Ouch!

One of the conditions for being let home to recuperate is that I have to take a blood thinner called Clexane for three weeks after my date of discharge. Which would be fine, but it’s delivered by subcutaneous injection.

By me.

And I am, of course, as regular readers will know, more than a little needle-phobic.

The Clexane comes in boxes of individually wrapped, ready to inject, completely self-contained syringes that are designed to be pretty much foolproof. All I have to do is follow the instructions. It’s not difficult – take the thing out the packet, remove the safety cap, “pinch an inch”, stick the needle in as far as it will physically go, and depress the plunger until it clicks. Then remove and throw the whole thing into my florescent yellow sharps box.

Except sometime it’s almost painless, while other times it stings like the devil. Meanwhile I’m feeling light-headed and vaguely sick. And because this is a blood thinner, if you happen to pick a spot with a vein or capillary under it, it bleeds for ages. My thighs and tummy are now covered in a series of little spots where I’ve self-injected, and managed to either provoke a bleed, or a big bruise. I look like the proverbial pin-cushion.

The good news is that as of tonight, I only have four more syringes left. Roll on the weekend, when I will be able to look forward to going to bed without having to jab myself with a needle first!

The heat is on

The last week has been wall to wall sunshine, with the temperatures edging 30c every day, and not falling much below 15c at night. The weather has been hotter in the southeast of England than in many parts of the Mediterranean. For many of us, it’s been even hotter than those nighttime figures, simply because there has been little or no breeze to help get rid of the heat that has built up during the day. And whilst I’ve been loving every minute of it, basking in childhood memories of the summer of ’76, I’ve also been struggling to cope with it too.

If I’m honest, I’ve gotten into a series of comfortable routines that normally allow me to manage my ileostomy without giving it too much extra thought. But the increase in temperatures, especially at night when the humidity can be high too, has been quietly playing havoc with my hydration. This showed up fairly promptly as a series of blinding headaches, usually starting mid-morning, backing off a little after lunch (when I’d have something to drink), then coming back with a vengeance later in the afternoon. The first couple of days I didn’t even think about causes – I just took a couple of paracetamol (which didn’t work!) and soldiered on.

And then the penny dropped.

So since then I’ve been consciously trying to drink a lot of extra water, and in general it seems to be working, though I still seem to be very much more lethargic than normal. But the point of this post is that even though I know all the signs of dehydration, and that I should be looking out for them in myself, it still took me a couple of days to realize what was happening and adapt. Which is not very smart.

.דער מענטש טראַכט און גאָט לאַכט

So yesterday morning the alarms (yes, several – I didn’t want to be late) all went off at 5:30am, and we commenced the day with military precision. I dashed downstairs to have my last couple of glasses of water before the nil by mouth regime cut in at 6am, more in the hope of giving the anaesthetist a fighting chance of finding a vein than for any real sense of thirst. Back upstairs to dash through the bathroom, and then the last minute packing of my hospital bag, before heading out into the traffic at 6:30am.

We did well, negotiating the motorway traffic and early morning rush into Portsmouth without too many problems. When I’m travelling at those times, it always surprises me how busy the roads are between about 5:30 and 6:30; almost a precursor to the main rush hour between 7:30 and 8:30. I must admit I wasn’t paying much attention yesterday though.

We arrived at the hospital with about 5 minutes to spare, so I walked up to the ward to check in while “L” parked the car. It was strange going back into the ward where I spent nearly 5 weeks last year. Nothing had really changed, including the staff, who had seen my name on the admission sheet and were looking out for me. It’s strange (and probably on some level, just plain wrong) to be greeted on sight, by name, in those circumstances. But it’s also hugely reassuring to realise that the people there know me and care.

We were ushered off to a consultation room where my enormous folder of notes made an appearance, along with the duty nurse, and we went though the admission paperwork. I was issued with a set of hospital-standard surgical stockings, and the dreaded hospital gown. Then the nursing staff changed over to the day staff, most of whom I also knew from my previous visits, which was really nice – there was a steady flow of visitors popping into the room just to say hello and wish me well, which helped to distract me from thinking about the operation to come.

The anaesthetist stopped by to see me at about 8:30am, and went through my personal history again, and then looked back through the notes from the previous anaesthetists who had looked after me. I really liked him – a cheerful chap, who also managed to be completely no-nonsense and focused at the same time. Just as well really – you want the guy keeping you asleep but alive during a long operation to be on the ball!

