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Searched on the internet as soon as he had the diagnosis. Was able to distinguish between useful information and 'rubbish'
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My wife and I repaired to a Starbucks and I broke the news to her over a cup of coffee [sigh] and suitable words of support and reassurance were extended. And then began the big quest to find better information and figure out what to do.
Yes.
So it, although it was a shock it was not a shock of such magnitude as to send me to pieces. It was a shock of sufficient magnitude to send me straight onto my broadband to start figuring out what do I do to attack this thing.
So the Internet has been really helpful to you?
The Internet has been wonderful for me, yes. Although it's, as on almost anything you might search for on the Internet it's almost simultaneously a blessing and a curse. The more skilled and gifted you are at differentiating between the rubbish and the good stuff the more useful the Internet can become but there is no shortage of rubbish out there. You really do need to trawl through information sources quite discerningly. And really what I was trying to do when I went through all my searching and surfing was triangulate different sources of evidence and place slightly greater reliance on streams of evidence where they were all saying the same thing and they appeared to have good evidence on their side when they were saying it. And I took a slightly more dismissive line on the less well-researched and slightly more flaky testimony which is out there in huge abundance. |
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Found the DIPEx site (now Healthtalkonline.org), and talking to a former patient, useful sources of other men's experiences which helped him to know what to expect.
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But did you find patient experiences helpful at all?
Yes, yes I did and my two main access routes to the experiences of other patients were through DIPEx (now Healthtalkonline.org) and through The Prostate Cancer Charity. Dealing with those in turn there was nobody on the DIPEx site talking in detail about the specific procedure that was my number one favourite intervention. But there are plenty of people talking about or writing about their experiences of prostate cancer generally and the assorted tests and investigations that are associated with prostate cancer. And there were people talking about other forms of surgery which at least bore a passing resemblance to what I was thinking of having done. And yes it is very useful to be able to contextualise my own anticipations and expectations and thoughts against the experience of somebody who's been through it, very useful particularly so given that the vast majority of people who are on the DIPEx site are speaking in plain English and they are speaking very candidly about their basic human experience. So it simply adds very useful complexion to the slightly more academic or intellectual understanding that I was building up through other information sources. |
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Hopes that the information provision in the NHS will improve so that everyone will be directed to the sort of information he found for himself on the internet.
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And I ended up being very heavily reliant on my own initiative to seek out information that had not been spontaneously provided to me by any of the professionals with whom I came into contact.
Now I'm lucky in a number of respects. I'm lucky in the sense that I'm pretty proficient and experienced in navigating around the Internet and I know how to find good information. I'm lucky that I have fast broadband access at home and I'm lucky that I've spent 31 years working in the National Health Service either as a clinician or as a manager. So that also helped to guide me fairly rapidly towards the good stuff. But had I had, if I hadn't had those advantages I think I would have found it really quite difficult to arrive at enough information to make a truly informed judgement and decision about the course of treatment that suited me best.
I hear fairly encouraging things in the NHS about the imminent advent of information prescriptions for patients and I know that there are a number of resources out there not least NHS Direct and particularly NHS Direct Online which is a very useful resource amongst many other useful resources. But I would hope that if in 20 years time either of my sons were to have the same condition by that stage we would be in an NHS that would equip them spontaneously with a much richer, more detailed, more specific, more evidence-based cross section of literature. And then in addition to the literature that is spontaneously provided I would hope that they would then be signposted towards other specific sources of information that could be relied upon rather than being left having to form their own judgments about what's the good stuff and what's not the good stuff. |
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He felt that there was a lack of concern for privacy and dignity during investigations such as the prostate biopsy.
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Privacy and dignity I think remains a challenge for the National Health Service. And much as with health information for patients I did encounter some truly fantastic practice from some truly admirable practitioners but I also had some exposure to the other end of the spectrum, people for whom privacy and dignity of a patient is clearly not a particularly dominant concern. There were occasions when whilst going through some pretty undignified procedures either with the biopsy for example or the cystogram for example, there were occasions when doors were flung open and people would just walk in and out and not introduce themselves and they clearly had nothing to do with what was going on with me. And whilst I can tolerate that up to a point in a dentist's chair if the dental nurse walks in and out it's quite different from when, put bluntly, your ass is sticking up in the air.
