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