Another day, another tattoo!

Having spent a whole 3 weeks away from the NHS, I was back there again on Tuesday. For once, it was quite fun and I even got three more tattoos for nothing! On (very quick) reflection, "nothing" is probably not the right word as, like all tax payers in the UK, I have already paid quite a lot, but we will let that pass for the minute.

 

I had been summoned for a "CT (planning) scan". Basically, this is scanning the three bits of gold they inserted a few weeks ago and performing what shooters might call "rangefinding". At home, I use bits of wood etc. to set the sights before potting vermin; the NHS use a slightly more expensive CT scanner before potting prostates. Same principle, just different kit and, hopefully, a less lethal ending!

 

The instructions were fairly simple: make sure you have drunk plenty of water before leaving home, arrive 45 minutes before allotted time and bring a 500ml bottle of water with you. Fortunately water is sold (!) in 500ml bottles so I was saved the trouble of converting millilitres into pints. Arrived as instructed, clutching my 500ml of bottled water and went to the reception desk. As it turned out, the first reception desk of 3!

 

Me: "Here for a CT scan"

Receptionist #1: "go down there, turn left, through the doors, second receptionist"

 

Walked down the corridor, turned left, went through the doors and queued for the second receptionist whose desk displayed a sign on which was written "CT scan". Only one person in front of me, so was seen quickly.

 

Me: "Here for a CT scan"

Receptionist #2: "Name?" told her my name

Receptionist: "hmmmm, date of birth?" told her my date of birth

"hmmmm, you are here for a CT scan?"

Me: "yes"

Much puzzled scanning of computer screen.......

Receptionist "Are you sure it is today?"

Me: "Yes"

More puzzled looks

Me "I was told to be here for a planning CT scan"

Receptionist: "Oh, you need radiotherapy reception" pointing to the woman sitting next to her

 

Fortunately Receptionist #3 had no queue and found my name instantly.....

"turn right down that corridor, through the doors and you will find a waiting area tucked away. They know you are here" Either the technology was better than I thought, or there was something slightly spooky about the last part of the that exchange.......

 

Found the tucked away waiting area and sat down. Not exactly packed; 2 couples who were fairly quickly led way. I was then joined by an elderly lady and her son. As she sat down, she looked at the wilting plant forlornly dangling its leaves over the side of a pot and observed "that plant is just like me, half dead". Who said that people cannot have humour in a cancer unit?

 

Waited......and waited......and waited. About half an hour later, a young woman arrived and invited me to follow her to the "quiet room". Apart from people in uniform walking around wishing each other good morning, the whole place seemed quiet enough, but off to the "quiet room" we went.

 

Pleasant young woman, but an almost complete waste of time. After checking I was not an imposter, she explained why I was there, what the side effects of radiotherapy might be and took my picture. Apparently they find having a picture reduces the chances of them treating the wrong person. We had a bit of a laugh when she told me that the radiotherapy might make me feel tired and I replied that if it did I would approach my GP for some amphetamines or, failing his co-operation, would head down to Maidstone town centre on a saturday evening and get some without the need for a prescription.

 

Sent back to the waiting area with the instruction to empty my bladder and then drink my precious 500ml of water.

 

Waited 45 minutes, then another young woman approached and said she would come back to collect me before rushing off (I think she was desperate...............). A minute or so later, yet another young woman approached and asked me to follow her into the CT room. We were soon joined by the other woman who clearly felt much relieved.

 

Usual explanations about machines etc and a few laughs, then loaded onto the machine. Ultrasound to check that my bladder had refilled sufficiently. Fail!

 

Sent back to the waiting area for another 15 minutes............

 

Back on the machine, ultrasound applied..........still not enough.......nearly enough......not enough......nearly enough......bingo! Not sure how all this worked, but it seems that the harder they push with the ultrasound probe, the more accurate the reading.

 

Lined up, lasers checked, a couple of minutes for the scan, then the tattoos. They obviously anticipate that people will find this traumatic, but I explained that I had had the real thing, so not bothered by a few spots. I am now the proud owner of three blue dots, one on each hip and one on my abdomen, which will enable them to align the radiotherapy machine in 4 weeks' time.