I'll illustrate it with just one or two examples. At the pre-operative outpatient stage after the TRUS biopsy (the trans rectal ultrasound biopsy) whilst waiting in a crowded corridor full of other patients and their relatives a clinician whom I'd not encountered at any stage during the procedure itself and who had her coat on ready to leave stuck her head into the crowded corridor to shout in my general direction that I should expect to see blood in my semen for a period of time after this biopsy. Now admittedly that's useful information to have, I don't deny that but the circumstances under which the information was delivered was far from ideal. It caused all heads to turn in my direction for what was for me the unique experience of being in a crowded corridor of a bunch of people who all were probably thinking about my semen [laugh] and I'd rather they weren't. Now that was a highly avoidable example. It would have taken literally just seconds longer for me to be taken to a room somewhere or even just behind a curtain somewhere for this information to be imparted to me with a little greater discretion. So I firmly believe that that has nothing to do with resources. It has to do with personal choice, personal practice. It has to do with training. It has to do with culture. Perhaps it has also has to do with managerial performance management practice because these things go on because we work in a system that allows them to go on. If we stopped allowing them to go on then they wouldn't go on. So that, that is one example.
So it's at that kind of level that I think that privacy and dignity are not always well attended to. Although I hasten to add that I did have plenty of exposure to the other end of the spectrum as well. Some really admirable clinicians and wonderful human beings who did a first class job of plying me with information and also attending to my privacy and dignity. They deserve the credit but I'm just making a particular point about what I hope would be the minority of people at the other end of the spectrum. But it's a minority that can make a fundamental difference to the patient's experience of the process of care. |
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Explains that the robotic device helps to eliminate the surgeon's hand tremor and allows great precision of movement.
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It's a robot-assisted laparoscopic radical prostatectomy. The robot-assisted part of that title is a bit of a misnomer because it does not involve a true robot in the sense of a machine that has volition and programming of its own. It's a so-called master/slave system. So if you can picture it, essentially what it entails is a surgeon sitting at a computer console a little like a very expensive child's computer game console but worth a few more million quid than an average child's game. Other assisting surgeons will make small incisions, in total 6, sorry 5 incisions are involved for a variety of ports to be inserted with implements or in effect binoculars attached to them.
Those ports are manually inserted by the assisting surgeons and once inserted, the principal surgeon takes over. The principal surgeon is in the operating theatre although in theory given the wonders of modern technology the surgeon could be on a different land mass or a different continent operating on somebody. But in practice of course the surgeon is in the same operating theatre and what he or she would be looking at is a 3-D image on screen of what the robot ports inside the patient's abdomen are seeing.
And the surgeon is able to manipulate the various robotic ports that have been inserted into the patient and is able to do so having scaled up or down his or her movement relative to the robot's movements. So in effect put, put simply you can task the robot to say let every two millimetres of my hand's movement equal 0.2 mm of the robotic arm's movement so that you can thus get extreme precision of movement guided by a 3-D image that the surgeon is seeing on screen. What the robotic device will also do is eliminate any manual tremor that might otherwise be there for a surgeon. And this of course is part of why I was drawn to this procedure in the first place. If you're tinkering around crucial nerve bundles that are responsible for amongst other things, erectile function, I was very drawn to the idea of great precision of movement with no tremor. So essentially it's a master/slave robot system, manually assisted insertion of the robotic ports and then the principal surgeon takes over on the computer console. |
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How he decided to have this new type of surgery.
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I then spent the remainder of December, all of January and all of February voraciously consuming information from the Net, and from The Prostate Cancer Charity who I found consistently marvellous incidentally, and from a variety of other sources including various clinical friends in the NHS. And went through quite an organised process of arranging my thoughts and judgments about the competing merits of the available treatment options. And I spread-sheeted those in a sort of a decisions matrix.
So effectively how that worked was I took a fairly early view on what did I want as outcomes from this saga and how would I weight each of those outcomes relative to each other, so they each then carried a weighting. And then as far as I could by trawling through the evidence and information available to me I then rated each of the available options. So I looked at open radical prostatectomy, laparoscopic radical prostatectomy, robotic radical laparoscopic prostatectomy, high intensity focused ultrasound, brachytherapy, external beam radiotherapy and the, the less plausible ones including cryotherapy for example which I think I ruled out very early on as an option to which I was patently unsuited. But, but I went through and scored each of those options using a, a weighted arrangement and really arrived at a pecking order that had two options scoring almost equally at, at the top as it were, one of which was a time-limited option and it was to do nothing, to simply content myself with watchful waiting, repeat PSA tests and biopsies at sporadic intervals and then intervene when the necessity arose to intervene. And the other was robot-assisted laparoscopic radical prostatectomy.
