3 Months on

Firstly, an apology: I have been neglecting the blog. Probably because nothing much has happened and I am sure that you don't want me to prattle on about irrelevant stuff...............mind you, not many people have been looking at it recently, so perhaps I am just talking to myself (no change there then!).

3 months have now passed since I finished being zapped. Did it work? Am I free of the cancer? The short answer is that I have absolutely no idea! 6 weeks ago, blood was taken to establish whether my PSA level had gone down. 4 weeks after the blood test I received a letter from the consultant saying that the level had not gone down. Ho hum. He did, however, enclose another form for a blood test with the suggestion that I have another go in January.

I would imagine that for most people this might come as a bit of a disappointment, but I have to say that I am not at all surprised. As usual, I had done some research before seeing the consultant and discovered that PSA levels do not usually go down for several months after radiotherapy and may even go up in the short term. The result therefore came as absolutely no surprise. Indeed, it made me think that the NHS was wasting time (theirs and mine) again.

By now, you are probably used to me griping about the inefficiency of the British National Religion that is the NHS, so I will pass no further comment other than that  it might reduce the number of useless appointments if they pointed people to internet references.

Not a lot more to say really. Still a bit tired every now and again, which I take to be a side effect, but otherwise nothing much seems to have changed (thank goodness!).

In the almost complete absence of any feedback and the falling "hits" I am not sure whether it is worth continuing with this blog. If anyone shows interest I am happy to continue, but otherwise I will probably only update it a few times more and then let it slide gracefully into internet oblivion......... if you have strong views either way, please do leave a comment or get in touch.

Today's song is not a song, it is an entire album! It is the first album I ever bought (so you can guess my age pretty easily from this one) and I was reminded of it the other day. Like the other links, best listened to through headphones to catch the effect. Have fun with it!

Electric Warrior

Waiting again

Before I start, a big welcome and thank you to whoever is reading this in Russia. I am constantly amazed at the range of countries that people reading this blog, whether just a mistaken page search or a more in-depth following. At the risk of boring everyone, the countries so far (in order of number of "hits") are:

UK
USA
France
Australia
Russia
Ireland
Turkey
Switzerland
Ukraine
Germany

I have a good idea who the Australians and people from Turkey are, but everyone else is a mystery........and you all seem to be so shy! I have only had a couple of comments and an email since I started over a year ago. Go on, take the plunge and risk getting in touch. I can guarantee that I will not bite.

If you read the last post, you might recall that the vampire service at Medway Hospital relieved me of another few millilitres of blood to find out how my PSA level was getting on. Still no result back, or at least no result that anyone has bothered to tell me about. Even when I do find out thee result, I do not expect it to be a dramatic change as it can take 5 months or so post treatment to find out whether it was successful through the relatively crude method of PSA level. Unfortunately, it can also be 5 or 6 months before any lasting side effects come to the fore.........

So here I am, 2 months after the radiotherapy course finished, still not knowing whether I am "cured" or whether I will have any lifelong effects. This will sound a bit strange, but I am still not sure whether that is stressful or not. I can hear you asking yourself how can someone not know whether they are stressed by the waiting and not knowing? the answer is not quite as simple as it sounds since it relies on what I might call a compartmentalised mind. 

One part of my mind is very focussed on the next challenge; this has effectively come to an end, so no stress there.

The other part would worry about the future if I let it...............stress

Answer? I keep one of the parts in front and concentrate what is left on the "real world". A fun balancing act, but it seems to work.

On a really positive note, I found a pen that I lost ages ago. It sounds like a trivial thing, but it is a fantastic pen and was given to me years ago by a team of people I worked with; it means a lot to me and I was very upset when I lost it

I will be back as soon as I hear anything from the hospital. In the meantime, a couple of songs, one of which is quintessentially English and brought a new word to the language (check out "Jobsworth" in wikipedia). When you listen to the second song, it will not surprise you to hear that he was thrown out of South Africa in the 1960s.............

Jobsworth

Republic Day

6 weeks on: back to Medway :(

I have been trying to think of an appropriate analogy for changing the venue for NHS treatment from KOC to Medway Maritime Hospital. Imagine, if you will, getting used to driving a Bristol Blenheim 3 (Never more than 3 per week) and then being told that you had to swap it for a Ford Focus. Have a good picture in your mind? Good, now forget it.

Imagine instead starting with a second hand Ford Focus which has a few bits missing and then having to swap it for a Trabant (WTF is a Trabant?). Much better! This afternoon I went back to the Oncologist's clinic held at Medway Hospital. To be fair, the cancer unit is much better than the rest of the hospital, but, as you will read if you can bear sticking with this drivel, I also had to visit part of the main hospital.

I had purposely not looked in the internet to see how long it takes to divine whether radiotherapy has worked until last night, but had a good idea that it was not yet from the fact that I had not been invited for any further tests etc. Attendance was therefore from a mixture of curiosity and to have the opportunity to ask about when I might be told how effective the treatment had been.

Arrived a bit early and sat in the waiting area which has sprouted a new electronic screen to tell you how late each clinic is running. Mine was the best performer with only a 15 minute wait posted; by NHS standards a minor miracle. The waiting room was otherwise exactly as it had been last time I visited (brightly coloured vinyl  "comfy" chairs, staff milling about on very important missions etc) except the artwork that had formerly adorned one wall had been removed. Why comment on this? Because in its place was a typically Kent (and Medway) notice which read "Working Progress". I can picture the scene: junior manager says to someone that they need a notice telling people that work is in progress and it gets translated into the local dialect................

The screen did not tell the truth! 2 minutes after the appointed time, up pops the friendly oncologist who summons me to his office.

The usual questions: how are you? any effects from the treatment? etc etc. Gave the usual response: none, except fatigue. As you might have gathered from previous posts, it is a common side effect, no-one is really sure why it happens and there is nothing the NHS can do about it (run this clip on to 16:08: Doc Morrissey). The only options seem to be a) ignore it, or b) break the law and obtain some "speed"...................