 

All in all, the usual long winded and bureaucratic NHS, but at least the people were very pleasant and we had a few laughs. It did strike me, however, that they were not exactly under pressure. I seemed to be the only person that the two technicians running the CT machine were due to see; no-one entered before me, and there was no-one waiting after me. One machine depreciating at a rate of knots, two skilled technicians, 50 square metres or so of expensive building and all this devoted to one person for about 2 hours that I was aware of. Great to have the personal service, but as an exercise in efficiency, this fell way short of the mark.

 

Next step is the treatment bit: 37 sessions over 7.5 weeks starting on 23rd June........I hope that the staff at the centre are feeling strong!

Back in about 4 weeks folks.
 

Now for a song. I have not written an entry since one of the greatest bluesmen of all time left us, so here is one of my favourite tunes of all time:

 

https://www.youtube.com/watch?v=HB1gePGUYRI

 

 

 

 

 

 

Oh dear, here we go again!!

The NHS has a real problem which I would imagine passes most people by........I will not explain that statement immediately, but let you read through and you can decide whether you agree with me.

As I write, I am chock full of antibiotics (more of that later), have acquired a scrap value as I now contain a tiny amount of gold (NB next generation, if the gold price is high at the time of my demise, make sure that you recover it), and eagerly looking forward to the outbreak of democracy in the months following the election.

You may recall that my relationship with the Mid Kent Oncology Unit, which is part of the Maidstone and Tunbridge Wells National Health Service Trust, did not get off to a good start when Well Modulated S**** (WMS) was a little economical with "la verite". I have now met WMS in person and it was not a pleasant experience for either of us.................

Just to continue the prologue a little longer, it is heartening to know that technicians like WMS carry out procedures which were previously the exclusive domain of the medical profession. It is less heartening to know that their training is evidently task focused and does not require any understanding of the theoretical basis for what they do, or the Mental Capacity Act (I will test you on that one later!).

Started as usual: I turned up on time and was told that they were running late. Great receptionist to offered to buy me a cup of coffee if they were less than 10 minutes behind. Her cash was safe, but only just. 10 minutes later than advertised, the junior radiographer I had seen last time appeared and summoned me to the basement. I was shown to an NHS standard room, invited to change into the obligatory hospital gown and asked whether I had brought the antibiotic suppository that had been issued by pharmacy last week. I had it with me, but it is an antibiotic to which I have a severe aversion so refused to hand it over until such time as I received reassurance that it would not be administered without my express permission which I would either give, or not, at the end of the procedure. This was a real problem for him.

Just a note about that particular antibiotic. It is called metronidazole and marketed as Flagyl. It has a serious side effect: it makes you feel sick. Worse, it is guaranteed to make you feel sick if you drink alcohol and the jury is out on the interaction between Flagyl, nicotine vaporizers (e-cigarettes) and one's liver. As a compulsive "vaper" and as someone who enjoys a drink, especially on election night, this was obviously a drug which I did not want to be in the same room as, let alone have it shoved up..........well, you get the idea.

I asked the radiographer what the basis for using this particular drug was and what the comparative outcomes were between single antibiotic use and the polypharmacy (more than one drug) approach they clearly favoured. Some of you may have watched W1A, in which case you will understand the next bit. He took on an expression often worn by the character called Will........ His answer could be summarised as "I have no idea, it is just what our protocol tells us to do". Oh dear.......

Things went a little downhill after that. He conferred with his colleague, WMS, and was sent back to tell me that this is what they do, but that she had summoned a doctor to talk to me. Nice young newly appointed consultant who told me that he had worked at the Marsden Hospital as a junior doctor until recently and they use the same drugs. He had little idea why or what the research was behind this.

I asked one of them (I forget which) why the procedure was carried out rectally instead of through the perineum which has a much lower chance of infection. "Because our protocol is that we would only do that under a general anaesthetic". They really should talk to a 21st century hospital like UCH...........clearly Maidstone is a little behind current practice.

Struck a deal with the doctor: I would decide after the procedure whether I would accept the Flagyl and, if I did not, I would sign a disclaimer. Job done? Not a chance.......

