24 hours after seeing The Great Man. Regular readers may recall that he said he was referring me for a CT scan.................
Called the CT department: no referral on their system yet and they would then need a radiologist to "vet" it as and if it arrives. Presumably they do not trust the judgement of the consultants in their own hospital...........
Asked how long the wait would be and was told they try and fit cancer patients in quickly: one to two weeks! This might be Medway Maritime's idea of "quick"; no wonder they are in Special Measures. Needless to say, I have put a call in to the private hospital they recommended.
I was also told that he was referring me to the colo-rectal people for an endoscopy and potential biopsy/treatment. Tried to contact them: answerphone saying out of the office.
Bearing in mind that both of the above have to take place before I can even discuss the treatment for the primary problem, it does look like the hospital has a policy of either driving people to the local private hospitals or hoping that they will go away one way or another. Might explain the low life expectancy in Medway.
Will spend some time thinking about how to play this one. I dearly want to be able to say nice things about the hospital and do not want to play my "trump card" contact too soon. If he gets involved, my care will certainly come up to standard, but it is an irrevocable move once he knows what goes on (or does not) and the hospital might not recover.
Enough heavy stuff. Got 18 minutes to spare?
https://www.youtube.com/watch?annotation_id=annotation_100727&feature=iv&src_vid=JmyXTOHC3w8&v=W5_8U4j51lI
Tuesday 30 September 2014
Monday 29 September 2014
Pros, cons and dyscalculia
People of a certain age may remember a brain teaser that Primary School teachers loved to catch kids out with. It goes something like this:
A frog is at the bottom of a well which is 30ft deep and has slippery walls. Every time it jumps, it goes up 3ft and slides back 2ft. How many times does it have to jump to get out of the well? (The answer is at the bottom of the page for those who do not get it or think the answer is 30).
Welcome to a world where the frog starts half way up, then jumps up 3ft and slides back 4ft each time!
Before the meat of the post, a little more light relief...........
I am now getting used to the fact that, whenever I meet any health professional, they ask me what my date of birth is despite having it written in front of them. Often it is contained within a letter that I have handed to them. I offer two possible explanations for this:
http://www.amazon.co.uk/Calculator-credit-sized-Slimline-travel/dp/B002JUD3V2/ref=sr_1_2?s=officeproduct&ie=UTF8&qid=1412007301&sr=1-2
Now the "meat"...........
Finally met The Great Man. Will not go into the details of the meeting other than to say that he was a pleasant enough chap, although we did have a few points of friction which I think were really about who was in charge of the meeting (those who know me will understand that one!). The important bit is that he has an excellent reputation and runs one of only 5 specialist prostate cancer centres in the country. He is a pioneering surgeon and seems to be gathering a lot of "bright bunnies" around him.
If you have read this blog so far, you may recall that today was the day I hoped to be able to agree a treatment plan and start to take my life off "hold". No chance! Turns out there are a couple of worrying things that have shown up in the scans and The Great Man will not go any further until they have been checked out. Next steps are a CT scan to make sure that the blip on my pelvis really was the result of falling off a horse and (not so much fun) an endoscopy from what might be termed the "wrong end" of things. No treatment plan, or discussion about the options until:
Blood test (they will not do the CT scan without one)
CT scan
Referral to what the Americans call a Procologist
Endoscopy
?another biopsy
Report on the biopsy to the proctology people
Decision made by proctology on whether there is a problem and what to do if there is
Doubtless several clinical meetings and lots of scratching of heads
Report back to The Great Man
After all this, someone might be in a position to consult me about what could happen next. Based on the experience so far, this will probably be somewhere around Christmas by my reckoning
Bearing in mind that the National Standard is 2 months (62 days) between referral and commencement of treatment...................
The good bit is that they are being thorough. Full marks for that.
Had the blood test on the spot (well, a walk across to the Phlebotomy department and 40 minute wait), so no bar to CT scan being booked. Will contact them tomorrow afternoon if they have not been in touch.
As for the Proctologist, I have his name but will probably not pursue him until Wednesday.
This evening's song:
https://www.youtube.com/watch?v=q-fSZRYeBWk
The answer is 27. On the 27th jump, the frog is out of the well so cannot slide back down.
A frog is at the bottom of a well which is 30ft deep and has slippery walls. Every time it jumps, it goes up 3ft and slides back 2ft. How many times does it have to jump to get out of the well? (The answer is at the bottom of the page for those who do not get it or think the answer is 30).