The crucial question: when will I find out whether the treatment has been successful?. A truly Dephic response to this one. The only gauge of success is another PSA (blood) test which, by his own admission, is a slightly crude measure. It might go down to normal in a few months, or 5-6 months; it would seem that the only way of judging success, or at least ruling out lack of success, is regular measurement of PSA levels. We agreed that I had might as well have a test now and he would write to me to let me know the result. Presumably I will then be invited to have PSA tests at regular intervals from then on until it looks like something has happened, or not.

Off to the blood letting department. For those unfamiliar with Medway Hospital (and I hope for you sake that most of you are!), this entails walking across the site which brings a whole load of risks in itself. The health paranoics will probably be horrified by the clouds of cigarette smoke which wreathe the site (The NHS is only non smoking up to a point; who would challenge a stressed out Medway resident with a cigarette in his/her mouth?). My fear is the footpaths that just end, thus forcing you to cross the roadway that runs through the hospital several times.

The blood letting department is truly the Trabant of the NHS: Undecorated for decades, scuffed vinyl flooring, old chairs etc etc etc. Only 3 people in front of me and, by the sound of it, a blood letting room full of phlebotomists; one's obvious thought is that this is going to be quick, bearing in mind that it probably takes less than 2 minutes to extract a phial of blood. Wrong! I had to wait 15 minutes; no idea why, perhaps that is just the standard time that one has to wait......

As tradition demands, a song. I think that I have probably posted something by this band before, but this seems (sort of) appropriate. The clip does not really do them justice from my recollections of their gigs in the '70s, but it gives you a flavour. Glasgow's finest!
The Faith Healer  If you enjoy it, I would recommend letting Youtube do its thing and watching a few more of their live performances

Until next time................

Four weeks on

It is now just over 4 weeks since the radiotherapy finished and I was liberated from the daily trek to KOC. I have no idea whether the treatment has been effective and will not until I have seen the consultant again at the beginning of next month; between now and then is a sort of limbo period on the cancer front. Even then, no-one has given me a timescale as to when the next blood test is due to take place so I have no idea whether the consultant appointment will mark an end of the journey. No point in dwelling on that one, there are things to do and life to be lived.

Writing that last phrase reminded me of an entertaining news story that has been unfolding in the UK over the last few days, so please excuse me while I digress for a bit.............

The UK parliament is set to debate a bill on assisted dying in the near future which has provoked two responses of note: one from a group of religious leaders, the other from the hospice movement. They are remarkable for different reasons, but both worthy of a mention.

The Religious, predictably, came out against the whole idea of assisted death with a well rehearsed argument about people potentially being coerced into suicide, and most emphatically did not approve of the idea of professionals helping those who were no longer capable of killing themselves. I realise that this was well meant and comes from a philosophical view about the sanctity of life, but they really had not thought this one through. Their attempt to ensure that life is prolonged for as along as possible (the "only God may decide" argument) may, paradoxically, lead to shortening of the lives of people who are diagnosed with a terminal illness. My simple argument runs as follows:

• Being diagnosed with a potentially terminal illness is a pretty serious turning point in anyone's life which forces them to consider what they might wish for in the worst case.
• People's responses to this will differ. For some, length of life will be pre-eminent in their considerations; for others, quality of life will be the prime determinant.
• For the latter group, many will ensure that they have the means to choose the timing and nature of their demise.
• If assistance is illegal, people will have no choice but to end their own life whilst they are still physically able i.e. their lives will be shorter than they could have been.

The temptation is to conclude that the people who signed the open letter are uncaring and unfeeling *******s, but I suspect that they just have not thought it through properly.

The second response was, frankly, hilarious. The hospice movement (if they don't have on in your country, I would recommend Wikipedia), came out as being against assisted dying because it would harm their business!!!! If anyone ever needed evidence that good intentions can turn into self preserving institutions which have completely lost touch, this is it.

Enough of that, back to the blog proper.

Life here is returning to normal following the 7 week interruption and I am getting back into the "swing" of things. My energy levels are still not what they were, but at least I can stay awake long enough to get back to working. I am extremely fortunate to be working with people who are both colleagues and friends and have been incredibly supportive; I am painfully aware that they have had to work harder whilst I was effectively out of circulation.

With luck, the fatigue will continue to reduce (note to grammar pedants: is this a double negative?), as will the physical effects. If anyone reading this is facing similar treatment and is curious about the latter, please feel free to contact me by email etc. I promise you that it is nothing scary, but it did not seem appropriate to share here.

Will update randomly, but next definite "scheduled" post will be after seeing the consultant at the beginning of next month.

A bit stuck for a song this evening, so falling back on a tried and trusted favourite band.......

Country boy

Made it!

I am pleased to announce to anyone who cares to read this that my daily visits to the KOC radiotherapy department are now over. Only one word for it:

Yippee!!!!

In the true spirit of the NHS there was, of course, a "spoiler" in the form of a short leaflet explaining that the side effects would last for another few weeks. In an effort to reassure those who find this deeply worrying, it gave telephone numbers that I could call if I was worried about anything to do with the treatment, side effects etc. Guess who would be at the other end? You got it: a "Macmillan Radiographer"................fat lot of use that would be. As I think I might have said before, I prefer that people labelled as "expert" know more than me about their subject, or are at least helpful in some way; unfortunately both WMS and G showed themselves to be sadly lacking. I will grant, however, that WMS obviously has some skill as a technician.

By contrast, the last set of radiographers that I saw were excellent. I had met all of them before at various times and they expressed what seemed like genuine pleasure that today was my last session. It could be that they had found me so odious that it was a relief, but if that was the case they hid it well. When I said that I would now get another tattoo to celebrate, they wanted an explanation of the first one and seemed interested in what the next would be. Full marks to them.

I to did pause with the wonderful receptionist to thank her for brightening the mornings. I also enquired about the identity of the manager; I will write to her expressing (some) of my thoughts on the service at KOC.

Before I bid the subject of KOC farewell, an observation on something that people are very quick to complain about, but never seem to notice otherwise. Every morning, the same man was assiduously cleaning the reception area, corridors etc. I expect that he does much more than that, but 08:30 is obviously floor cleaning time. The place was spotless! I have never seen a floor that clean; it puts my kitchen to shame. After 7 weeks of padding back and forth in the same hospital non-slip socks (worn over my own in case you are thinking that they must be a bit rank by now!), there is barely a mark on them. Needless to say, this will be included in the feedback to the service manager.