2 minutes later, the young doctor was back to tell me that the technicians refused to carry out the procedure unless I agreed to the Flagyl beforehand. I now had a choice: accept the drug or forego the chance to have radiotherapy and leave the cancer to its work I think this is called blackmail in the real world!

The message from the local NHS is: accept what we do and how we do it, or we will leave you to your fate.

Flagyl or years of suffering ahead............no choice, I accepted the concept of the drug, although not without making my displeasure known.

WMS is clearly not a person who feels that interpersonal skills are necessary, although she tried:
Her "We spoke over the phone"
Me: "I shall gloss over that since you told me that the drugs would be left at reception and they clearly were not"
Her "they were there"
No point in pursuing this one as she was clearly determined to remain in the hole that she had dug for herself.

WMS was competent with needles etc, as a good technician should be. She had clearly done it before, but not with anyone who questioned her.

Before insertion of the Flagyl, I reminded them that they should ask before administering a noxious substance (I had already agreed that I would say yes, but the point needed to me made). It was at this point that WMS  raised her voice. Best way to get things done in the NHS: shout at the patient...........................

I had no wish for further confrontation, so merely stated that she was administering a drug without obtaining the consent of the patient and gave in. This clearly went over her head.

Despite the leaflet from the hospital telling me that "....you will need to pass urine before you can leave the department" (a potential whole new argument about deprivation of liberty), the junior discharged his responsibility by advising me and I duly explained that I would not. I think he had had enough............

On reflection, I was probably a bit harsh on technical staff who just follow protocols and the argument should be with those in a position of responsibility, but hindsight is a great thing. The junior has just telephoned me to make sure I am ok and that I have understood my instructions for the next stage on the 26th. I apologised for picking a fight with the wrong people and acknowledged that they were just following orders......(I seem to have heard that phrase somewhere before in a very different context!)

Told a shortened version of the above to a friend when I got home who immediately asked whether it would have happened if I had been a private patient i.e. there was a direct customer / provider relationship. A rhetorical question, but one that others may wish to ponder. Does the NHS have the right to withdraw treatment if a patient makes a judgement with which their protocols do not agree? Should this be the case? Does the current culture of suing public bodies contribute to lack of choice?

We also came up with a new approach to the Flagyl / alcohol problem and a potential solution which I shall test this evening. Given that small amounts of alcohol cause nausea, perhaps this can be avoided by consuming sufficient alcohol to render the nausea insignificant? I will let you know whether it works.
Answers on a postcard please.................

Today's song has nothing to do with the blog post and certainly not WMS, but is here to celibrate the life of Errol Brown.

https://www.youtube.com/watch?v=JIN36NweL6I&list=RDJIN36NweL6I#t=3

All planned out

I know that I have been here before, but it looks as if treatment might finally be in sight. It might not be the treatment that I wanted, but it should buy me a few years, unless I am part of the unlucky 10% who suffer disabling side effects in which case.............we won't go there.

After a very poor start to the relationship with the Mid Kent Onclology Centre i.e. being told something which turned out to be far from true, things started moving properly yesterday.

The day started badly: went to collect the antibiotics in preparation for next week's implants and had to wait 45 minutes whilst a pharmacy department which seemed to be overrun with staff came up with a simple and, I suspect, common pack of drugs. Given that one gets 30 minutes free parking and that minute 31 on costs at least £2, I was beginning to suspect a subtle ruse designed to increase hospital income. Saved by a lovely receptionist who validated my parking ticket, so did not have to pay.

The post arrived at lunchtime as usual; contained within it was a letter from the MKOC which included a schedule of appointments. In abstract, seven and a half weeks of radiotherapy does not sound too bad, expecially if you say it quickly. When confronted with just over two pages of appointments, it starts to look pretty daunting! Radiotherapy proper will start on 23rd June and end on 12th August (that's 6/23 to 8/12 for my USA reader(s)).

The good bit is that someone listened. I had asked that the times were consistent i.e. the same time every day, so that I coud carry on with real life and, particularly, continue working . Every radiotherapy appointment is either at 08:30 or 08:45. Well done MKOC. There are a couple of "Macmillan Radiographer Review" entries (whatever they are!) which are at 09:15, but that should not be too much of a problem. I am guessing that these are short appointments to make the senor Radiographers feel better; happy to play that game as long as they fulfill their part of the contract.