Welcome to a world where the frog starts half way up, then jumps up 3ft and slides back 4ft each time!
Before the meat of the post, a little more light relief...........
I am now getting used to the fact that, whenever I meet any health professional, they ask me what my date of birth is despite having it written in front of them. Often it is contained within a letter that I have handed to them. I offer two possible explanations for this:
- That they suspect I may have stolen the letter and sneaked in off the street pretending to have cancer
- It is some form of subtle test to see whether I have dementia
http://www.amazon.co.uk/Calculator-credit-sized-Slimline-travel/dp/B002JUD3V2/ref=sr_1_2?s=officeproduct&ie=UTF8&qid=1412007301&sr=1-2
Now the "meat"...........
Finally met The Great Man. Will not go into the details of the meeting other than to say that he was a pleasant enough chap, although we did have a few points of friction which I think were really about who was in charge of the meeting (those who know me will understand that one!). The important bit is that he has an excellent reputation and runs one of only 5 specialist prostate cancer centres in the country. He is a pioneering surgeon and seems to be gathering a lot of "bright bunnies" around him.
If you have read this blog so far, you may recall that today was the day I hoped to be able to agree a treatment plan and start to take my life off "hold". No chance! Turns out there are a couple of worrying things that have shown up in the scans and The Great Man will not go any further until they have been checked out. Next steps are a CT scan to make sure that the blip on my pelvis really was the result of falling off a horse and (not so much fun) an endoscopy from what might be termed the "wrong end" of things. No treatment plan, or discussion about the options until:
Blood test (they will not do the CT scan without one)
CT scan
Referral to what the Americans call a Procologist
Endoscopy
?another biopsy
Report on the biopsy to the proctology people
Decision made by proctology on whether there is a problem and what to do if there is
Doubtless several clinical meetings and lots of scratching of heads
Report back to The Great Man
After all this, someone might be in a position to consult me about what could happen next. Based on the experience so far, this will probably be somewhere around Christmas by my reckoning
Bearing in mind that the National Standard is 2 months (62 days) between referral and commencement of treatment...................
The good bit is that they are being thorough. Full marks for that.
Had the blood test on the spot (well, a walk across to the Phlebotomy department and 40 minute wait), so no bar to CT scan being booked. Will contact them tomorrow afternoon if they have not been in touch.
As for the Proctologist, I have his name but will probably not pursue him until Wednesday.
This evening's song:
https://www.youtube.com/watch?v=q-fSZRYeBWk
The answer is 27. On the 27th jump, the frog is out of the well so cannot slide back down.
Today is the day!
Meeting with The Great Man later this morning to find out what the options are.......
After weeks of waiting, wondering, railing against the flawed bureaucracy of the NHS and generally not being very nice to be around, I will at least be able to start planning for whatever lies ahead. Having spent so long building up to today, written out the questions that I need answering and planned how I will play the meeting, I am curiously calm about it. Not sure what mental state I will be in later, but for some reason Friedrich Nietzsche springs to mind:
He who fights with monsters should look to it that he himself does not become a monster. And when you gaze long into an abyss the abyss also gazes into you.
Heavy stuff done, time for a song. Not sure why this one sprang to mind.........
https://www.youtube.com/watch?v=ghRk4BNHgJw
Catch up later............breakfast to be eaten, dog to be walked.........................
Well, that is that! More tests needed, but they were not pre-booked! Just when I thought that I might take a step forward, I go backwards again..........will add a new page once I have talked to my partner and got my head together.
After weeks of waiting, wondering, railing against the flawed bureaucracy of the NHS and generally not being very nice to be around, I will at least be able to start planning for whatever lies ahead. Having spent so long building up to today, written out the questions that I need answering and planned how I will play the meeting, I am curiously calm about it. Not sure what mental state I will be in later, but for some reason Friedrich Nietzsche springs to mind:
He who fights with monsters should look to it that he himself does not become a monster. And when you gaze long into an abyss the abyss also gazes into you.
Heavy stuff done, time for a song. Not sure why this one sprang to mind.........
https://www.youtube.com/watch?v=ghRk4BNHgJw
Catch up later............breakfast to be eaten, dog to be walked.........................
Well, that is that! More tests needed, but they were not pre-booked! Just when I thought that I might take a step forward, I go backwards again..........will add a new page once I have talked to my partner and got my head together.
Saturday 27 September 2014
Enter the Medway Clinical Commissioning Group
Letter confirming the hospital appointment with The Great Man arrived as promised. Stamp hand applied rather than envelope being put through the usual franking machine.