In the end prior to my follow-up outpatient appointment in February I was erring very much on the side of decisive intervention through surgery largely on the basis that the watchful waiting approach would almost certainly culminate eventually in a decision to intervene but by that stage A) I would be older and correspondingly not quite such a good anaesthetic risk and secondly I would be completely reliant on the accuracy and timeliness of investigative tests to chart accurately the progress of the disease. And I didn't feel comfortable with the risk that watchful waiting might ultimately place me in a position where not only was I a poorer anaesthetic risk but also the disease had progressed to a more grisly stage. |
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The pre-operative assessment took place two weeks before the operation.
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I was sent for a pre-operative assessment in late March so just a couple of weeks before admission for height, weight, blood pressure, assorted blood work and other analysis to be done to make sure that there was nothing that would stand as an obstacle to my admission for surgery. That was all fine, so the admission went ahead.
I was admitted on the Thursday the 12th of April 2007, the day before surgery. I was, I underwent surgery then on the rather inauspicious date of Friday the 13th of April but of course I don't believe in superstition because I think it brings you bad luck. |
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The specialist urology nurse made sure he knew how to do pelvic floor exercised correctly.
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My hospital stay was a 3-day stay. So there was a pre-operative day, an operative day and one post-operative day and then I was discharged on that first post-operative day. So the day after surgery I was discharged.
In terms of the process the pre-operative day I guess was relatively standard for any surgical procedure. It was about being clerked in, having assorted bloods and other investigations done, signing various pieces of paper, being visited by your anaesthetist, being visited by the surgeon, being visited by assorted other doctors and nurses. So, for example, I was seen by the specialist urology nurse. I was seen by the specialist continence nurse to make sure that I had an accurate grasp of how to do pelvic floor exercises correctly and appropriately and at the appropriate frequency and so on. So that first pre-operative day was just a blur of a steady succession of people wanting me to sign things or wanting to tell me things or wanting to investigate or analyse or stick needles in me or whatever. And it was all perfectly straightforward other than the usual doldrums of hospital food. |
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The operation went smoothly and he had no pain when he woke up from the anaesthetic.
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On the operative day I was starved from the preceding midnight or nil-by-mouth from midnight. I was taken down to theatre at about 10:00, 10:30 in the morning. I was not given a premed. I didn't need a pre-med. I believe premeds are still used for patients who are more agitated or anxious about their surgical process but I was fairly relaxed about it so I went down unpremedicated to theatre. Spent a short time in the anaesthetic room where all the documentation was checked. My identity was checked. All that was fine. A venflon [plastic tube] was put in my hand, I think only on one side and I was put to sleep so to speak.
And the next thing I knew I was waking up in recovery. I'm told that on waking up and I can't imagine why this would have happened because it seems quite out of character for me but I'm told that on waking up my first words were that I wanted a chicken chow mein and a bottle of Budweiser [laugh] which I wouldn't normally want as soon as I'd woken up but there we are that's patients recovering from anaesthesia for you. I do have a recollection that in the recovery room after surgery I was entirely pain free, probably still slightly euphoric hence the chicken chow mein and Budweiser reference but I was entirely pain free and I felt lucid whether or not I was lucid I think is very doubtful but I felt lucid.
I do have a recollection of seeing other patients also in the recovery room. Some who were fully screened but one of whom, a rather large West Indian lady was not adequately screened and some quite intimate things were being done which frankly I ought not to have seen. So there's that privacy and dignity thing I still think probably doesn't feature as prominently in the mindset of some clinicians as it ought in hospital.
Anyway the recovery from anaesthesia was uneventful and relatively swift. I was taken up to the ward at about 3:00 in the afternoon. So left the ward at 10:30. I was back on the ward at about 3:00 in the afternoon where I spent a couple of hours asleep and then was quite awake and alert by about 6:00 pm, slightly nauseous but no more than I would expect after surgery. I treated food and fluid with extreme caution on that first day. I started out with small sips of fluid gradually escalating to a cup of tea. I don't think I actually ate anything on that first day. I could have done. There was no reason from the nurses' or doctors' point of view why I shouldn't have done but I've had an anaesthetic once before in my life and recall eating a little too swiftly after anaesthesia and regretting it almost immediately as did the cleaners. |
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He got out of bed the next day and went home with a supply of two different types of catheter bag.
