in good time, thanks to the navigational skills of GPS, and after giving bloods and having my first-ever ECG, we met the consultant.

I won't bore you with the details but the upshot was that 'the Prof' as he is soubriqueted, considered that I was in the category most likely to gain from the treatment programme. The tantalising, if statistically remote, prospect of a 'cure' - never on offer with targeted drug therapy - was held aloft and eagerly examined but for such a glittering prize there is of course a high price to be paid.

Like Indiana Jones, in the Temple of Doom, I have to dodge the many potential and strikingly unpleasant side effects. The therapy works through the repeated intravenous infusion of a natural protein that supplements the body's own immune system, stimulating it to make killer T-cells that attack the tumour.

Patients are hospitalised for five days in two phases separated by two weeks recovery followed by eight weeks recovery. A CT scan follows before the next full cycle. If a patient is benefitting from the programme, there may be as many as four full cycles, spanning  something like a year in duration.

So, there's a decision to be made - and speedily. I have already been off all cancer medication for six weeks. I know what those close to me are thinking but they all say that ultimately, the choice is mine. You are probably thinking along similar lines.

Meanwhile, I have been shocked to discover - or is that rediscover? - that I have a life-threatening condition.

Writing to you helps me to process the fact. Thank you.

The Streets of London

A couple of blogs ago, Judith left a comment in which she encouraged me to 'keep sharing' - so, after a lengthy break - I'm back.

A lot has happened in the mind-numbing narrative of my condition and then there have been travels and trips of a modest mileage and other events.......but......

I guess, if you can face it, I should start by updating you all on the results of the MRI scan (21/05/2013). It confirmed serious 'wear and tear' but, more importantly, failed to show any 'hot spots' in the spinal column - the disease had not metastasised. Ipso facto, the back pain of which I had complained around Easter time was not the result of any spread of cancer.

So, this was good news and on the back of these results the oncology registrar had no objections to my request for a further reduction in the chemo dosage. I would be on just half of that on which I had begun the regimen nearly two years earlier.

Even better, with the help of a re-referral to Mark, 'my physiotherapist' at QEH, I began to develop an understanding of what had happened to me at the time of the acute back pain. I came to realise that the episode of over-exercising on the bike coincided with my self-initiated, weeks-earlier efforts to reduce the dosage of my other, neuropathic, medication. The exercising had triggered muscular inflammation or some such and I no longer had the levels of drugs in my body to control the neurological trauma. Result; excruciating, scary, crippling, prolonged pain. QED.

However, with the neuropathic drug dosage now restored to the original levels, I was able, tentatively, to return via 'Pilates-lite' to cardio-vascular working-out. I even got back on our abandoned exercise bike.

That's the good news.

.... but, about two weeks ago I had another CT scan - 'to set a baseline', as the oncologist said, for the newly-reduced chemo. Yesterday, I had the follow-up appointment and the result is - 'all-change'.

The scan revealed regrowth of the lymph nodes in my chest and modest growth of one of the nodes in my lungs. We are still talking 'small increases' but sufficient for him to conclude that the drug I am on may be losing its efficacy (but not as a result of the reduced dosage). The average length of patient-time on this drug is eleven months, I had been on it for nearly two years - my time was up.

Consequently, he was recommending a different drug, 'son of Sunitinib - Axitinib.' I know they sound like Sumerian or Persian princes but they are part of this new generation of oral chemotherapy and this new drug had only emerged from clinical trials and been passed by NICE in the early part of this year. He assured me that the trials demonstrated that the side effects were less severe than Sunitinib but the Googling I have undertaken today, reveals a very long list of 'probables', 'possibles' and 'unlikelys'.

I told him that we would 'go' with his recommendation - that 'I was in his hands'. He, a modest man, said that he was uncomfortable with taking that responsibility. The fact is; the responsibility is mine (I sign the consents next week), even if I have need to defer to his expertise.

This consultation was quickly followed by an invitation to join a pharmacology department pre-research discussion on the third floor of the Cancer Centre. Of course, we had already agreed to take part. We spent more than an hour in a small group of patients, partners and pharmacists in an exchange led by a university lecturer. The research focus, to be honest, appeared to be too narrow and perhaps, looking in the wrong place.