The very observant of you might have noticed that I am writing this in the morning at a time when I am usually semi-conscious or comatose. I can only ascribe this to adrenalin resulting from the thrill of being free of the place. If only the NHS had done the right thing and prescribed some amphetamines, I could have been feeling like this every morning........a lesson to learn there chaps? (and chapesses of course).

I expect that those of you have been dutifully digesting this blog day after day are feeling relieved that I will now go away and you can break the habit? Sorry to disappoint, there will be more to come. The joy of side effects tailing off (I hope), then the suspense as to whether the last 7 weeks have been effective in getting rid of the cancer. Interestingly, no-one has mentioned timescales although I am, aware that the diagnostic competence for prostate cancer is so poor that the outcome is based on whether my PSA level has gone down at some point, undefined, in the future. Whatever the outcome from that, whenever it may be known, it is certainly the end of treatment from my point of view; nature can take its course from now on, whether for good or ill.

Before I sign off and allow myself to rest, a plea that I have made a few times before. I will give this its own blog post later, but I would be fascinated to get some feedback. Did you arrive here by accident, or on purpose? Are you a survivor? Are you newly diagnosed? Are you just following this because of the evident quality of the writing and modesty of the author? Have you enjoyed it? Most importantly, has it been useful?

I think that there is the facility on this blog to send comments without them being published, so if you are worried about everyone seeing your answer I can guarantee that I will not let it be published if you ask me not to. If you are still worried about being "seen" in public, please feel free to drop me an email at woods.phil0@gmail.com  I promise not to share anything with anyone else if you do not want me to. 

Enough, time for today's song. I have been saving this one from day one and it is by one of my favourite bands. Unfortunately, like most of the music I have shared with you over the months, most of the band are no longer with us. Must be something to do with my age..................

As usual, headphones on, volume up and enjoy!

You must have guessed what this one would be!!!!

Very nearly there

Within touching distance of the end of radiotherapy and thought that I would structure today's entry slightly differently. The first evidence of this is the musical links will appear at what seem suitable junctures.

The first are a pair of links whose publication dates seem upside down to me, but then if you have listened to some of the other tracks I have pointed you towards you are probably aware that my musical taste and knowledge are slightly dubious.

The earlier song: One more time.......

The later song: One more shot

One of those might put you in the mood to read on, but I very much doubt that both will!

I have now travelled some 900 miles back and forth to KOC and been zapped by intensive x-ray beams 36 times. For the first time, I stopped at the display cabinet in the corner of the waiting room which displays selected anatomical specimens from a deceased radiotherapy machine (you wondered where that was going didn't you?). Absolutely fascinating, but it basically demonstrated that the machines are no more than lumps of glass and metal, albeit put together in new and more interesting ways than one might expect. There is a term for this, which was coined by a close friend and colleague: "Morecambisation" (for an explanation, here is a link: Grieg Piano concerto )

As the treatment has progressed over the weeks, the side effect that has had the biggest effect has been fatigue. In the first few weeks, this was just a slight decrease in energy. It progressed to being unable to concentrate for very long without my mind going into a slight "freewheel", which effectively stopped me working. Its ultimate incarnation has been to deliver and insatiable desire to sleep

As if this was not enough, I am also supposed to steer clear of caffeine and strong alcoholic drinks. Those who know me will realise that this is the equivalent of telling a fish to steer clear of water. Needless to say, I took this as "advice" rather than an imperative and moderated input rather than ceased.

You might expect that, feeling tired and desirous of sleep, falling into the arms of Morpheus would not be much of a problem. Indeed, it wasn't until very recently. To explain this, I will have to bore you with a short history lesson.

Some 8 or 9 years ago, I moved from London to the delights of the Kent countryside. London can best be characterised as 24 hours of noise, light, movement and entertainment. For a long time, the last quality outweighed the first 3, but there came a time when the downsides overtook the upsides. Critically, it is impossible to live in London and own a dog if you have any love for the species. It is also a bit of a challenge to own a horse. So , despite Dr Johnson (if you don't know the quote, here is a link: Samuel Johnson ), off to Kent.............

The house is entirely unremarkable, but where it sits is the important bit. No human neighbours!!!! It is at the bottom of a nature reserve which is also a "Site of Special Scientific Interest" in an area which is a designated "Area of Outstanding Natural Beauty". I might take slight issue with the last one, but that is what the Government calls it so you probably get the idea. We do have noisy neighbours though: foxes, badgers, owls and the like. Believe it or not, in the absence of other sounds, owls can seem quite loud!

Either side of the house is an empty plot of land. One is owned by a true Romany gypsy and his family who use it to store things and I will often refer to as the best neighbours I have ever had. 

The other is owned by a woman who lives about 20 miles away; she refers to it as her little bit of unspoilt Kent. At least, it was until recently............ On the land is a small wooden building which is a cross between a summerhouse and a shed. It is evidently pretty old and had fallen into disrepair. The owner recently seems to have employed a couple to renovate it and bring it back up to a usable state. All well and good until recently; no problem putting up with some honest hammering and sawing noises, even if it does seem to be taking longer to renovate than it would take most people to build from scratch. Then the children arrived!

Warm days and hot nights; the sort of weather than demands the opening of windows and invites falling asleep sitting in the garden during the day to work off radiotherapy fatigue. Not with what sounds like 20 small children running up and down screaming their heads off (it is probably only about 5, but you get the idea!). Worse still, they are staying in a tent and do not seem to sleep. Guess who else cannot sleep as a result? It is a strange feeling to be so tired as to not function, but unable to sleep due to one of the very sounds I moved to the country to escape. I am not a fan of other people's children at the best of times................

I now understand why the British army used sleep deprivation as one of their torture techniques in Northern Ireland in the 1970s. It is very effective at taking people to the edge. 

Sorry, a whole load of self-indulgent twaddle today. Just to round it off, a couple of songs which sum up the feeling of sleep deprivation. Or (never start a sentence with a conjunction!) maybe just the result of too many drugs.............either way, both are best listened to through headphones with the volume turned up:

It begins with a blessing

Song from the bottom of a well

A quick postscript: such is the fatigue, it has taken me all day to write this. Sorry if the joins show...............