Then shortly after he left, my new Urologist dropped by to talk to me. We’d not met before, so the dynamic was interesting; feeling for a mutual level to talk at, while also going through the social thing, and getting the job done in terms of explaining what he needed to. Again, I came away from the conversation very reassured that I was in good hands. His problem is that they don’t really know why my kidney isn’t working properly, and what he would have to do to help me would depend very much on what he found when they got me open. As he rather wryly pointed out, my surgeon had consented me for practically every urological possibility that might arise.

And then we waited for my main consultant to drop by. And waited. And time passed. An hour. More.

Oddly, I remember thinking I wonder what happens if my consultant has been taken ill? Killed in a car crash on the way to work? And then looking at the time again (10:30am) and thinking that something clearly had to have gone wrong for an operation that was scheduled to start at 8:30am to not be under way yet. And as though my thinking that thought prompted the reaction, my consultant arrived and explained that he had had to cancel my operation.

The problem was that due to the scale of my operation, the surgeons wanted me to spend the first two nights and days after the operation in intensive care (now apparently called ITU, or Intensive Therapy Unit) where I can be constantly monitored. And there were no ITU beds available for me to go into yesterday. While we had been waiting around for the operation to start, the surgical team had been trying to find a way to get me an ITU bed (and had failed), or to go ahead without the need for the ITU stay (and had decided it was not safe to do so). Which finally only left them with the option to reschedule me to another date.

You might ask why (since this is being funded privately) hadn’t the ITU bed been booked in advance? The answer is that ITU beds are stupendously expensive, and are always in limited supply. They are a resource that is so precious that clinical need always overrides everything else. As I understand it, there is a booking list for ITU beds for elective patients, but true emergencies (bad car crash, for example) always come first. So, before an elective operation starts, they make sure there is going to be enough space for the patient in ITU at the end. If there isn’t then the operation doesn’t start. And that’s what happened to me.

In the grand scheme of things, this makes sense. If it was me (or one of my kids) in the road accident, then that’s exactly what I’d expect to happen. But it does feel a bit frustrating at the time. And my consultant was obviously frustrated too, as it meant that the team he’d assembled to operate on me all day were now all running around trying to rearrange their surgical lists to pull other patients into the space that I’d just vacated.

And the title of this post? You don’t speak Yiddish? Me either – but apparently it’s a Yiddish proverb that roughly translates as “Man plans and God laughs”. So true.

Informed consent

On Thursday afternoon I got to see my surgeon again. This was essentially a last chance for me to ask any questions that I might have about my coming operation. But of course, there wasn’t much more to discuss. We planned all the things we were going to try, and the order we would try them over a year ago. We’re just executing the plan we made then. There are no other options left for me to try now, so it’s really just a case of turning up and getting on with it.

But it did give my surgeon an opportunity to get my consent for the operation. I’ve done lots of these; it’s a large A3 form, in carbon-copy triplicate, full of pro-forma small print, with some spaces where the surgeon details what he is planning to do to me, what the outcome will hopefully be, and what might go wrong. We both get to sign and date it.

The thing that gave me pause this time was the “what might go wrong” section, especially as my surgeon expanded on the written details to explain in more detail what he actually meant by some of the rather brief phrases. Of course, I know that the nature of informed consent is that he must tell me about all the possibilities, even when they’re very remote. But even so, it was sobering to see things like “Death”, “Nephrectomy” (removal of a kidney), “Haemorrhaging”, “Sepsis”, “Loss of sexual function”, “Loss of bladder control” actually written down on the form. For once I find myself rather wishing I didn’t know about any of that stuff – I’d prefer someone to just reassure me that it will all be OK.

Ah well. Too late now; you can’t take knowledge away. So we signed the form and talked about our kids. As you do.

Here we go again

I spent Thursday morning back in hospital for all my pre-admission checks. It all started with lots of questions about my previous medical history. This was rather amusing, as the nice nurse who was running the session had all my notes with her, but had obviously decided that it would be easier to ask me what I’d had done to me and when, rather than trying to tackle my folder, which is now some four or five inches thick.