They wanted to learn what we, the patients and partners, wished to know that would help with the self-administration of our medication. There was one man present who was taking more than a dozen different drugs. He had gone home, after his first visit to the hospital pharmacy, with a carrier bag full of pills and potions. Living alone, he had developed his own spreadsheet to help make sense of it all. He struggled to contain his emotions as he spoke of the way some drugs had triggered deep depression.

For Diana and myself however, the question of what we wanted to know went wider than any narrow focus on drugs. What we wanted to know about appeared to be outside the knowledge boundaries of many of the specialists we have met; information about holistic approaches, alternative therapies that can help hand back a sense of control to the patient and family. We don't expect a beleaguered NHS to offer this as part of the 'normal service' - only that they keep an open mind and provide signposts (no doubt with the obligatory disclaimers).

The other thing with which they might assist, is bringing together people who are going through  related experiences. I learned so much from listening to other patients, not least a sense of 'if you think you have a raw deal, think again'.

I guess this is the same kind of message Ralph McTell has been singing about for more than forty years.

My great climacteric

Tomorrow, 22nd May 2013,is a significant day for me; it is the occasion on which I enter my great climacteric. A climacteric is defined as 'a period in which some great change is due to take place in the constitution', though whether this be for good or ill is unclear. These periods are said to occur when we reach an age that is a multiple of seven and an odd number; 7x1, 7x3, 7x5, 7x7, 7x9 and some say, in these days of longevity, 7x11 and 7x13. The great climacteric however, is 7x9 = 63

I'm not sure how many further 'great changes' my body can take.

Mid-May also marks the second anniversary of my cancer diagnosis. I was told by the surgeon that the mean survival time for those in my position, with renal cell carcinoma that has metastasised to the lungs, was just in excess of two years.

Now, were I to conform to the mean - that would result in a significant change in my constitution.

However, I do know that the medics and the NHS haven't yet, given up on me.

The MRI scan and the cystoscopy (11/5/2013) have come - but not exactly, gone. The MRI turned out to be a doddle. Concerned as I was by the prospect of being 'entombed' in the tunnel, I took what precautions I could. I discovered that there are two scanners in the QEH Imaging department and one is more spacious than the other. I opted for the former and then requested backup sedation from my G.P. After a telephone consultation in which I asked for advice on the maximum, sub-lethal dosage, she prescribed diazepam. I duly took my tablet at the recommended time and - experienced no change.

For extra insurance, I opted to take my sister into the scanner room. She was to be directed to stand at the head of the scanner and repeatedly assure me of the proximity of my head to life-sustaining, open space.

Ok, so I took some trouble over this.................... but when I was admitted to the scanner room, my concerns evaporated. This bright, spherical , techno-miracle was so different to the elongated toilet roll of earlier experience. It still made a racket when in operation but at least I was unable to hear most of it - I fell asleep.

Now, I await the results as to the origins of my acute back pain. Though fine today, having just returned from a walk through a seasonal, shallow blue ocean in Austey woods near Wootton Wawen with Mary, Pete and Keith, I have been immobilised and bed-ridden on other days.

I see the physiotherapist on Friday and the oncologist, Thursday week. I'm hoping that between them and the radiologist's report, they can come up with a narrative to account for what exactly is going on with my spine - and better still, some advice on how to improve it.

As for the cystoscopy, the 'preamble' went well but the insertion of the 'box brownie' scope came to an abrupt halt when the doctors advised me that they could not continue. I had just settled back, both hands behind my head, in order to watch all the action on the overhead monitor, when they quickly decided they would have to terminate the procedure.


Apparently, I have a stricture, a narrowing, of the urethra and this would mean arranging a further appointment and another procedure. My urethra would be dilated in order to progress and examine the bladder. This will be carried out under general anaesthetic.

To be honest, I wasn't too upset to be told I was coming back for a G.A. (as we say in the business) - but you had probably already guessed as much. Please, don't be misled, I'm actually pretty tough. I once had a rose thorn removed from my finger without any pain relief, save that from my mother 'kissing it better'.

This was quickly ruled out as an option by the medical team last week.

Green and pleasant land, dark satanic mills

Where to start?

To answer my own question, perhaps with 'the now'.

I am sitting at my desk, early on a bright, but chilly, Saturday morning. I am worried. Within a couple of minutes of emerging, larva-like, from my bed, I could feel the return of acute pain deep in my left buttock at the base of my spine. It had started again yesterday, just before my re-referral appointment to the QEH physiotherapy department was due.