Only a few more to go

I should really have written this yesterday, but I fell asleep....................

After 33 sessions of radiotherapy, I now only have 4 to go! It actually feels a bit strange that the end is in sight as I have now become used to the daily routine of attending KOC (Kent Oncology Centre, please keep up!), being briefly irradiated and returning home to walk the dogs before the inevitable fatigue cuts in. Unfortunately for them, both their walks and their owner's temper have become progressively shorter as the weeks have passed. I ascribe both of these to the progressive fatigue effect.

What will I miss when it comes to an and next Wednesday?

Fighting my way through the rush hour traffic, dodging the particularly bonkers drivers as best I can? Nope

Sitting in the car park at the hospital when I arrive too early (which is almost every day as I have to allow up to an hour to travel 12 miles)? Nope

The cheery smile and greeting of the receptionist at KOC? Yes

The amazingly fetching hospital pyjama bottoms, sometimes complete with permanent stains and always much, much to large? Nope

The radiographers who ensure that I am in the right place in the machine and irradiate me every morning? Yes. I rarely see the same ones two days in a row, but all have been pleasant and a few have been genuinely good fun to talk to. I will probably eulogise about the top two or three on the blog when all this is over.

The "Macmillan" radiographers? Definitely not!!!

The side effects? Definitely not!! I just hope that they do not last too long after all this finishes.

As you might have gathered, on balance(!) I will be glad when all this has finished. I am trying hard not to count down, but today's song will probably betray me..........

I will post an entry next Wednesday when I am free of KOC. I already have the song for that one lined up................. Then we enter the "has it worked or not ?" phase, so you might not be free of me just yet.

The song. It is a slightly awkward "cut", but I chose this version as it blends the version used for a popular tv programme (if you remember it, you are giving your age away; if you do not, a quick google search will tell you all you need to know!) with a live performance. As the "yoof" say: enjoy......

Uh huh, it was the.....

25 down

I did promise that I would try not to post too much during the boring phase of trundling up and down to KOC (strictly speaking it is down and up, but I shall not let topography get in the way!). I will confess that nothing earth shattering has happened since my last post, but I am afraid that I was starting to miss writing the blog. Sorry. This will be a short one though. 

It is now 5 weeks since I started the daily commute to KOC. To mark this, the schedule entry for tomorrow includes another "review" with a Macmillan radiographer. Before I comment on that, I think that there are a couple of groups of people who deserve a mention..........

The Radiographers
The people actually lining me up on the table and zapping the offending part have been universally pleasant. They are an interesting bunch and I rarely, if ever, see the same people from one day to the next; so far I must have seen the majority of the 40 or so in the extended team at least once. Just make life more interesting, they occasionally include students. 

Some are crisp and business-like, others manage to retain a professional air, but are willing to engage in a little light-hearted conversation. There is even the occasional moment of laughter in these exchanges. In my opinion, the ability to laugh with people should be an essential quality in all clinical and front of house staff; a bit of humour can transform the atmosphere.

Fellow "victims"
An interesting a very varied bunch, some engage in conversation, others affect a "thousand yard stare". A good cross section of the great British public, with one puzzling exception. I know that Maidstone and its environs are not known for their diversity, but KOC covers a lager area which takes in the Medway towns, and yet I have not seen anyone having their prostate zapped who is not white. This strikes me as extremely odd; what on earth is going on? Are people not accessing services? If I was running one of the local Clinical Commissioning Groups, I think that I would be asking questions.

-----------------------

Back to the impending "review"..........

So far I have experienced two reviews and learned that: a) they will not have a clue as to how effective the treatment is / has been until after it has finished and b) it seems to be beyond their abilities to provide any help at all for side effects. Neither session has added anything to my knowledge, so I am at a loss as to the purpose of the things. 

Are they meant to make me feel reassured? They don't

Do they have any effect on my treatment? No

As far as I can make out, the purpose of a "review" is solely to justify part of the work of a more highly paid radiographer than those actually administering the treatment. In short, they are a complete waste of my time; I will not be attending the appointment tomorrow.

Fortunately for you, one of the effects of the fatigue is that I cannot sit up for hours writing a blog............time for a tune. A woman with one of the most amazing voices I have ever heard, but you have probably never heard of her. Turn up the volume and enjoy!

Millie J

NHS fails again

Warning

This one is a bit more angry than usual, You might want to skip it and go to something a bit safer...............

Before the "meat" of this post, the good news: I have now passed the halfway mark; the end of my daily trips to KOC is now in sight...........just. 

Passing this milestone would be enough to brighten my mood if it were not for the fatigue which is starting to reach seriously limiting proportions. I am now reduced to a window of being ok for a couple of hours in the mornings, having to snooze my way through early afternoon, then finding that any serious activity results in the evenings being wiped out. The rational side of me says that this is probably a price worth paying for getting rid of the cancer; the emotional side is furious that my body is letting me down. Even worse, I am now having to let friends and colleagues down.

You might recall that I asked at my "review" for some drugs that would help me overcome the fatigue and that this was far outside their experience. No luck there.

My next step was to try my GP..........nice bloke, very friendly, but as it turn out completely useless. " I can prescribe vitamins or steroids, but amphetamines or similar are not in my power to prescribe; these can only be prescribed by a specialist". 

Conclusion: the NHS is useless at treating the whole person and is quite happy to ignore subjective experience in favour of its own protocols and procedures. The system seems to be geared to an attitude which could be characterised as follows:

• You insisted, so we performed a screening test
• We might have missed our deadlines, but we offered you treatment
• Every time you question what we do, you are marked down as cynical and difficult
• We offered you 19th or 20th century treatment because that is easy; if you want anything more modern, you have fight for it
• Now we are treating you, you should be grateful that we will fix the original problem (we hope)
• Your quality of life or ability to function / work is not the province of the NHS while we treat you.

In short, I should be grateful for a second class service. To think, people fight to keep this moribund organisation! Worse still, they resist any kind of reform. Even worse, the majority of people in this country seem not only to accept this, but to treat it as a form of religion. 

