Blue is the colour.

It has been a long time since I picked up (pressed down on?) a keyboard. In fact, nearly six weeks have passed since my full-hip (ball and socket) operation at Birmingham's Royal Orthopaedic Hospital (ROH) on the last day of September. The failure to blog since has arisen from a combination of the experience of physical discomfort and a dearth of energy and optimism.

So, firstly, by way of explanation, the seat at my desk is a little low for me to follow the first of the three golden rules of hip-replacement therapy - at all times keep your knee below the hip - otherwise you experience stiffness and pain in your new joint which may, as with transgression of rules 2 and 3, result in dislocation.

Now, I already knew something about the discrimination visited on 'high-seatist people' because of my earlier experience with sciatica/spinal/neurological problems - but I now know a great deal more. The simplest, shortest, excursion can be a nightmare if I need to sit down. There is evidently a 'low-seatist' conspiracy designed to force 'high-seatists' like myself, either to gather on uncomfortable bar stools in dimly lit and badly-serviced nightclub ghettos - or to emigrate to Kenya in the hope they will be accepted into the high-furniture homes of Masai tribesmen and their families. Don't believe me? Just have a look at how many low seats put your knees above your hips! Once you see it, you can't stop.

Whoops, I digress; a hobbyhorse of mine.

Rule 2, by the way, is 'Never cross your legs' and rule 3; 'Never twist your trunk to reach for something behind you'. Fortunately a lot of work must have been done in recent years on these issues and discrimination, though by no means extinguished, has been effectively addressed.

You may have lost the thread by now but the second reason for my failure to blog has resulted from the struggle, over the course of the last few weeks, with a sense that things were not good; improvements in mobility were painfully slow, various ailments took on sinister proportions - and there hasn't been much to watch on the TV.

However, as this blog bears witness, in  the last couple of days I have detected some progress. The TV is still awful but the ailments have quietened and mobility has discernibly improved.

So, yesterday we went to the theatre - a place 'normal' people inhabit. This was our first trip out involving  a drive of some distance (Stratford) with myself hauled onto the back seat (knee level with, but not above, hip) and the first outing for my new and highly-coveted, blue badge.

I, or rather Di, submitted a lengthy medical treatise to the blue badge agency but I was, nevertheless, called for an assessment. Richard drove us to Harborne; he has an SUV-type vehicle which seemed to offer a solution to the transport problem but even that proved uncomfortable. After extracting me from the car, I was seen by an occupational therapist who put me through my mini-paces.Though impressed by my 'crutch control', in an upstairs office she confided that, within moments of seeing me, there was never any likelihood of my being refused.

Some weeks later, the blue badge was desperate to show what it could do. So, after a hassle-free drive down the M40 we began to cruise the streets close to the Royal Shakespeare Theatre (RST). Within a short period of time we chanced upon a nearly-empty, on-street, disabled parking bay just yards from the theatre.

Minutes later, people parting like the waters of the Red Sea, I made my way propelled in an SUV-modified wheelchair (lots of cushions) and was soon safely installed in a bay reserved for me in the auditorium. The people immediately behind me had to stand throughout the play (Richard II) but that was a minor hiccup, given the knee-hip calculus.

We enjoyed the play, we enjoyed the drive, we enjoyed being in the world without pain (though, in truth, I was 'dosed up to the nostrils').

Today, I had my second hydrotherapy session at the ROH. My first had been something of a disappointment because the promised ambulance had failed to arrive. Before anyone begins to mutter, I want to point out that the ROH insisted on providing transport and at this time we had yet to try any alternative. In any case, once sampled, it is impossible to decline the experience. I have never felt so safe, so cared-for as I did on those three journeys between home and hospital. If I was picky, the only thing missing was the police motorcycle escort - that would have been a thoughtful addition.

Today's full hydrotherapy session helped to sustain and reinvigorate the sense of progress with my mobility.

So, now I can blog again - you have been warned.

P.S. thanks for the cards, best wishes, emails, visits, help, love, offers of help, apples, flowers, loan of dvds, books...............

Update on Rod

Just a quick blog to let you know that Rod had his operation during late afternoon on Monday. He was transferred to the high dependency unit as a precaution and, given that everything was progressing as expected, he was returned to the ward yesterday. The operation went smoothly and his recovery was progressing well until he found himself experiencing increasing levels of pain and discomfort during yesterday afternoon and overnight. It seems that the epidural was anaesthetising his mattress rather than him (there was a leak) and once this was discovered he was put on another pain control regime which is now working, although leaving him feeling very tired.

The physios attempted to get him walking this morning but Rod's blood pressure was low causing him to feel  faint and, fearful that he was going to pass out on them (they must have had a scary vision of being crushed under his 6'2" frame), they wisely decided to wait and try again tomorrow.

Rod is very grateful for all the love and best wishes that have been coming his way (and mine) so thank you for that and I hope to be letting you know, over the next few days, about his discharge date.

Diana

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.