I won't bore you with the details but this pain first occurred after a lengthy workout on an upright bike at Moseley School's Health and Fitness Centre. For a while, until the paracetamol kicked in, the pain was excruciating and I could only move if bent double with my head down to the floor. I was relieved when after a few days on painkillers, I was able to walk as before; not exactly a model of agility and grace but no worse than I had been for what feels like half-a-lifetime ago, when all this began.

The physio was good. He explained that this new, acute pain was probably different to the chronic, neurological pain in my back and leg. The new pain he said was the result of trauma  (exercise) and was probably referred to the base of the spine from higher up in the lumbar region. All will hopefully become clearer after I have another full spinal MRI, scheduled for a few days hence.

After previous, claustrophobic, experiences, I am not looking forward to that. It has been ordered by the oncologist after hearing about the acute episode; I think he wants to check for further spinal metastases. For good measure, at the same consultation he ordered another cystoscopy.

'It was only a light pink', I whined after hearing his response to my telling him of a few occasions of blood in my urine (aka haematuria - it sounds more principled in the Graeco-Latin). 'It doesn't matter to him', I mused uncharitably. 'He just clicks a button'.

'And it only happened twice!'

'Three times', Diana added, treacherously.

So, I emerged with a double whammy - and now, this damn acute pain has returned to add another woe....

Enough. Time to change the record/cd/iPod playlist................

I was right about Geoff's funeral (21/4/13). It was emotional and it was special - attended by a sea of mourners. We said 'goodbye' at the crematorium and celebrated  his life at an amazing wake in the church hall on Billesley Lane. It was the kind of event with much music, food and drink, that Geoff would have organised - which, in a way, he had.

It has taken, it is taking, a long time to process the events and emotions of that day. Even now, I can feel my mood changing as I type - so I'm not sure that I can write about some of the darker 'stuff' that hung over me like a dense cloud last weekend. We were on Tees-side, a trip planned well before Geoff's death. It is an area of which I had no knowledge beyond the descriptions of an emigre, now honorary Brummie, Neil. He recommended RSPB Saltholme in the Tees estuary and a visit to the famous transporter bridge as well as hinting at other more pre-industrial delights.

We booked two nights in the Premier Inn on the Tees barrage and promised ourselves further nights at more picturesque accommodation as we wended our way home through North Yorkshire.

In one of Saltholme's bird hides, a knowledgeable and friendly RSPB volunteer explained that the original inter-tidal, estuarine, mudflats originally covered more than 14 square miles - but that was in pre-industrial times. Following extensive land reclamation, this very special habitat was now reduced to a few hundred acres.

Saltholme's scrapes and pools are not tidal but combined they elbow their way into a space between the industrial skyline of Middlesborough and the truly impressive chemical works to the south of Hartlepool. The backdrop for the many visitors to the reserve is a filigree pattern of poles, pylons and tall sky-piercing chimneys linked by horizontal pipes; the superstructure of the chemical works. It may sound strange, sacrilegious - even pretentious - but the vista brought to mind the ornate decoration of high-Gothic, rood screens in a mediaeval cathedral.

After the avian delights of Saltholme we moved a short distance up the road to the gleaming, muddy delights of Seal Sands and the Tees National Nature Reserve, remnants of that vast inter-tidal zone mentioned above. Thence to Hartlepool's historic highlights before the frustrating search for something to eat.

Meanwhile a dam of emotion threatened to burst at the most inappropriate moment; at breakfast the following day. I wanted to explain to Diana that I felt myself to be a fraud. There and then, I had to put the stopper back in the bottle; this was neither the time nor the place. Back in the hotel bedroom, I uncorked. Someone had recently said that I was 'inspirational' and others too, reading this blog, have used similar words. They - you - do not know the truth. I am at times a complete mess, hiding behind this jaunty veneer of amusing anecdotes. There is nothing admirable about my fears now made more real by Geoff's death.

But despite Diana's ministrations, I cannot escape the paradox - even this blogged confession has elements of the artful..................

We abandoned the ideas about North Yorkshire and drove home via Redcar, o'erlooked by the Tata steelworks, the Victorian resort of Saltburn and the beautiful Cleveland hills.