Hint to Hospitals: offering to send letters by email to those who use it daily might save a few pennies, 62 of them in this case, and reduce the handling costs.
Then a Very Interesting Thing happened..............I got a "Tweet". My first ever "Tweet", but it was the origin of the "Tweet" that was Very Interesting...............Medway CCG (Clinical Commissioning Group) no less!
I should warn you, dear reader, that you might wish to skip the purple bit below. Once upon a time, in a land far, far away called London, I was a commissioner of NHS services so I may drone on a bit.
For those not intimately acquainted with the arcane structure of the NHS, the CCG plays a pivotal role. Goes something like this.................
The above is a gross over-simplification, but trying to explain it all would take years.
Are you still with me?
Sure?
Ok, now for the fun bit............
Some years ago, there was much disquiet that the local commissioning of health services was run by faceless bureaucrats and lots of GPs said that they would be much better at it. GPs are important to the NHS, even if they are only contracted to it and not employed by it (they are actually small businesses, but that is for another day). The answer was to dismantle the PCTs (don't ask!) and create CCGs. In a Clinical Commissioning Group, local GPs are the key decision makers, albeit with a bunch of faceless bureaucrats working for them.
Safe to start reading again............
The CCG not only gives money to hospitals in return for services, it also had a critical role in monitoring the services that are given to us. They are the proxy for us, the people who use and pay for the NHS, so I was both surprised and delighted to receive a "Tweet" asking whether they could discuss my experiences with them. No brainer! Of course I will, but not just yet.
Call me either cautious, cynical, or optimistic, but I will wait until whatever treatment plan I agree to is well underway before I engage with the CCG fully. I earnestly hope that, apart from the odd glitch, I will be able to give them a really good account of the services I receive. Medway Maritime Hospital may be fairly small and in Special Measures, but it is my local hospital and I would dearly love to be able to play a part, however small, in rebuilding its reputation.
If you made it this far, a little light entertainment as a reward:
https://www.youtube.com/watch?v=v1dvAxA9ib0
Hint to Hospitals: offering to send letters by email to those who use it daily might save a few pennies, 62 of them in this case, and reduce the handling costs.
Then a Very Interesting Thing happened..............I got a "Tweet". My first ever "Tweet", but it was the origin of the "Tweet" that was Very Interesting...............Medway CCG (Clinical Commissioning Group) no less!
I should warn you, dear reader, that you might wish to skip the purple bit below. Once upon a time, in a land far, far away called London, I was a commissioner of NHS services so I may drone on a bit.
For those not intimately acquainted with the arcane structure of the NHS, the CCG plays a pivotal role. Goes something like this.................
- Government decides how much it will spend on the NHS
- Money is distributed by a bunch of civil servants to the bits that need it. One of these is local Clinical Commissioning Groups (CCGs)
- CCGs decide what services are needed in their area and commission them.
- Hospitals, other NHS services and "for profit" providers of healthcare are given the money
The above is a gross over-simplification, but trying to explain it all would take years.
Are you still with me?
Sure?
Ok, now for the fun bit............
Some years ago, there was much disquiet that the local commissioning of health services was run by faceless bureaucrats and lots of GPs said that they would be much better at it. GPs are important to the NHS, even if they are only contracted to it and not employed by it (they are actually small businesses, but that is for another day). The answer was to dismantle the PCTs (don't ask!) and create CCGs. In a Clinical Commissioning Group, local GPs are the key decision makers, albeit with a bunch of faceless bureaucrats working for them.
Safe to start reading again............
The CCG not only gives money to hospitals in return for services, it also had a critical role in monitoring the services that are given to us. They are the proxy for us, the people who use and pay for the NHS, so I was both surprised and delighted to receive a "Tweet" asking whether they could discuss my experiences with them. No brainer! Of course I will, but not just yet.
Call me either cautious, cynical, or optimistic, but I will wait until whatever treatment plan I agree to is well underway before I engage with the CCG fully. I earnestly hope that, apart from the odd glitch, I will be able to give them a really good account of the services I receive. Medway Maritime Hospital may be fairly small and in Special Measures, but it is my local hospital and I would dearly love to be able to play a part, however small, in rebuilding its reputation.
If you made it this far, a little light entertainment as a reward:
https://www.youtube.com/watch?v=v1dvAxA9ib0
Friday 26 September 2014
Being a member of the Awkward Squad can work!
