How am I?

We’ll find out on Tuesday afternoon, when I have an appointment with an MRI scanner.

Fundamentally the output from that will be used to inform the details of my surgeons next actions, but the general plan is for me to be booked in for surgery in early-mid May depending on operating theatre availability. The surgeons will then have another attempt to clear out all the infection in my pelvis, but this time by being far more surgically aggressive.

The high level expectation is a couple of weeks or so in hospital, followed by more time at home recovering. The main operation is likely to be radiotherapy guided, and take place in the NHS hospital in Portsmouth. The subsequent procedures that I’ll need will be easier arranged if I’m in the private Spire Portsmouth hospital, so it sounds like I’ll end up being moved. Given what I know of what is being proposed, I’m expecting the time in hospital to be moderately grim, so at least being able to spend most of that time in the comfort of the Spire will be helpful. I expect you can at least get toast for breakfast there, unlike in the QA!

Still, it will all be worth the effort if it produces the hoped for results. If not, then my choices are very limited indeed.

Stents, a fortnight on.

It would seem that I’m coping less well with this stent than I did with the last one. It’s been over a fortnight now, and I’m still seeing all the same issues that I originally did. As described in all the standard literature that the doctors point you at, drinking more fluids does help; it certainly reduces the obviousness of the blood in my urine. It seems to reduce the urgent need to wee. However, it doesn’t help with the pain in the kidney while weeing very much, if at all. And sadly, by drinking more, I do ultimately need to wee more. Just goes to show you can’t win them all I guess.

I’ve also had a couple of episodes where the stent appears to have moved position slightly in the kidney, irritating it, and causing lots of intense pain. A maximum dose of paracetamol barely touches that. Cocodamol on the other hand, does. But that leaves me in no fit state to do more than go back to bed, which isn’t ideal.

Consequently I’m hoping that these episodes are just down to the stent “bedding in”, and that I won’t experience them regularly, because they’re debilitating. The last one kept me awake all night, and wiped out most of the following day too. I can’t afford too much of that.

But ultimately, time will tell.

Speaking of which, I see my consultant tomorrow evening to discuss the next step in my treatment plan – namely how, when and where we next try to fix the inflammation in my pelvis. Which will be interesting.

Treatment update

My left kidney is failing. The results from the MAG3 renogram showed that it’s already down to only 50% effectiveness. Apparently there is nothing fundamentally wrong with the kidney itself; the problem is that the infection in my pelvis is causing inflammation in the tissues around the ureter, squeezing it closed, and reducing the flow of urine from the kidney to the bladder. The kidney adapts to this by doing less. Sadly this is usually irreversible.

From the surgeons perspective this is the wakeup call that indicates that we can no longer just give me more time to attempt to heal, but instead need to be more proactive in trying to fix the underlying disease in my pelvis. Although I don’t need both kidneys (in practice you can survive with only about 20% function in one) the desire is to preserve as much as possible, just in case something bad (such as a serious car crash, or the further spread of the inflammation in my pelvis) should happen to the good kidney in the future.

So, essentially the options open to me are a more serious intervention in my pelvis to try to fix the inflammation, and possibly preserve the join in my bowel, or a massive operation to attempt to remake the join (clearing out the existing disease at the same time), or a very large operation to create a permanent colostomy (again, also clearing the existing disease). Each has various advantages and disadvantages, but ultimately the only one with a pretty much guaranteed outcome is the permanent colostomy. Needless to say, that’s not the outcome I’m trying to achieve, so in the end I have elected to go for the more radical intervention to try to fix the inflammation and preserve the existing join in my bowel.

The operation to try to fix the inflammation will now happen sometime after Easter. That will involve more endoscopic surgery, a heavy regime of antibiotics, and the use of vacuum therapy to try to aid the healing of the wounds. It’s probably at least a couple of weeks in hospital, with several procedures under general anaesthetics, and then some further recuperation at home before I can think about getting back to work. The advantage of this is that I can still elect to do either of the other two options next, if this fails. The disadvantage is that in the worst case it adds up to 6 months more time to my battle, without actually guaranteeing me a final conclusion.

But in the meantime, the first step on this treatment path was to stent my kidney, which was done on Tuesday. This is my second stent, and as usual it was placed under general anaesthetic so I (fortunately) don’t remember much about that. However, I’m suffering from a clutch of the common side effects at the moment; feeling like I was kicked in the crotch by a horse, have a frequent need to wee, pain in the kidney when I do wee, and I’m also passing quite a bit of blood. Paracetamol is currently my best friend

Oh yes, and worst of all, I currently have a horrible cold too!

State of mind

It’s been a long time since I last posted anything here about my treatment. Actually, it’s been a long time since I posted almost anything here. And I’ve been pretty distant and difficult to contact in the real world too.

I could make a series of high-minded excuses, but actually the truth is much less prosaic; after the latest series of updates from my consultants I’ve been struggling to come to terms with my current situation, trying to work out what to do next, and how. And fundamentally I’ve not been coping too well; I’ve been acting rather like the archetypal “rabbit in the headlights”.

Tuesday will be the 3rd anniversary of my original cancer operation. I’ve been fighting medical problems for almost all of that time, as well as the 6 months prior to that while I was being diagnosed. And it’s fair to say that I’m tired. I’m tired of the hospital appointments, the consultations, and of being prodded and poked, injected, bled, and scanned. Of being outwardly positive and cheerful, even when I feel depressed and negative. And above it all, I’m heartily sick of still not being well again.

