Eat well, drink in moderation, and sleep sound, in these three good health abound

The last couple of weeks seem to have been manically busy, and as a result I’ve been commuting full-time to London, rather than my more usual 3 or 4 days a week. I’ve found that really difficult, and as the days passed I was struggling to keep going.

The main issue is just plain tiredness. My ileostomy has both herniated, and become very enlarged since it was installed. The result is a large bulge on my abdomen which makes sleeping difficult; I rarely get more than a few hours sleep a night.

So, discovering that I had meetings all-day on Thursday, all-day on Friday, and was entertaining customers on Thursday night too, didn’t fill me with my usual enthusiasm. I honestly didn’t think I’d make it through Friday. So to ease the load I booked an hotel in London on Thursday night.

And had the best nights sleep I can remember.

The reason, as far as I can tell, is that Marriott have invested in some spectacularly nice pillows. Their beds and duvets are pretty good too. But their pillows are something special. Wonderfully soft, but firm and supportive too. Mine are woefully poor in comparison.

Turns out that they even sell them. But in Europe they only sell smaller versions (I think to suit European queen-sized beds) of the pillow I made use of, even though at £54 + p&p, it’s a pretty full-on price. Unfortunately I have a king-size bed, so I really need one a little larger.

The interesting thing I took from this is the description of the pillow, which has two chambers, one central one, giving firm support, surrounded by a soft, fluffy outer layer giving comfort.

But this is the internet. Time to go hunting for someone who sells something similar, but in a size better suited to my bed. And here it is. Unfortunately it comes with what seems to me to be a terrifying £71.25 price tag. But then, if you believe the 10 year guarantee, that’s £7.13 a year, or a mere 2p per night.

So, what price a sound nights sleep?

Passing time

The Easter fortnight was my negotiated opportunity to take a last holiday away with my family before the onset of my next round of treatment. In the end, some of that time actually got spent doing chores at home that we’d been putting off for a while, but we also managed to get away to France, which was great.

Whenever I visit France I realise that the French have a much healthier approach to their work/life balance than we do. Of course, that doesn’t change the harsh realities of life – they’re all doing the same mad working weeks that we are – but in their case, they actively dislike it, and try to retain some of the traditions that we’ve long since cast aside. I quietly envy them that. And their wine. And their patisseries. And their weather!

And now I’m back to waiting for news of the date of my next operation, which should be sometime within the next few weeks, and trying to finish off some of those chores I mentioned earlier (mainly the complete redecoration of my study) while also trying to keep on top of work.

Life is never dull!

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.

Grumpy bar-steward

I’ve noticed that recently I’ve been less positive and a bit more grumpy when thinking and talking about my treatment.

It’s not really that anything has radically changed, but time is passing. The constant fighting with the ileostomy, the lack of sleep and consequent tiredness, the limits on what I can physically do while I’ve got the ileostomy. Trying to cope with the frustrations of the treatment not working as planned. Not being able to move on with my life plan in some of the ways that I would like to. It all adds up. And wears me down.

I noticed that on the 26th it will have been 3 years that I’ve been fighting this, and I’ve realised that actually I’m never really going to be able to completely stop, because even if we do finally solve my current problems, I’ll still never completely recover back to the level of wellness that most people take for granted.

Meanwhile, because I’m basically coping with being back at work and I’m getting pretty good at hiding the outward signs of my condition, there seems to be an expectation that I can do all the mad things that everyone else is expected to do again. Which actually, I can’t. Fortunately my immediate colleagues shield me from some of the worst excesses of the IBM system – but it’s frustrating that they have to.

For the first time I have found myself wondering if I should declare myself “disabled” to the IBM HR machine. I guess it all hinges on your definition of disabled. I’ve never considered myself to be disabled – there are people in much worse situations than me – but I’m starting to wonder if I need that label to maintain awareness. It feels like a very large step though, and one I’d really rather not take. Somehow it also feels like giving in.

And in other news, my appointment for the MAG3 Renogram is now through for Thursday morning. The fight goes on.

Not such good news

My consultant sent me an email at the beginning of last week, asking to see me for a general catch up and to discuss my progress to date. To sweeten the deal, he promised no colonoscopies. Which works for me.

Sadly the conversation wasn’t great. After the last intervention in May, I made good progress, with clear signs of healing of the wound tracks all the way through to August. But from August to November there was no further sign of healing in the wound tracks. On the positive side, at least the general inflammation in my pelvis continued to reduce steadily.

So the conversation centered around what we could do to try to get continued healing in the wound tracks, and possible issues and side effects associated with each of those options.

As always, the backstop to all this is to have a permanent colostomy. However, my consultant was very clear that this is not a simple option either. His comment was that it would be a bigger and more difficult operation to recover from than my original cancer operation. His estimate was several months off work to recover from it. So neither he nor I are keen on that option (for slightly different reasons!) until there is nothing else left.

So it’s really a matter of trying to find a way to restart the healing in the wound tracks. Long term antibiotics may help, but have their own problems. In particular, the kinds of antibiotics that would help will give me nerve damage if used long term – which of course, is exactly what we are thinking about. So the question is, where exactly is the trade-off? Of course I’d sacrifice temporary nerve damage for a successful result. What about permanent nerve damage? How much? What if I get the permanent nerve damage but no successful result? It’s a minefield.

Other options revolve around further surgery to open up the wound tracks more, trying to improve the long-term healing. That might work, especially in conjunction with more regular currettage and some antibiotics. Or it might not. My consultant just doesn’t know.

But unless we can find a way to move forward then my options are starting to look very limited indeed. Which is not good news.

But in the short term it’s time for my 3rd annual cancer check-up, so I’m due another full-body CT scan with the nasty IV contrast agent. And in the meantime my consultant will go off and consult with his colleagues and try to work out the best way forward for me.

Fun for all.