Diagnosis made, scans done (apparently it is called "staging"), was waiting for an appointment to see The Great Man. If you have read this far, you may have noticed that I am probably not the easiest person to have as a client. Hate the word "patient": I am definitely not a patient person!!
Had set myself a deadline of 16:00 before starting to make the Hospital staff's lives difficult again. Actually sitting with fingers poised ready to call them when the phone rang. Polite young man who told me it was a "courtesy call" to let me know that I have been booked in to see The Great Man on Monday!
I have to wonder whether anyone less persistent would have managed to get an MRI and Bone scan, plus an appointment with The Great Man within 7 working days..............I hope that they would have, but somehow I doubt it.
Hint: do not be a passive recipient of services, take control and do not take "no" for an answer.
Had set myself a deadline of 16:00 before starting to make the Hospital staff's lives difficult again. Actually sitting with fingers poised ready to call them when the phone rang. Polite young man who told me it was a "courtesy call" to let me know that I have been booked in to see The Great Man on Monday!
I have to wonder whether anyone less persistent would have managed to get an MRI and Bone scan, plus an appointment with The Great Man within 7 working days..............I hope that they would have, but somehow I doubt it.
Hint: do not be a passive recipient of services, take control and do not take "no" for an answer.
Thursday 25 September 2014
Bone Scan and another State Secret
Time for the Bone Scan...........
https://www.youtube.com/watch?v=wPBbMbKSZrQ
Back to the hospital at lunchtime to be made radioactive prior to having the scan. 3 hours prior to be precise.
Negotiated the interesting wayfinding to a department tucked away in a corner with the grand title of "Nuclear Medicine". Greeted by smiling person in white overalls who registers my presence and asks me to sit in the waiting room.
Bang on time, summoned by a very cheery nurse (I think she was a nurse) who smiled, chatted and explained, as far as she could, what she was going to put into my vein: sterile water that has been passed over something radioactive. Full marks, she was excellent, even told me the short cut to get back to my car.
3 hours later, back to the hospital again. Made a big mistake by using one of the loos 2 floors below Nuclear Medicine..........wow!, so much for any form of infection control!!!
Greeted by the same nurse with another big smile. Warm, friendly, just what you need. 15 minutes later summoned by name by a woman in a white overall, told to go to the loo again (theirs was spotless!) and to sit on a green chair in a corridor. Invited into the scanning room by the woman in white who checked who I was again and failed to introduce either herself or the very young man standing with her. I asked. Was told their names and that the young chap was a student. Nothing personal, but I do not "do" students" so he was sent elsewhere.
Had to empty pockets and take belt off. Not sure whether that was because it might interfere with the machine or whether they thought I might try to hang myself with it!
Asked if I would be able to take a look at the pictures once the scan had been completed. Horror!! Only doctors are allowed to do this, not the "patients". Apparently we are not trusted to be involved in what is happening to us due to Departmental Protocols. If he sees fit, my consultant may show me at a later date. Is this an NHS thing, or just Medway Hospital?
Crisp, automaton-like efficency only gave way to a sort of grudging obsequiousness later when I told her about some of the people my partner and I know.................
Into the machine, nothing remarkable, out again about 45 minutes later. Made sure that I had checked that the films would be "read" by tomorrow morning (yes), who was reading them (given the name) and who the Clinical Director was (also given the name).
All diagnostics completed, now just the wait to see the Great Man. No idea when that will be.........
https://www.youtube.com/watch?v=wPBbMbKSZrQ
Back to the hospital at lunchtime to be made radioactive prior to having the scan. 3 hours prior to be precise.
Negotiated the interesting wayfinding to a department tucked away in a corner with the grand title of "Nuclear Medicine". Greeted by smiling person in white overalls who registers my presence and asks me to sit in the waiting room.
Bang on time, summoned by a very cheery nurse (I think she was a nurse) who smiled, chatted and explained, as far as she could, what she was going to put into my vein: sterile water that has been passed over something radioactive. Full marks, she was excellent, even told me the short cut to get back to my car.
3 hours later, back to the hospital again. Made a big mistake by using one of the loos 2 floors below Nuclear Medicine..........wow!, so much for any form of infection control!!!
Greeted by the same nurse with another big smile. Warm, friendly, just what you need. 15 minutes later summoned by name by a woman in a white overall, told to go to the loo again (theirs was spotless!) and to sit on a green chair in a corridor. Invited into the scanning room by the woman in white who checked who I was again and failed to introduce either herself or the very young man standing with her. I asked. Was told their names and that the young chap was a student. Nothing personal, but I do not "do" students" so he was sent elsewhere.