All sounds good, possibily too good, but I shall suspend disbelief and return to my usual view that people do a good job to the best of their ability until proven otherwise. Providing everything else runs as planned and to time, I shall not make too much fuss over the initial untruth. A bit of a fuss, and perhaps a bit of humiliation for WMS (you should have read the last couple of posts!) as and when the opportunity arises.......................she needs to be told just in case she really does not understand what goes on in the department.

I was going to find a relevant upbeat song to end on, but the news that Ben E King died today sort of overtook that one. Here are a couple of his:

https://www.youtube.com/watch?v=i3HXy9mGPpI

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

You really could not make this up!

Fresh from watching politicians from the leading parties, and a couple of the fringe versions, debating about the NHS (Norman Lamb won hands down, Andy Burnham lost spectacularly), I could not resist providing a quick update on my trip to the Mid Kent Oncology Centre this morning.

I was assured by Well Modulated Sarah during our conversation yesterday that I could just pop into the reception area for radiology and collect the necessary antibiotics to take in advance of next Thursday's appointment. Either she had a bit of a brainstorm (the charitable interpretation) or she lied (the less charitable view). That is certainly not what happened.

What follows is a bit detailed because it is fresh in my mind; you might want to skip to the punchline a few paragraphs down.

Did some shopping and ended up a few miles from the MKOC, so thought I would "pop in" to pick up the pills. Found the place and, miraculously for the NHS, parking was free for half an hour. Nice modern building, but no wayfinding so asked my way to the radiology reception, So far, so good........

Found a receptionist, told her that WMS said she would leave some drugs for me and gave my name. "I will call her" was the response, "we are not allowed to keep any drugs at reception, please take a seat". I took a seat expecting WMS to come whiffling around the corner any minute.

15 minutes later, a man called my name, introduced himself (I forget his name) and invited me to accompany him. Apparently he did not have the drugs either.........

Like a good "patient", I followed and was invited to sit in a consulting room where I was told that he needed to take swabs in case I had MRSA. OK, fair enough.

I was then subjected to the usual NHS explanation which, thankfully, I managed to cut short as I had no need of further explanations and just needed the antibiotics plus the instruction leaflet. By now I should have expected what came next. He brandished another NHS form and told me that I had to have a blood test; this resulted in a fairly sharp exchange:

Me: "what for"

Him: " PSA level, we do not have anything recorded in your notes"

Me: "waste of time, I already know I have prostate cancer and thought that they did too given that all this was leading up to radiotherapy. The answer will be about 13.9. Do you not have access to the notes from Medway Hospital?"

Him: "          " mouth flapping in the breeze

Me: "just give me the antibiotics and leaflets and I will be on my way"

At this point he gave me two leaflets and a prescription with the instruction to take the prescription to the pharmacy to get the antibiotics. Now call me what you like, but "I will leave the tablets at reception" and what actually happened are a world apart. Someone was not telling the truth and I was pretty sure it was neither me nor the hapless chap sitting in front of me.

None of the above would really have merited a blog post, but what happened next just blew my mind...................

Less than 10 minutes to go before the free parking was due to run out, I arrived at the pharmacy, slapped the prescription on the counter and waited. "Sorry, we cannot dispense any drugs" was the instant response "our system is down".Without their computerised system, it would appear that no-one in the pharmacy department was able to take any drugs off the shelf and give them to the customers. Presumably pharmacists no longer have the use of either hands or brains.

Gave up.

I might have another go tomorrow, or might just forget the whole prophylactic antibiotic bit and take my chances next week. At least I made it back to the car with 3 minutes to spare!

For serious students of the absurd, here's a song:
https://www.youtube.com/watch?v=3aZ-Y5YvkxY

Welcome to the Kent Oncology Centre

If you read yesterday's post, you might be expecting to read my musings on what the last 9 months have cost. As ever in the weird world of the NHS, it delivered another surprise today which has taken over today's entry I am afraid.