It was a good plan. But I’m now at that stage where I can only remember the key events; the rest is a bit of a blur of procedures, anaesthetics, hospital visits and hospital stays. In the end we settled for me outlining the major items, and she agreed to look up any details that she needed later.

I aced the ECG test again, but was a bit depressed at how much weight I’ve put back on while I’ve been struggling with my current temporary ileostomy, and not able to exercise. It’s going to be a major personal goal to start getting that back off again while I am recovering from this operation, and then continue to improve my general level of fitness afterwards. Sadly, about 50% of colostomy patients end up with hernias, and I figure a good way to make sure I don’t end up part of that statistic is to build up a good level of general physical fitness.

As usual, they wanted a selection of samples from me; swabs from nose and groin to check for MSRA were easy, as was the urine sample. The three vials of blood I expected to be a real issue, but it turned out to be surprisingly easy; it seems that the veins in the crook of my elbow are still in good working order.

And with that, I am declared healthy enough to be operated on. I have to admit myself on Wednesday morning before 7am. I must not eat anything after midnight of the night before, and can only drink water from then until 6am, after which it’s nil by mouth until after the operation. I guess it’s one way to start the diet.

Health update

To be fair, I’ve not much to report at the moment. Fundamentally I’m waiting for a convenient time to finalise my treatment with either a permenant ileostomy or a permenant colostomy. Since my health is reasonably stable at the moment, and I’m generally coping well with the day to day business of life, we’re working towards a time in July for that. Since raising the issue of perhaps opting for an ileostomy rather than the more usual colostomy, I’ve done a reasonable amount of research into each and how they would fit with my lifestyle. Needless to say, they both have advantages and disadvantages.

In a lot of ways the ileostomy looks a lot more attractive at this point in time; it’s a known quantity (since I already have one) so I know I can cope with it and continue to work. However, if I’m brutally honest, I’m just hanging on in there, rather than actually enjoying life. It’s too limiting, and has too many awkward side-effects to be easy to live with, especially long term.

The colostomy on the other hand, is an unknown quantity, and as with all these things the medicial community have an infuriating tendency to give you a very rose-tinted vision of what life could be like with one. In fact, depending on how well the colostomy turns out I could end up with anything from a much improved quality of life, to (whisper it!) a complete nightmare. This seems to be largely determined by how much colon the patient has left, so the fact that my cancer was so low in my colon helps here; my surgeon feels that I’m likely to have a “good” result from a colostomy. But of course, he cannot guarantee it.

But perhaps the deciding factor for me was based on a comment from one of the nurses I was chatting with, who brought up the issue of my life much further into the future – something I’d not really considered up to that point. Ultimately a patient with a colostomy that can no longer actively manage it themselves can still live (largely) independantly in their own home with a small amount of nursing daycare. A similar patient with an ileostomy would have to be moved into fulltime care in some form of institution. I’m certainly not planning to end up unable to manage, but I’m now much more aware of the uncertainty that the future can hold, so I’d rather hope for the best, and plan for the worst.

So on balance I’m going to take the colostomy. And (as the same nurse said) if the absolute worst were to happen then I could always convert a colostomy into an ileostomy, albeit with another huge operation. But choosing the ileostomy now would leave me with no other options at all.

And I’m convinced that having a Plan B is always a good idea.

Updated again

Much to my shock, and some embarrassment, I’ve just realised that it’s been a month since my last update. In my defense I’ve been spectacularly busy recently (both at work and with my family) and not a lot has happened on the medical front in that time. Until today.

There was a positive output from my various tests; namely that there are some signs of improvement in the output from the Gastrografin test. That’s not to say that the abscess has healed – nothing so dramatic – but that there are signs of improvement. Which means we keep on fighting.

On the other hand, the results from the MAG3 Renogram were far less positive. The function of my left kidney is continuing to decline. The split of filtration between my kidneys is now about 70/30, rather than the normal 50/50. So my left kidney is down to 3/7th’s function (about 43%). This is still more than enough that were I to lose my right kidney in some catastrophic accident, I could live on the left without dialysis, so it’s important to try to preserve that remaining function.

And so we’ve spent the last couple of weeks planning what to do about the kidney problem, culminating in my coming into hospital today to have the urologists give me a serious going over. Under a general anaesthetic, thank goodness. The high level plan was to do a more thorough endoscopic investigation, including some work with contrast agents and x-rays to see if the problem was a stricture in the ureter, or constriction of the ureter due to external pressure. My urologist also decided to draft in some assistance from a urologist who specialises in endoscopic treatments.