Had to empty pockets and take belt off. Not sure whether that was because it might interfere with the machine or whether they thought I might try to hang myself with it!
Asked if I would be able to take a look at the pictures once the scan had been completed. Horror!! Only doctors are allowed to do this, not the "patients". Apparently we are not trusted to be involved in what is happening to us due to Departmental Protocols. If he sees fit, my consultant may show me at a later date. Is this an NHS thing, or just Medway Hospital?
Crisp, automaton-like efficency only gave way to a sort of grudging obsequiousness later when I told her about some of the people my partner and I know.................
Into the machine, nothing remarkable, out again about 45 minutes later. Made sure that I had checked that the films would be "read" by tomorrow morning (yes), who was reading them (given the name) and who the Clinical Director was (also given the name).
All diagnostics completed, now just the wait to see the Great Man. No idea when that will be.........
Wednesday 24 September 2014
Day 62
According to the National Cancer Targets, my treatment should have started no later than today. Obviously it cannot as I still need to have a bone scan (tomorrow) and the clinicians then need to hold a meeting to decide what treatment they will offer...........
I have already been told who the next consultation will be with, but not when. I think that they do things in sequence rather than in parallel, hence everything takes longer than it needs to. Have sent an email to the consultant to see whether he can move things along a bit and inject some logic. Uncertaintly about the future is one thing, uncertainty about what may or may not happen next week is paralysing!
Put a link to this on Twitter today. Have no clue as to how these things are meant to work, but the local newspaper obviously does; they are "following" me. If you are reading this folks: thanks.
Also sent links to Medway Hospital and to their PALs department just in case they want to understand a real person's experience. If they are reading this: full marks!
I have already been told who the next consultation will be with, but not when. I think that they do things in sequence rather than in parallel, hence everything takes longer than it needs to. Have sent an email to the consultant to see whether he can move things along a bit and inject some logic. Uncertaintly about the future is one thing, uncertainty about what may or may not happen next week is paralysing!
Put a link to this on Twitter today. Have no clue as to how these things are meant to work, but the local newspaper obviously does; they are "following" me. If you are reading this folks: thanks.
Also sent links to Medway Hospital and to their PALs department just in case they want to understand a real person's experience. If they are reading this: full marks!
Tuesday 23 September 2014
Side effects!!
Did not expect to be back here until Thursday, but.................
The drug I was given before the MRI was called Buscopan. You may remember that the young man who injected me did not know what the side effects would be after the event. If he reads on, he will find out.
Had a bit of a dry mouth when I got home, but thought nothing of it. Pulse a bit higher and feeling a bit dizzy, assumed I was coming down with a cold............maybe not!
I know that hospitals do not like you looking at the internet as they say it is better to trust your clinicians and not believe anything you read online. If used carefully though, it can be a really useful resource which contains things like the manufacturer's list of side effects for their drugs. Guess what? Apart from constipation, reduced ability to sweat, urine retention and a few others, common side effects of Buscopan include dry mouth, raised pulse and dizziness!
Hint: if the person administering the drugs cannot tell you about potential side effects, get them to phone a phamacist and ask. or read the packaging that came with the drug.
I will be very careful to make sure I get a full response when they inject the radioactive tracer on Thursday
The drug I was given before the MRI was called Buscopan. You may remember that the young man who injected me did not know what the side effects would be after the event. If he reads on, he will find out.
Had a bit of a dry mouth when I got home, but thought nothing of it. Pulse a bit higher and feeling a bit dizzy, assumed I was coming down with a cold............maybe not!
I know that hospitals do not like you looking at the internet as they say it is better to trust your clinicians and not believe anything you read online. If used carefully though, it can be a really useful resource which contains things like the manufacturer's list of side effects for their drugs. Guess what? Apart from constipation, reduced ability to sweat, urine retention and a few others, common side effects of Buscopan include dry mouth, raised pulse and dizziness!
Hint: if the person administering the drugs cannot tell you about potential side effects, get them to phone a phamacist and ask. or read the packaging that came with the drug.
I will be very careful to make sure I get a full response when they inject the radioactive tracer on Thursday
Day 61: the MRI scan
After a bit of "nudging" by telephone, I was approved for a scan (really nice of the Radiologist!) and went for it today. I had never experienced one of these, but had a rough idea of what to expect......