Virtually as soon as I got home from a meeting this afternoon, the 'phone rang. This is not unusual during the day and is usually a business colleague, someone trying to sell something, the garage to advise that the car is ready..........I am sure that you know the sort of thing. Not today though. Today, it was a Radiographer from the Kent Oncology Centre.

Given the glacial pace that the NHS usually works at, it was something of a shock to hear the well modulated Queen's English of a British Standard Radiographer. If you have ever had dealings with Radiographers, you will probably also have noticed that most of them seem to be frightfully well spoken and female. Quite a few of them also seem to be married to or living with doctors. One of life's little mysteries.

There are three possibilities that spring to mind that might have resulted in a call the day after I had seen the consultant:

1. The Kent Oncology Centre is incredibly efficient
2. They are not very busy
3. The consultant told them about yesterday's consultation

Initially I had my money on 1 or 3, but as the conversation progressed 2 seemed a distinct possibility.

Well modulated Sarah (WMS) introduced herself as the radiographer who would be co-ordinating my radiotherapy and would be "with me all the way through it". A curious expression, but I suppose it is meant to seem reassuring.

She went on to outline the process from here on in: I would need to visit the Centre 3 times before the radiotherapy could start. The first was to pick up some antibiotics and talk with her face to face, the second to have 3 gold implants and the third to have (another) CT scan. At some point I would also be contacted by a "scheduler" who would arrange the actual radiotherapy times.

After a fairly short conversation, we managed to get 3 down to 2. I could see to real merit in an initial "chat", so asked her to leave the antibiotics at reception and I would collect them next time I go to buy some dog food (the country store is not far from Maidstone Hospital where the Centre is based). The discussion about the date for the implants was the bit that made me wonder about 2 being a real possibility; I was basically invited to nominate a date and time! Having consulted my diary, we settled on next Thursday. As for the CT scan, I will be sent an appointment which I can then re-negotiate if necessary.

WMS told me that the consultant had probably given me an armful of leaflets explaining what would be going on. I explained that I am not a leaflet sort of person and that I think he probably picked up on that in a consultation that even he admitted he would not forget. She was amused by that one and did venture that his referral to her had mentioned that the radiotherapy should take place at an agreed fixed time every day for the 7.5 weeks. Being assertive / difficult / bloody minded  can have its benefits..............

On the technical side, we did have a quick chat about the "blunt instrument" nature of NHS radiotherapy in which I expressed my usual incredulity that it is apparently impossible to focus a beam of x-rays (which is all it is) on anything less than a 4cm diameter. I got the usual NHS response which was, effectively, "that's just the way it is. If you think that I am being picky, take a small torch (flashlight for my USA reader(s)) and mark a 4cm line on a piece of paper. Now move the torch until the beam touches both ends of the mark. Seriously, is that the very best that NHS kit can do?

Watch this space to see how the Kent Oncology Centre compares with Medway Hospital and UCLH.

Tonight's song: I am afraid that this is another '70s throwback for no other reason than I enjoyed their gig in about '75

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

Decision made!

After 9 months, today was the day that I finally decided that the local service is probably the best of a bad lot (to non UK readers, sorry about the idiom). The 21st century option was ruled out by UCLH on clinical grounds, so I am back to the 20th century options which are the only alternative in the UK. I could have continued to explore options in Europe or further afield, but it is time to call a halt and just get on with it.......

You may recall that I was "summoned" at less than a working day's notice to the anticipated appointment with the Oncologist. This meant missing a very important meeting, but on balance it was (just) a sensible decision to accept the appointment. It was what I expected, but I don't think that the consultant will forget it in a hurry! 

Those who live in this country will be used to tales of hospitals full to the brim with people lying on trollies in corridors, stacked up in ambulances etc etc etc. You will also be used to politicians telling you that the NHS can be "fixed" by thowing money at it. The overcrowding may be true in some places, or some parts of hospitals, but the idea that you can solve anything by throwing money at it is b****cks. Why the rant? Read on.........

Appointment scheduled for 10:30 in the cancer day care unit at Medway Hospital. Signed in, only to discover that I was a "new patient" to reception; the cancer centre is not run by the same hospital group as Medway Hospital................ Lovely clean waiting area with curiously multi-coloured comfy chairs, little tables, a digital radio (tuned to radio 1?????), a volunteer offering tea and coffe (but not gin, I did ask), and virtually no patients. Indeed, the number of staff walking about being "busy" outnumbered us punters.