And I feel guilty for feeling like that, especially when actually I’m one of the lucky ones who seems to be surviving his brush with cancer, unlike so many others.

If this were a different problem I’d take a break and come back to the fight refreshed. But there is no break with this; at the moment it’s my new normal. So I have to just keep on going. But unfortunately this also seems to be an inflection point in my treatment; I need to make some irreversable decisions on the direction of that treatment, and they all seem to lead to fairly disagreeable end points. Which is not helping much.

So, to the friends and colleagues I’ve not been in touch with for a while, or been short and irritable with, I’m sorry. I’ll try to do a bit better. And since, according to Dorothy L. Sayers, a “trouble shared is trouble halved”, so I’ll even try to post a bit more here too.

Crossed wires

I got a letter from my urologist today. Apparently my kidneys are not as good as my consultant thought. My urologist is worried about the poor drainage from my left kidney, and in particular the affect of that on its long term health.

The divergence of the two positions is a bit worrying, but one has to assume the urologist knows best. So, not good.

He’s currently talking about reinstalling a stent immediately, and possibly trying to dilate the ureter in the longer term to try to improve the drainage. Of course, all this is dependant on the state of the disease in my pelvis that my consultant is still trying to resolve.

Frankly, I’m feeling rather depressed; I thought I’d cheated this, and I’ve just realised that I’ve not.

3rd anniversary annual test

I got an email from my consultant over the weekend. It seems like he uses his Sundays to catch up on his admin and email too. It’s vaguely comforting to see that irrespective of profession, none of us have enough hours in the normal working week to manage to keep on top of our email.

Anyway, according to my consultant my “CT is fine and kidneys fine too”, which is very good news indeed. At this point it’s 3 years since my diagnosis (34 months since my cancer operation) and the odds against me having a reoccurrence are improving all the time.

And although my left kidney was showing as dilated, it seems that that isn’t stopping the kidney from working normally (or close enough to normally that the doctors are happy to leave well alone). Which is more great news.

So now we just have to concentrate on finding a way to get the wound tracks in my pelvis to continue healing so I can (eventually) get my ileostomy reversed again, and hopefully put the last of this behind me.

Man Flu. Or worse?

One of the problems with being in my situation is that whenever I feel less than 100% well, I start worrying. The nasty little voice in the back of my head starts whispering “It’s back … It’s back …” over and over again. Any and all minor symptoms are a cause for close examination, concern and worry.

Of course, I get the odd cold, run a bit of a temperature, pull the odd muscle, get headaches, and have unexplained aches and pains just like anyone else of my age.

And I understand that – I’m not a hypochondriac. But my reaction to these things is not very logical. Frankly it’s anything but – which is difficult to explain to people. And then I saw this cartoon, which explains everything. Enjoy.

So far so good (part xix)

And the results from the MRI scan are in. Actually, they came in back on the 7th, but family birthdays, bonfire night, and the normal daily madness somehow got in the way of me reporting it.

Essentially the MRI showed that the infection that tracks out from the leak in my bowel is much better, but that my left kidney is still a bit dilated (indicating that it’s still not draining properly). However, the overall appearance of the tissues in my pelvis showed “considerable improvement”. Which I thought was both pretty positive and slightly worrying at the same time. I mean, I thought we’d sorted all that kidney stuff, right?

Apparently, not necessarily.

The next step from the surgeons perspective was to examine the join under anaesthetic to better assess the join and the healing. Apparently each mode of diagnostic (physical, X-ray, MRI, endoscope) provides different but complimentary information.

And so I was booked for an endoscopic examination under general anaesthetic; the appointment for that came through for the 15th. Except when I actually got there, there was some disagreement over whether or not I was meant to be having a general anaesthetic or not, and whether it was for a colonoscopy or a sigmoidoscopy. Which wasn’t very reassuring.

In the end it turned out to be a sigmoidoscopy, under a general, not just to examine the join, but also to perform curettage on the wound tract. This is where the granulation tissue that forms in the wound as part of the healing is removed by scraping. It sounds pretty grim (and I guess the need for the anaesthetic confirms that) but it apparently promotes better and faster healing.

They also ran some blood tests on me too, and they at least show that there are no issues with my kidney function – despite the dilation. However, it’s likely that some time with a urologist is lurking in my (fairly near) future too.

Faith

From xkcd, who understands from personal experience what it’s like:

So far so good (part xviii)

On Thursday of last week I had another follow-up examination by my surgeon. In the grand scheme of things, I seem to be doing pretty well, but he was keen to check on how the healing was progressing, and whether the inflammation was remaining in abeyance or not. At the same time he wanted to check to see if my kidney was continuing to function normally after the removal of my stent.

And so I was scheduled for an MRI scan. Which to my surprise was arranged for Monday of this week.

The scan was without any contrast dyes (so no need for a canular!) and involved three main components – a high resolution scan of the pelvis, and lower resolution scan of my kidneys, and (a new one!) some sort of scan of my diaphragm while I was breathing normally.

I never did find out what that last one was actually used for, but it’s the first time I’ve been in an MRI scanner and actually felt the entire motorised bed assembly jumping from side to side in the magnetic field – so they must have really cranked the power up for that one.

And now I wait to see what my surgeon and his radiographer think of the pictures. I should hear from them in the next week or so.