Trolled on down to Medway Hospital, found the MRI department thanks to a really helpful man standing by the front desk at main reception (the signposting is c***, I would never have found it without his help). Enter the MRI department................
Reception desk, no receptionist but there was a bell push and a handy notice advising me to ring for attention. Rang just as a chap in blue overalls, who looked as if he had recently dipped his head in a bucket of engine oil, popped up behind me. Quizzed me and was obviously, grudgingily, satisifed that I should be there; told me to complete two forms. Easy?? Nope.......no pens!! Off he went to find one.
Meanwhile, the receptionist breezes in. Breath of fresh air! Gives me her own pen, tuts a bit about how the pen pile keeps disappearing, smiles and engages in conversation. Fantastic.
Mr Engine oil returns with a pile of pens, checks that I have completed the forms and leads me to a cupboard. Here I am told to divest myself of clothes (except underwear) and to put anything I value in a locker (I think that he meant money, watch, wallet etc. rather than myself!). A plastic bag which had obviously had many previous occupants was proferred for my clothes!! I was then instructed to put on two gowns: one facing forward, the other backwards "to make sure eveything is covered".
Plastic bag in hand, I was led to the MRI suite proper and met by two more people in blue overalls. No idea what their profession was or what their names were, no introductions, but otherwise polite and smiling. Relieved of the bag and asked to confirm who I was, presumably just in case I was someone with a gown fetish who had sneaked in from the street. Then the fun began.........
I was now told that I had to have an IV (intravenous) injection to stop my guts moving and spoiling the pictures. Asked about side effects, no real answer given. No question about whether I am right or left handed, needle just went into what was, in fact, the wrong arm.
Asked how I get a copy of the eventual pics as I would like to have been involved and could, of course, imagine framing a cross section of my body and hanging it in the loo . Not possible; the only was would be through the Hospital's Legal Department (!) shame............maybe when all this is over.
Given earplugs as the machine is noisy and told that I would have headphones too which would have music of my choice playing. Asked for anything "real" e.g. Clapton, Hendrix, even Led Zeppelin if they were too obscure. Made the young lady smile; she said she would do what she could........
Headphones applied, emergency buzzer in hand, loaded into the machine literally up to my eyes. Noises, then a disempbodied voice in the headphones telling me that it was "about to start Sir". What a racket! Somewhere in the far distance I could hear music, but it was almost completely drowned out by the machine. Sounded the right vintage though. Only when the machine stopped did I hear a snatch of a magic song............
https://www.youtube.com/watch?v=zItIa8TWu1M
How appropriate was that????
Hint: ask them to turn the volume up to 11 before they load you in the machine......unless you like machine noise
Many stops and starts later, I am unloaded. Now I know why young people like "Trance" music. With the rhythmic noises and occasional vibration you can go to a completely different place; who needs drugs after that?
Back into the little cupboard and emerge like Superman from a telephone box. Cheery receptionist asks how it was and is amused when I say it was an amazing fun experience that took me back 30 years without the mind expanding drugs. Did not notice full waiting room until they all burst out laughing.
Escape! Day off tomorrow before being turned radioactive for a bone scan on thursday.............
Trolled on down to Medway Hospital, found the MRI department thanks to a really helpful man standing by the front desk at main reception (the signposting is c***, I would never have found it without his help). Enter the MRI department................
Reception desk, no receptionist but there was a bell push and a handy notice advising me to ring for attention. Rang just as a chap in blue overalls, who looked as if he had recently dipped his head in a bucket of engine oil, popped up behind me. Quizzed me and was obviously, grudgingily, satisifed that I should be there; told me to complete two forms. Easy?? Nope.......no pens!! Off he went to find one.
Meanwhile, the receptionist breezes in. Breath of fresh air! Gives me her own pen, tuts a bit about how the pen pile keeps disappearing, smiles and engages in conversation. Fantastic.
Mr Engine oil returns with a pile of pens, checks that I have completed the forms and leads me to a cupboard. Here I am told to divest myself of clothes (except underwear) and to put anything I value in a locker (I think that he meant money, watch, wallet etc. rather than myself!). A plastic bag which had obviously had many previous occupants was proferred for my clothes!! I was then instructed to put on two gowns: one facing forward, the other backwards "to make sure eveything is covered".
Plastic bag in hand, I was led to the MRI suite proper and met by two more people in blue overalls. No idea what their profession was or what their names were, no introductions, but otherwise polite and smiling. Relieved of the bag and asked to confirm who I was, presumably just in case I was someone with a gown fetish who had sneaked in from the street. Then the fun began.........