11:00 summoned by the consultant. A cheery, relatively young, chap with a good manner who actually comes out of his room to collect you. This is a complete contrast with the vast majority of the consultant body, but not unheard of. We had met before, but more as a courtesy to him for offering me an appointment just before I went on the UCLH odyssey.

An interesting 40 minutes or so ensued in which I asked as many questions as I felt I needed to. I won't bore you with the details, but it was both interesting, informative and, I think, pretty challenging for him; I was certainly not what he was used to! The upshot was that I am now signed up for a course of radiotherapy which will last 7.5 weeks. This is longer than the standard, but will lessen the risk of collateral damage which was, after all, the purpose of the quest. Thankfully, no parallel hormone therapy. Phew!

I am now to be contacted by a "scheduler" who will book me in for (another) CAT scan, the insertion of 3 gold implants (at least I will have some scrap value!) and the course of radiotherapy which will not start until June at my request. The radiotherapy will be daily, but only 5 days a week as we cannot expect the NHS to work at weekends. I have a feeling that getting a consistent time of day may be a bit of a problem, but I am fairly used to battles with the NHS, so do not anticipate too much of a problem......at least, not for me.

As I left the consulting room, on good terms I might add, I observed that he might need a stiff drink after that consultation. His response was amusing: " I think that you know the answer to that one". I hope that I did not spoil his day too much, but also hope that he might offer the information that I got out of him to future patients without prompting. I have a feeling that he will.

Getting late, so will stop writing now. Tomorrow I might add a post reflecting on NHS funding and its use of resources; if you are of the "all NHS problems can be solved by throwing money at it" mindset, you will probably want to give that one a miss. Unfortunately, you will be exactly the person who should be reading it......................

Your reward for getting this far: a song which sprang to mind over dinner this evening as being appropriate. Great pics with this one as well...

https://www.youtube.com/watch?v=heRyBhKi3kA

Here we go again.............

I thought that I might start by apologising for being back with more trivia to bore you, but then it struck me that you are here of your own free will, so if you read on, on your own head be it. Not sure whether the idiom will translate well for readers from Russia or the USA, but I am sure you will work it out.

If you have been following this so far, you may remember that sometime at the start of March UCLH decided that it would not be wise to treat me and referred me back to my local services. Regular readers will know that I am a good and compliant NHS patient, so I put my faith in the NHS ability to write and send letters. If you have read previous posts, you can probably guess what happened next..............

You guessed it: nothing!

After about three weeks, I emailed UCLH and asked for a copy of the letter that they had sent. No response, but curiously a copy arrived by first class post the next day. Even more curiously, I received a response to my email the day after that asking for my hospital number so that they could track the letter down. The phrase "the cheque is in the post" springs to mind.

Satisfied that the letter had been sent, I again played "good patient" and waited for a response from the local service. Three guesses...........

Nothing

On Monday this week I called the oncologist's secretary and asked whether they had received a letter from UCLH. Good job I had a copy; they had not received the letter. Scanned my copy and emailed it over to her.

This afternoon, by first class post, an appointment letter arrived. Over 6 weeks, and only that quick because I chased both ends; I hate to think what would happen to anyone who was not prepared to get stuck in and chase their own referrals.

Just to underline the NHS idea that we (the people who fund it) have nothing better to do, the appointment is for Monday. I have an important Board meeting on Monday, but have had to give apologies as even I cannot face the thought of yet more chasing to get another appointment.

Enough of me ranting about the shortcomings of the NHS. I should be grateful; after all, it is only 9 months since this journey started........you never know, I might actually get treated before we hit the 12 month mark.........or I might not.

For any reader who is from the UK and intending to vote in 2 weeks' time: if any of the candidates in your constituency says the NHS is wonderful, think very carefully before believing anything that they say.

.....and now a tune. Something which is both appropriate and highly inappropriate at the same time. Does not matter, it is a great song anyway......(that piqued your interest and will make you click on the link!)

https://www.youtube.com/watch?v=425GpjTSlS4