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On the first post-operative day I got out of bed unaided because I didn't need help. I'd been encouraged to get out of bed. Initially just sat in a chair beside the bed feeling mildly sorry for myself because by that time I was getting some discomfort, more related to movement. It was still the case that at rest I was completely comfortable but when I moved there was, there was pain but I had six small incision sites including the drains so pain was no great surprise.
I was discharged from hospital with a small supply of two different types of catheter bag, one being a day bag which is strapped to the leg with a sort of elasticated Velcro strap and it has a capacity of I think 750 ml or thereabouts. And that has a little valve at the bottom to allow you to drain the bag in a toilet whenever you need to. And I was also equipped with night time bags which have a capacity of I think about a litre and a half or two litres. So unless you have an excessive fluid consumption in the hour or two before you go to bed that's more than adequate for an average night time.
What I was not equipped with and I don't even know whether such things exist was any kind of a catheter bag stand or rack or something to actually put the thing on. They had these things on the ward, little racks that they can then hang on a chair or on the side of a hospital bed but I wasn't equipped with anything like that to go home with. So I needed to rig up a sort of a Heath-Robinson arrangement at home particularly at night time of course with a night time bag to make sure that the basic hydrodynamics of things were properly managed because you can't expect water to flow uphill as it were. So you need to arrange things. And it took me a couple of nights to get the hydrodynamics right with that. |
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He recovered quickly and was able to go outside for a short walk two days after returning home. He had to take medication which led to diarrhoea.
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I confined myself to my own home and garden for the first two days at home, simply because movement was uncomfortable and also because maybe this is a male psychology thing but even though I knew nobody could see the catheter bag when I was out walking around outside of my own home just getting used to the idea of having a catheter bag strapped to my leg when I'm walking past neighbouring houses. It took me two days to get to that point where I was willing to take the plunge and take a stroll. But from Day 3 really onwards I walked further and further and probably by Day 5 I was walking maybe a mile a day pretty slowly but nevertheless a mile a day. And the only reason it wasn't more was that I would need to get back to drain the catheter bag. Sometimes you can take advantage of a handy tree somewhere but it's actually not that quick a procedure to drain a catheter bag.
And do you want to say anything else about recovery?
In the first couple of weeks I was still taking quite powerful antibiotics. Doubtless they were doing their job from an antibacterial point of view but they had a powerful gastro-intestinal affect. I was eating and drinking normally but very definite signs of intestinal hurry that left me actually feeling a little bit debilitated and uncomfortable.
So diarrhoea sometimes?
Just so, yes. Compounded by the fact that the surgeon had been quite insistent that whether I thought I needed it or not I should persist with taking lactulose. So there was I taking powerful antibiotics and having some relatively acute diarrhoea also taking lactulose. Anyway it lasted for about 10 days and then subsided pretty quickly and it was bearable. It was an inconvenience at worst no more. |
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He was delighted to find that he was not incontinent after the catheter had been removed. He was off work for only four weeks.
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They elected to keep me in or rather they invited me to stay in for one night after catheter removal so that I could have in the safe surroundings of the hospital the experience of going through a full night without a catheter and with bladder filling up overnight so to speak. And then they particularly wanted to check that I could void, empty my bladder properly in the morning. So that was fine. One extra night in hospital, pleasant enough. No big deal. The following morning up bright and early, quite mobile and to my great surprise my first post-catheter removal night had been an entirely dry night. I'd not been led to expect that. I'd been led to expect the near certainty of torrential urinary incontinence for quite some time after catheter removal or after surgery more generally. But my first post-catheter night was a dry night and indeed every night since with only two slight exceptions have been also dry. So I was discharged the following morning after I had demonstrated that I could void my bladder ok and that I was pain free and comfortable. Back home and I've just gone from strength to strength ever since.
And how many weeks did you say you were off work?
I was off work in total for four weeks. So that was 10 days during which I had the catheter and then roughly three weeks after that point. I, I could probably have resumed work earlier than that. Indeed to a degree I did resume work earlier than that because I dabbled at E-mails and odd bits and pieces from home. |