Meanwhile, out in the real world, consultants are busy telling us why they could not possibly work at weekends unless we pay them a fortune to do it in their spare time at agency rates and we have a new report on cancer services. Apparently the key message is that diagnostics should be speeded up..............for a "snappy summary, click this link:

Cancer report

The press headlines seem to have missed the second point: an 80% increase in screening. It will be interesting to see whether they finally come down on what I think is the correct side of the PSA screening debate. 11,000 men still die from prostate cancer each year in the UK; surely the introduction of regular testing for men over 50 would reduce this? No-one seems to be bothered.

An interesting aside is that the chair of the "Task Force" (sounds very like something the British would send into the middle east) is Harpal Kumar, who just happens to be the chief executive of Cancer Research UK. No vested interests there then?

It might surprise you to know that, once upon a time, I was a wholehearted supporter of the NHS. I worked in it, saw some of its flaws and naively thought that being on the inside might be a way of improving it. Older and wiser, I am now convinced that the only way to change public services is to mobilise people and communities. Like most young people of my generation, I started as a revolutionary, then calmed down and accepted the way things are. It is only in the last 10 years that I have rediscovered my revolutionary roots; acceptance of the established way of doing things is not a morally acceptable way of living.

Enough ranting, it is late and my window of wakefulness is coming to an end............and you will have had enough by now. Time for a tune. Tonight, something from way back featuring one of the most talented musicians ever to come out of Birmingham (Kitts Green):

Brontosaurus

I will be back with something a bit more thoughtful and upbeat in a few days................

16 down, 21 to go

I know that I picked up on this the last time I wrote, but something seems to have had a huge effect on the number of page views this blog is attracting. I was marvelling at a paltry 49 the other day; yesterday it reached 69 and, as I write, today's page views stand at 18 and rising....... My curiosity is more than piqued!



At this point I was tempted to put a song link in again, then thought better of it in case you, dear reader, perceive it as pressure. Having debated the pros and cons with myself for a whole 30 seconds, I realised that if you have ever read any of the other posts you are unlikely to be offended or take things the wrong way, so here it is:

Who are you?

I am no great fan of the band, but this one is worth a look if only for Keith Moon's facial expressions!

Anyway, back to the saga..............

Back to KOC for the daily light cooking with ionising radiation and the "Macmillan Radiographer Review". This is an appalling piece of NHS failure in clarity of expression as it implies someone will be reviewing a Macmillan Radiographer. What they actually mean is that it is a chance for me to meet with someone with whom I can share concerns and reflect on my treatment, in a safe and non-judgemental environment. OK, I made the last bit up, but it sounds like the sort of thing that they might say if pushed.

As with the first review, I was a little concerned that they might throw WMS at me (if you don't get that, you have some catching up to do!). Would I be conciliatory? arrogant? challenging? entirely neutral? By the time I was called I still had not made up my mind.

I was collected by J, one of the few radiographers administering my treatment that I have seen more than twice. He strikes me as a thoroughly decent young man and is always very pleasant. We have even got to the stage of limited small talk as I am loaded onto the machines. On the way through the labyrinth he asked whether I would mind if he attended my review as an observer. Before assenting, I said it depended on who was doing the review...........it turned out that it would be WMS's sidekick G who seems pretty harmless on his own, even if he does seem totally puzzled by someone who questions what is being done to him. J duly joined us and took up a position leaning against a windowsill.

As is usual with NHS staff, G had a computer screen open in front of him which I assume contained my details. No offer was made to share this with me and I did not think to ask to look at it.................I will remember next time. I explained that something was making me extremely tired in the middle of the day and, since the radiotherapy was the only substantial change in my routine, assumed that was the cause particularly given that fatigue is a common side effect of radiotherapy. I followed this with a request that he get someone to prescribe me something to overcome this as it was very disruptive to my work.

"Unusual" was his response.

Although the subjective effect is obvious to me, and all the literature on radiotherapy lists tiredness as a side effect, it is clearly something new to the people at KOC.

"I have never heard of anyone being prescribed anything to overcome fatigue" was the follow-up. He did assure me that he would have a chat with the oncologist and see what he could do, so there is still a tiny bit of hope I suppose.

I gave up, bid him a polite farewell and exited stage left, fortunately not pursued by a bear (time to brush up on your Shakespeare!).

Oh well, so much for the experts. I will see what the generic GP can do when I see him on Friday. 

That's enough self indulgent twaddle for the evening. A bit stuck for a relevant song today, so a bit of a tenuous connection with this one. If the NHS fails to come up with suitable drugs, this may be me in Maidstone town centre on Saturday night...................

Waiting for the man

Risk

Before I write anything else, I am going to start with a song:

What happened?

I have never heard of "Sublime" or the song before, but had to find something that had that title. As it happens, it is so quirky that I am glad I found it. Why "what happened"? I hear you say.

(sorry, this could become a whole post of asides. I do realise that I cannot hear you, any more than television presenters will see you later, but I hope you will indulge me in the occasional slip into idiom).

This blog usually jogs along at a rate of about 5 page views a day. That does not sound much, but believe it or not the total page views since I started are now nudging the 2000 mark. Yesterday, only one person took a look at one of the pages. Today, so far, there have been 43 page views! Not only that, but nearly all are from the UK and it has been a really pleasant sunny day outside; surely reading this is not better than enjoying the sunshine?

Sorry, that sounded a bit ungrateful. Please don't get me wrong, I am very grateful that you take the time to read my scribblings and offer my heartfelt thanks for your sacrifice, but today???????

Anyway, that is not why I am writing this evening................... as I recall, I promised to write something about risk.

The subject of risk is one that I could bore on for hours. Its relationship with choice, expectation, the press and public spending is something that I am a passionate about, but to expand fully would probably take a small book. To save your sanity, here are some abbreviated thoughts that might strike a chord with you. Before you go any further, I should warn you that this is not as light hearted as usual so you might want to skip this post.

If you are still reading, it is at your own risk............................