And so today I checked back into hospital.

After a morning of pre-op tests (including a game of “chase the vein” to draw some bloods) and catching up with all the people who I’ve got to know so well here, I got taken down to theatre first thing this afternoon. Only to discover that despite my surgical team booking the necessary radiological kit well in advance, someone had pinched it for a different operation, much to the frustration and embarrassment of my team. It did make me smile to see that even in a hospital the same human games go on.

Once we’d rounded up all the necessary kit, we did the usual dance with Fentanol and Propafol, and I blinked and woke up in recovery again. I love that trick!

And the conclusion is that the narrowing of the ureter is confined to the lowest point of the ureter, nearest to the bladder (and my abscess) and is caused by external pressure. Apparently there was considerable discussion about the merits of trying to effect a cure by going ahead and dilating the ureter with a balloon catheter, but the final view was that the potential advantages were significantly outweighed by the risks of introducing infection into my urinary system. So for now the urologists have chosen to restent that ureter again which ought to preserve the function I have while we continue to deal with the abscess. Rather sensibly they want to ensure that the stent really is maintaining my kidney function adequately, so they’ll schedule another MAG3 renogram for me in a few weeks time.

Clearly the hope here is that once the abscess is dealt with, the pressure on the ureter will go away, and (ideally) no further intervention will be necessary. And if intervention is required then at least there will be no infection floating around to add any complications.

And as before, the ultimate plan is that if we can’t resolve the abscess then they’ll just sort out everything at once in one massive operation to end all operations. Fun.

Update

Over the last couple of days the doctors have been busy with me again. I’ve had another MAG3 renogram, a gastrografin test, and a detailed MRI of my pelvis, kidneys and ureters. It’s been a fun-filled couple of days.

I’m now waiting for all those diagnostic tests to be interpreted, and feedback to go back to my surgeon, who will coordinate that and pass it all back to me along with whatever recommendations he thinks most appropriate.

The radiographers running the MAG3 renogram were first up. And very close-mouthed too. They wouldn’t tell me anything, or show me any of the pictures they were taking, which was a bit frustrating. Especially as the whole process took 4 hours. Mind you, a good proportion of that was them trying (and largely failing) to cannulate me, which was quite amusing when viewed in retrospect. Not quite so much fun at the time when I’ve got two of them working on both my arms at once, vying to see who can find a usable vein first. Now I know what a pin-cushion feels like!

Obviously, I know that my left kidney will be reduced function compared to my right. It won’t have improved since the last test. But the key question is, is it now stable, even though they have removed the stent? If it is, then all is good. If not then the urologist is going to want to take some actions fairly quickly to try to rectify the situation. And if he can’t solve it, my surgeon will want to start thinking much more seriously about moving me along to the colostomy. So I’m really just hoping for signs of stability.

The gastrografin test was as unpleasant as usual; having said that, it is somewhat mitigated by the delightful staff who administer it. The radiographer and consultant radiologist are lovely, and genuinely make the process a lot easier to bear. The consultant radiologist tells me that the abscess looks very well defined, but couldn’t say (immediately) whether the cavity is healing up or not. He’ll need to compare the scans with the last set to be able to give me that information. I expect that will come via my surgeon in a couple of weeks time. One thing that dealing with the medical profession teaches you; patience.

The MRI scan was much longer than normal. This was because they wanted a much more detailed image of the ureters and kidneys than previously, as well as the whole of my pelvis as before. In the end I was in the machine for about 45 minutes. I always used to think of myself as being quite claustrophobic, but actually once in the machine I found it quite relaxing. It’s a chance to turn off the outside world and actually think about some of the problems that I’m working on at the moment. I’m not sure I came to any successful conclusions, but at least it distracted me from the confined space I found myself in!

One thing of note, in addition to all the standard programmes that I’ve been through before, they also ran a special programme on the machine where it monitors your breathing, and then automatically and repeatedly scans you at the same point in your breathing cycle, eliminating the movement caused by your breathing. Very impressive stuff.

So now I just have to wait to see what the tests have shown, and what the surgeon and his team of experts think is the right next step.

