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