You might have noticed that in the last year (it is a year, almost to the day, since this odyssey started) risk has raised its head every now and then. Every time I have tried to take a calculated risk with which I was comfortable, some apparently well meaning professional has tried to explain why I cannot take it. Mostly I have managed to prevail, but not every time.

This experience is not unique to me. The other day, my father tried to buy some over the counter medication for himself and my mother. He asked for two packets of a well known painkiller only to be told that he could only have one. I have met the same problem when buying something as simple as aspirin at a supermarket. Why on earth would this happen?

The really simple answer is that if you take industrial quantities of over the counter medications you might do yourself some harm. Seriously, there is a view that if people can only buy one of something at a time they are less likely to kill themselves through taking it. No matter that you could walk around the corner to another pharmacy to buy some more, then on to another...................... The result is that both my parents and I make sure that we keep a plentiful supply by overstocking (one at a time of course!).

In the incredible (look up the definition!) world of NHS Hospitals, I have variously been told that I cannot leave because it might be risky (twice), that I might be in pain if they do not sedate me into insensibility (twice, and both wrong!) and that I might suffer from an infection if I do not have a certain drug administered. Admittedly I was forced into the last one through a combination of threat to withdraw treatment and sheer bloody rudeness, but I got away with the others.............no thanks to the clinical staff.

To find an explanation for people constantly trying to take away any vestige of risk taking and choice, the anecdote  below might help.It is from a local authority rather than the NHS, but that does not really matter.

Many years ago I was part of a group looking at the "Corporate Risk Assessment"  for a local authority. I was a comparative minion at the time, standing in for my boss who was on holiday. Much discussion was had about what the biggest risk  the social services department faced and eventually the conversation settled on children's services. What follows will probably shock you if you have not worked in the UK public services; it will come as no surprise to anyone who has. It is a very condensed version of the reasoning that followed from someone suggesting that the death of a child was the biggest risk.

Death of a child?
Not the biggest risk; children die every day for a variety of reasons

Death of a child through abuse, neglect etc not known to us?
Terrible, but not the worst that could happen

Death of a child known to us because "we" failed to do something, or got something wrong?
Seriously bad, but not the top  of the list.

Unless you have scrolled down and read the next bit, I would imagine that you are wondering what on earth could be worse? At this point, let's play a little game.......take a minute and see if you can think what might be worse that a local authority failing in its duty to protect a vulnerable child? If you are up for it, I would be really interested to know what you are thinking at the moment; would you be prepared to hit the "comment" button and share it?

OK, the worst thing that could happen in a social services department according to a group of very senior people is............

The death of a child known to us because "we" failed to do something or got something wrong, and the press found out about it 

That conversation made such an impression on me that I can still remember it almost word for word all these years later. On the face of it, it is truly horrifying. It does, however, give some insight into why public services are so risk averse. They are terrified of the harm to their reputation if there might be any hint that they took risks that did not pay off. Not because of the life of the individual at the other end, but because of the harm to their reputation if the press can make that out they failed. It extends into the professions; in fact it is now all pervasive.

Now you know why my father could only buy one packet of pills and why WMS was so upset at me trying to take what she perceived as a risk that she was prepared to refuse to provide treatment. In the latter case, the short term risk of her being blamed for me getting and infection outweighed the long term risk of death from cancer; the chances are that she would not have been around by the time I died.

Not the usual upbeat ending I am afraid, but I hope you found it thought provoking.

As compensation for getting this far, here is the live version of a classic from one of the all time greats. Sorry the quality is a bit patchy, but it is a BBC recording...............

https://www.youtube.com/watch?v=iBqd-5W4taQ

Real side effect.........

Back again!

I really did not expect to be writing anything for a few days at the very least, but thought that this might be a useful bit of foreknowledge for anyone else who might be about to start radiotherapy.

You may recall that I referred to "nodding off" the other day? I was aware that tiredness is a reported side effect of radiotherapy, but like most things I have met so far on the quest, I sort of assumed that it was something I could overcome by force of mind / will. OK, I have done pretty well so far, but in this case.........

WRONG!!

 

Those who know me will appreciate that the "w" word is not a word I use often..........and especially not when referring to myself, but this time I have to admit to what a politician might refer to as a slight under-estimation of the reality of the situation. Messrs Tsipras and Miliband spring to mind.

 

Getting up in the morning is no problem at all, in fact I am getting up rather earlier than I was used to; driving to KOC for 08:30 easy (providing the traffic is behaving); walking to dogs when I return from the day's radiotherapy session, fun; functioning between the hours of 11:30 and 14:00.................not good at all. After 14:00, no problem again. This is the point at which treatment becomes a real problem as most of the daytime meetings I have to go to start between 11:00 and 14:00. In the words of the Bard, a f*****g nuisance.

 

I have now resolved that I will visit my GP asap to get something to help with this one, there are people that I just cannot let down. Let's hope that the risk averse culture we now live in allows him to prescribe a whole heap of amphetamines or whatever the modern equivalent is.

 

Our risk averse culture is something that I will devote a whole post to in the near future, particularly given the tale that a regular reader related to me today. Look out for that one, you might enjoy it!

 

You deserve something special in the way of music after that one, so a little ditty which fits with the theme of "risk". Hopefully it will make you smile : )

 

Ballbearing Blues

 

 

 



The Eight Five Effect

A title which either intrigued you or made you skip this one............. If the former, welcome; if the latter, you are probably doing something much more entertaining.

 I managed to get your attention, but I would imagine that you are now wondering what on earth I am on about? Bear with me and I will explain.

In the last 10 years or so, an Americanism (one amongst hundreds) has crept into the English language. It is now heard almost everywhere. Things that did not stop were once described as "continuous" or something similar, they are now most frequently described as being twenty four seven or, if you are of a seriously anti-literary bent, 24/7. Some parts of the NHS work all day every day.......but not all.

Today was the 10th treatment of my fun course of 37; for NHS outpatient treatment, this marks the end of 2 weeks as it tends only to work "8/5". Some departments might work up to "12/5", but the key number here is the "5". Please do not get me wrong, I am glad to get 2 days a week off the round trip to the Kent Oncology Centre (KOC) of 25 miles, not least because I can spend some quality time with my horse, but five day working can have some unintended consequences.