I was now told that I had to have an IV (intravenous) injection to stop my guts moving and spoiling the pictures. Asked about side effects, no real answer given. No question about whether I am right or left handed, needle just went into what was, in fact, the wrong arm.
Asked how I get a copy of the eventual pics as I would like to have been involved and could, of course, imagine framing a cross section of my body and hanging it in the loo . Not possible; the only was would be through the Hospital's Legal Department (!) shame............maybe when all this is over.
Given earplugs as the machine is noisy and told that I would have headphones too which would have music of my choice playing. Asked for anything "real" e.g. Clapton, Hendrix, even Led Zeppelin if they were too obscure. Made the young lady smile; she said she would do what she could........
Headphones applied, emergency buzzer in hand, loaded into the machine literally up to my eyes. Noises, then a disempbodied voice in the headphones telling me that it was "about to start Sir". What a racket! Somewhere in the far distance I could hear music, but it was almost completely drowned out by the machine. Sounded the right vintage though. Only when the machine stopped did I hear a snatch of a magic song............
https://www.youtube.com/watch?v=zItIa8TWu1M
How appropriate was that????
Hint: ask them to turn the volume up to 11 before they load you in the machine......unless you like machine noise
Many stops and starts later, I am unloaded. Now I know why young people like "Trance" music. With the rhythmic noises and occasional vibration you can go to a completely different place; who needs drugs after that?
Back into the little cupboard and emerge like Superman from a telephone box. Cheery receptionist asks how it was and is amused when I say it was an amazing fun experience that took me back 30 years without the mind expanding drugs. Did not notice full waiting room until they all burst out laughing.
Escape! Day off tomorrow before being turned radioactive for a bone scan on thursday.............
Monday 22 September 2014
Just do it!
Decided to give myself a present............
Had always fancied the idea of a tattoo (they are not just for the young whatever your kids tell you). Lo and behold, an excuse! I have a favourite tree that I say good morning to every morning as I walk the dog which looks like the celtic tree of life.
Bluebells mean spring and new beginnings to me, so will have one combined with the tree. The next trick will be finding a good tattoo artist who can turn concept into reality........
Had always fancied the idea of a tattoo (they are not just for the young whatever your kids tell you). Lo and behold, an excuse! I have a favourite tree that I say good morning to every morning as I walk the dog which looks like the celtic tree of life.
Bluebells mean spring and new beginnings to me, so will have one combined with the tree. The next trick will be finding a good tattoo artist who can turn concept into reality........
The journey starts
Men: GET YOUR PSA LEVEL CHECKED!!!!
Hey, another boring middle aged bloke who is going to bang on about his prostate, how dreadfully unfair life can be, what it is like to be a victim...................? NO!
I hope that over the coming months this will serve as something useful for anyone else who has to go through something similar, and particularly those who use the NHS in Medway. I will document what happens, who the key people are, give some feedback on how easy (or difficult?) it is to take control over things and, for people using Medway Maritime Hospital, as many shortcuts to the people who make decisions as I can find. Hints will be in blue, important info, in red.
I used to work for the NHS, my partner used to run a major hospital in London and we know a lot of people still on the "inside", so I have a pretty good idea what the problems might be. We shall see.
Partners, significant others, lovers and friends might also like to take a look, or you might like to share some of the posts with them (I will warn if there are any that are not "partner friendly"!)
like most men, I gave virtually no thought thought to my prostate apart from the obvious. As long as it was still working and not causing me any bother, why should I bother it? Then a friend was diagnosed with prostate cancer and asked me when I last had my PSA level checked. It had never crossed my mind.
Breezed nto GP, asked for a PSA test and was told "no chance", you do not have any symptoms. Made a couple up and........hey presto!.........PSA done. Came back as way too high, so off I went on the magical NHS journey with Medway Hospital
Important bit of info
The NHS has some target times when cancer is suspected; this is the first. From GP referral to first appointment with a specialist must happen within 2 weeks.
1 week and 6 days later, in the evening, I saw the Registrar (bottom of the Dr heap). Clinic not signposted and no-one at main reception desks to ask. Hint: walk down random corridors shouting "hello". Produced a lovely nurse who helped me find the hidden clinic.
........and so to a biopsy 2 weeks later and promised the result in another 2. Will spare you the details; if you want the lowdown on this one, let me know.