Stent removal

On Friday morning I met up with my urologist at the local hospital. The stent in my left ureter was end-of-life, and was starting to cause me quite severe kidney pain. Normally it would be replaced, but in this case we’ve removed it, and will take the opportunity to see if the other treatments that I’ve been through in the last 6 months (designed to resolve all the infection in my pelvis) have also resolved the problems with my ureter.

Having been through this once before, I knew what I was in for; it’s not fun, as it’s carried out with only a light local anaesthetic, but it is straightforward, so I was back on my feet and home again by late lunchtime. I’ll feel a bit rough for the next couple of days, but should be back to normal by Monday or Tuesday.

Once my urological system settles down (2-3 weeks) we’ll run a series of non-invasive radiological tests on my kidneys that will reveal any signs of blockage or restriction in the ureter. This tends to show as enlargement of the associated kidney, but I expect they’ll also run some differential drainage tests too, to measure exactly how well its all working. More “gunk” to drink!

If all is OK then I will be able to put the whole stent thing behind me. If not then they’ll figure out what to do next – there are some fairly non-invasive options available that may help alleviate the problem.

But if there are problems it’s also likely to precipitate a conversation with my surgeon about the advantages of pro-actively undertaking the colostomy operation.

Speaking of whom, I have the first of my monthly consultations with my surgeon on Monday morning, where he will check if our plan to “just give me some time” for my abscess to heal is bearing any fruit. More news on that in due course I expect, though I’m not convinced it will be terribly positive.

It’s fairly clear that I’m entering the end-game now.

Six weeks on

As usual when doing anything under general anaesthetic, the hospital required that I eat nothing for the previous 6 hours, then only water until 2 hours prior to the scheduled start, then nothing at all. Which is OK if everything runs to plan. But of course, “The best laid schemes o’ mice an’ men, Gang aft a-gley”.

In this case, the patient prior to me on my surgeons list was having a seriously bad day. So by the time the surgical team had sorted them out, we started a lot later than expected. C’est la vie, these things happen, and if it were me on the table when things went wrong I’d not want the surgical team worrying about when they needed to start on the next guy.

But it did mean that by the time I got down to the operating theatre it was more like 5 hours since I’d last had anything to drink, and I was quite seriously dehydrated. Which meant the poor anaesthetist had no chance of cannulating me in the back of the hand, as the veins had all gone into hiding. He tried. And tried again. And then suggested using a vein in my neck (which I veto’d!) before finally finding a vein in my arm.

By this time, feeling somewhat like a pin-cushion, it was a pleasant relief to get some fentanol, before drifting gently off on a wave of propofol. And then on what felt like my next breath I was wide awake in the recovery suite. Mightily impressive. I can heartily recommend the members of the Portsmouth Anaesthetic Group – they do a particularly fine job!

The surgeon tells me that he managed to dilate the join in my colon without any issues at all, and that from now on I simply need to maintain this until such time as we reverse my ileostomy. Without going into unnecessary detail, this requires that I carry out a rather unusual (well, to me anyway) procedure once a week or so.

The other news however, is that he also carried out a flexible sigmoidoscopy to examine the abscess in more detail. The result of that is that the abscess is now very well defined, and draining freely, with plenty of granulation tissue. However, there is still no real sign of the healing moving on to the next phase inside the abscess itself. Which is very frustrating.

The surgeon feels that because the contraction of the joint is itself a healing response, and is happening so close to the abscess, we should certainly give things more time. And since I now have a lot of time and effort invested in this treatment, he would be inclined to give me as long as necessary for us to be convinced that there really is no healing going to happen before we take the decision to move me to the colostomy.

So, the current plan is for me to have monthly reviews with the surgeon, and in 3 months time to do another full imaging work up and then take a decision on what to do next. But realistically, unless we see some real progress soon, that decision is really just going to be setting the date for the colostomy operation.

So between now and then I really need to start preparing myself for a very major operation, just in case. The expectation is that that operation will take several months for me to recover from, so my view is that I need to get myself into the best possible health now so that I have the best surgical outcome possible, and recover as quickly and as well as possible. Assuming the worst case for making the decision, and the best case to schedule the operation, I would expect that to be some 5 months away. So being practical, and discounting Christmas, maybe February or March.

And if by some (increasingly small?) chance I don’t need the colostomy then at least I’ll be in great shape for spring and summer 2013!