(as an aside, I will have travelled over 900 miles by the time I reach the end, or the equivalent of driving from London to Kaliningrad!)

Being a good "patient", I left plenty of time to allow for the traffic and arrived at the hospital about 25 minutes early. Time to listen the the radio and generally chill out before presenting myself to the unfailingly smiling receptionist. All went as usual and I took my place in "waiting area 4" to await my turn in "LA6". The NHS does love its numbers............

One of the screens designed to provide visual confirmation of the electronic voice's summons was not working, but apart from that nothing unusual until one of the radiographers (J) approached me. He apologised that they would be about 10 minutes late as they had suffered a power cut over the weekend. For whatever reason, this had clearly caused either their machine, or its supporting IT, to wobble. 8/5 now starts to become more significant..........there are clearly no hospital engineers at the weekend to check that the hospital's machinery has not been affected by a power cut. Goo job I was not in ITU!

A 10 minute delay is no great inconvenience and it passed quickly; I was duly summoned to change. I am not sure whether I mentioned this before, but the pyjama trousers supplied come in a variety of sizes all the way up to a sort of Macdonald Eater special. A critical part of the induction to radiotherapy is being taught to find a suitable size from the labelled heaps of hospital linen. The label on the shelf is of little moment; the critical indicator of size is the colour of the drawstring; in my case, this is white. 8/5 again...............there had evidently not been a laundry delivery that early on a Monday morning, so the only obvious trousers had red strings, which I think equates to Macdonald Eater.

All this sounds really trivial, but the power cut part does have a serious point. When I was loaded onto the machine I was attended by 3 staff who were running behind their schedule and were evidently a little stressed by it. Given that the delivery of the treatment relies on pinpoint accuracy in the alignment of me and the machine (we are talking about measurements to the millimetre here), the last thing that one wants is stressed staff lining everything up. I have faith that they got it right, but 8/5 working by the support departments was clearly not a help to them.

Enough for one evening or I might nod off over the machine. Nodding off is starting to become a feature of my days now.........an unfortunate side effect of radiotherapy.

I have no doubt that you have guessed tonight's tune already. If you haven't: shame on you!

https://www.youtube.com/watch?v=Ct949kIS-G0

Sorry it is not last year's Glastonbury performance, but the BBC has not put it in the public domain. Or any other domain come to think of it..................

First week done and a "Review"

It is now a week since the radiotherapy started, just completed session 6 so I am now 16.21621621621% cooked. So far, nearly all good to excellent although the KOC does occasionally remind me that it is part of the NHS through random changes of team / machine. The upside is that I am now getting to know most of the radiographers in that part of the building.

The Radiographers are uniformly polite, smiling and professional. The added bonus is that they seem to know what they are doing..............

Receptionists are great too. they have even persuaded the "Dalek" that summons people to their treatment to call me "Phil" instead of "Philip". The latter is only usually used in the real world by my mother to signify (mostly) minor disapproval; at all other times, people call me "Phil".

I have just re-read the post so far; now having doubts that they really are part of the NHS!

This morning was no different from the other 5, but contained an added bonus........a "Macmillan Radiographer Review". Having checked the mugshots at the entrance, the Macmillan Radiographers include the incredible (think about the definition of this one!) WMS, so my assumption was that this might not be the happiest of encounters for either of us. I had already picked out a suitable tune for this bit and, rather than leave it to the end as usual, it seems more sensible to insert it here.

https://www.youtube.com/watch?v=O8RhZDGLEXM

As it turned out, both WMS and her sidekick were inexplicably "not around" : ), so I was asked (note, "asked" rather than "directed") if I would mind hanging on to meet another Macmillan Radiographer.

A brief aside here. You, like me, might be a bit confused by the difference between a "Radiographer" and a "Macmillan Radiographer". I am still working this out, but it would appear that those funded by the eminent and hugely cash rich Macmillan organisation are distinguished by middle class accents and are perceived to be a bit higher in the technician "heap". My assumption is that they are somehow senior to the people who do the main work, but that might be just the way they see themselves.............. 

I saw nothing wrong with this so changed into my usual attire (I figured that pyjama trousers were probably not appropriate fo this encounter) and settled down to wait. A few minutes later, a woman with a wonderfully modulated middle class accent arrived, introduced herself as H and asked me to accompany her. It struck me that female "Macmillan Radiographers" might be appointed on the basis of their accent.............think Margo from The Good Life. 

(this will make no sense at all to people from outside the UK, so here's a clip to give you the idea: https://www.youtube.com/watch?v=GBogWsfAS50 )

On the way to her office (MRs must be of higher status, they have offices!), WMH apologised that neither WMS nor her sidekick was available. She was a little surprised when I said that was probably a good thing as the relationship between me and WMS had not got off to a good start.

I think that we were both puzzled by the purpose of the meeting: at only 16% (approximately) in to the treatment, it seemed a little early to be disucssing any side effects. She did, however, tell me that they have no clue as to whether the treatment has worked from the daily x-rays; this has to wait for a blood test at the other end of the treatment tunnel. I suppose it gave her 10 minutes out of a hectic schedule of shifting paper and was probably designed to reassure me that people with good accents are keeping an eye on what the workers are doing...........

Probably enough for one entry. With (or without for that matter) your permission, I shall reserve the right to publish random posts over the coming weeks, but will try to keep them as meaningful as possible.

.........and now for something completely different. This band featured at the Glastonbury Festival last weekend; after the boredom of Florence and the Machine, multiple dirges from earnest people with acoustic guitars etc, they were a breath of fresh air. If you like the clip, I would recommend listening to the full set on the BBC iPlayer................

Vintage Trouble

In the words of the younger folk: "way cool"

Treatment starts!

Before I start on the good news, a bit of a rant. People who have read this blog before should be used to my occasional rants and probably treat them with a mixture of interest, contempt or agreement. This one is slightly different in that it touches on national policy in the NHS.