3 weeks later, no word from the hospital, called them and emailed them: not a lot back. Got GP to ask for a copy of the results direct from the lab. They were put in the post to the GP immediately. Magically an appointment letter from the hospital arrived 24 hours later.
Hint: your GP can be your friend
If you do not want to know how to tell whether you have been diagnosed with cancer before you see the consultant, skip the next bit............
The letter has a code on it for who you will be seeing. In my case it said "MDT" which is short for multi-discipinary team. These are the folk who look after people with cancer.
Another week goes by...........
4 weeks after the biopsy........Meeting with consultant Dr Bhat (going up the Dr heap) and "Clinical Nurse Specialist for Urological Cancer" . Despite telling them that I knew the diagnosis, both insisted on sticking to their scripts. Tedious, but maybe it is thereapy for them or they get their knuckes rapped if they do not; who knows? One thing neither of them knew though was the national target for treating people with cancer:
Important info
Hospitals have a 62 day target between the GP referring and treatment starting for people with cancer
To get to Professor Sheriff (top of the Dr heap) and the Oncologist, MRI and Bone Scan next. Easy? Nope. Took several phone calls from me to get these organised in time for the Great Man's team meeting after which he may offer me an appointment. For info, it is now Day 59 and still no treatment plan in sight, let alone treatment starting. Oops, big fail by Medway Hospital!
Hey, another boring middle aged bloke who is going to bang on about his prostate, how dreadfully unfair life can be, what it is like to be a victim...................? NO!
I hope that over the coming months this will serve as something useful for anyone else who has to go through something similar, and particularly those who use the NHS in Medway. I will document what happens, who the key people are, give some feedback on how easy (or difficult?) it is to take control over things and, for people using Medway Maritime Hospital, as many shortcuts to the people who make decisions as I can find. Hints will be in blue, important info, in red.
I used to work for the NHS, my partner used to run a major hospital in London and we know a lot of people still on the "inside", so I have a pretty good idea what the problems might be. We shall see.
Partners, significant others, lovers and friends might also like to take a look, or you might like to share some of the posts with them (I will warn if there are any that are not "partner friendly"!)
like most men, I gave virtually no thought thought to my prostate apart from the obvious. As long as it was still working and not causing me any bother, why should I bother it? Then a friend was diagnosed with prostate cancer and asked me when I last had my PSA level checked. It had never crossed my mind.
Breezed nto GP, asked for a PSA test and was told "no chance", you do not have any symptoms. Made a couple up and........hey presto!.........PSA done. Came back as way too high, so off I went on the magical NHS journey with Medway Hospital
Important bit of info
The NHS has some target times when cancer is suspected; this is the first. From GP referral to first appointment with a specialist must happen within 2 weeks.
1 week and 6 days later, in the evening, I saw the Registrar (bottom of the Dr heap). Clinic not signposted and no-one at main reception desks to ask. Hint: walk down random corridors shouting "hello". Produced a lovely nurse who helped me find the hidden clinic.
........and so to a biopsy 2 weeks later and promised the result in another 2. Will spare you the details; if you want the lowdown on this one, let me know.
3 weeks later, no word from the hospital, called them and emailed them: not a lot back. Got GP to ask for a copy of the results direct from the lab. They were put in the post to the GP immediately. Magically an appointment letter from the hospital arrived 24 hours later.
Hint: your GP can be your friend
If you do not want to know how to tell whether you have been diagnosed with cancer before you see the consultant, skip the next bit............
The letter has a code on it for who you will be seeing. In my case it said "MDT" which is short for multi-discipinary team. These are the folk who look after people with cancer.
Another week goes by...........
4 weeks after the biopsy........Meeting with consultant Dr Bhat (going up the Dr heap) and "Clinical Nurse Specialist for Urological Cancer" . Despite telling them that I knew the diagnosis, both insisted on sticking to their scripts. Tedious, but maybe it is thereapy for them or they get their knuckes rapped if they do not; who knows? One thing neither of them knew though was the national target for treating people with cancer:
Important info
Hospitals have a 62 day target between the GP referring and treatment starting for people with cancer
To get to Professor Sheriff (top of the Dr heap) and the Oncologist, MRI and Bone Scan next. Easy? Nope. Took several phone calls from me to get these organised in time for the Great Man's team meeting after which he may offer me an appointment. For info, it is now Day 59 and still no treatment plan in sight, let alone treatment starting. Oops, big fail by Medway Hospital!
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