If you are living in the UK, you may have heard in the news this morning that the "National Institute for Clinical and Health Excellence" (NICE) has recommended that more people should be tested for the early signs of cancer. Fantastic! I thought that this was great news................then I looked in detail at the guidance about prostate cancer. Here it is:

http://www.nice.org.uk/guidance/NG12/chapter/1-recommendations#/urological-cancers

This is no different from the previous advice. A PSA test is only to be offered to men who present to their GP with symptoms. This is where life gets a bit weird. Prostate cancer, of caught early enough, is eminently curable, but still killed 11,000 men in the UK in 2014. If you have the time, take a minute to imagine what 11,000 people would look like if they were all in one place; that is enough people to fill the Albert Hall twice over! Routine PSA tests would not save all of those people, but would probably reduce the numbers dramatically. A golden opportunity to do something about this needless loss of life passed up by the geniuses of the NHS.

In the words of a 21st century sage:


My plea to readers is to write to newspapers, lobby their MP, deluge the Department of Health with e-mails.............go to town on the b******s, the PSA test should be routinely offered to all men over 50.

Ok, rant over, back to the treatment bit.

Today was the first of 37 visits to the radiotherapy bit of the Kent Oncology Centre and I have to say that it was a good experience, if you can call being lightly grilled a good experience?

As I said, 37 in total, so only 36 to go. Fortunately, someone took notice when I asked that all appointments should be at the same time of day and, preferably, early morning; every single one is either at 08:30 or 08:45. This will take just over 7 weeks because the this bit of the NHS does not work at weekend................As an aside, I just noticed that the acronym for the Kent Oncology Centre is KOC..............

Arrived in good time and found that the most important member of staff was totally on the ball. Never undervalue receptionists: they are usually your first point of contact and can be hugely helpful. The receptionist this morning was completely tuned into my priorities. After checking that I was on her system, she immediately explained how to get a discounted car park ticket. This one lady immediately reduced my hospital bill from £10 per week minimum to £1.80! I was then sent around the corner to the appropriate waiting area.

Comfy seating, no annoying music and only about 10 other people there. Sat down and wondered what would happen next. Within 2 minutes, a young man called out my name and, following appropriate hand and voice signals, came to sit next to me. He checked who I was just in case I was an imposter, asked the usual "morning routine" type of questions, then invited me to sit tight and he would return when they were ready.

5 minutes before the appointed time, the young man re-appeared asked me to follow him and said he would explain the routine (in future I will not be collected, but will see my name come up on a screen in the waiting area along with an electronic voice summoning me). Routine dead simple: pick a pair of pyjama type trousers from the pile, get changed in changing room and then wait on a chair to be collected. I was also issued with a plastic bag  for my clothes and a pair of socks with grippy soles. Apparently these are a one-off issue, so I may be writing about their deterioration at a later date!

Bang on time, collected, led to the machine, measured, readjusted, lightly cooked. By 09:00 I was on my way out of the building....................... efficient, pleasant people and the bonus of good music to listen to whilst lying there. Today's tune is one of those that were playing; they have clearly chosen the mix to reflect the tastes of the generation they are treating! Just to prove the point, today's tune is on of those that were playing.

I will base future posts on things that are either really good, or really bad. I see no point in torturing you with the mindless tedium of 36 further accounts.....................

And now, today's tune. Happens to be by one of my favourite artistes of all time.

https://www.youtube.com/watch?v=juTeHsKPWhY

Medway Hospital again. Remember them?

Until yesterday, I thought that I had escaped the clutches of Medway Hospital. Then they came back to haunt me...............

In reading what comes next, please bear in mind that in the UK there is a statutory right to be given copies of your health records on demand, and that NHS bodies have the right to charge "up to and not exceeding £50". Just another NHS quirk; they do not seem to have got the hang of the fact that the records are yours................this is the compromise that did not upset doctors (in particular) too much and is deisgned to keep the workload of bureaucrats down whilst putting an additional bureacrative process in train.

You may recall that before Christmas I asked Medway Hospital to supply me with a copy of my medical records. I had been referred to UCH and had no faith that Medway would forward the scans etc so thought it safer to have something portable which did not rely on the NHS. (As it turned out, a wise move as they did not send anything, not even an electronic link, to UCH. They were not to know that the scans from Medway were far too primitive for a 21st century hospital to use, it was just the usual standard of "service").

The copies arrived promptly before Christmas. In January I reviewed the CD ROMS and spotted that something might be missing; a whole set of scans as it turned out. I naturally contacted Medway who were unaware that they had got it wrong. They sent the remaining part of my record.

So far, so Medway. I asked for something, they supplied part of it, I spotted their mistake and got them to correct it. This is about par for the course for this hospital!

When an invoice for the full £50 arrived in January, I assumed it was a mistake. They might have supplied the records, but not without me having to put some of the work in. I did what any right minded person would do and placed it in the tertiary filing system (the bin).

Lo and behold! Yesterday a copy invoice arrived with a threatening note demanding that I pay up or else...............

A short exchange with the finance clerk whose name appeared on the letter ("nothing I can do about it, you will have to talk to the secretary"), the secretary (you owe us the money because we gave you your records) led me to the Medway Hospital head of legal services......the ultimate bureaucrat in the department.

His contention can be simply summed up as: you ask us for something, we f**k it up, you spot our error, we rectify our error and charge you whilst claiming that we did our job.

It is no wonder that Medway Hospital is in "special measures" if this is their attitude. I wonder if it stretches to surgery........you can imagine the conversation:

"You took off the wrong leg"

     "Thank you for pointing that out; which leg was it exactly?"
     -
     -
     "We have now removed the other leg and have discharged our responsibility so please do not make any more fuss" 

"You have not done your job properly"

    "Oh yes we have, we took off the correct leg in the end"

I would not be at all surprised if a version of the above conversation took place on a virtually weekly basis in Medway Hospital!

I did offer to pay part of their invoice, but they are still insisting that they did their job well. This leaves me with a dilemma: do I waste time and effort making a point, or do I just pay up like a good little patient?

If you have any views, please feel free to send them; I have genuinely not made up my mind yet. Better still, if you are a lawyer, perhaps you would like to donate an opinion?

For any aspiring composers out there, perhaps you would like to make a few small alterations to this one in order to make it even more relevant to Medway Hospital................??

https://www.youtube.com/watch?v=pc0mxOXbWIU