Displacement activities

Strangely, having realised that I’m now imminently facing more treatments, I retreated from all the obvious things that I ought to be doing, and vanished out into the freezing cold garage, and proceeded to disassemble my toy car. It’s been sat out in the garage with a broken speedometer for several months, barely touched, but this last set of news somehow galvanised me into action.

In the course of a few short hours I’d stripped out the entire interior, removed the transmission tunnel, and exposed the gear linkage and speedometer sensor, removed the broken sensor, adjusted the gear linkage détente, put it all back together again, fabricated a new sensor mount on the front bearing carrier, re-run the sensor wiring, and bonded some rare earth magnets to the disc rotor.

Unlike trying to monitor the propshaft rotation, monitoring the disc rotor works beautifully; the propshaft has a lot of play in it, as it connects the engine and gearbox which are both on flexible mounts, whereas the disk rotor doesn’t move in relation to the front bearing carrier at all. It’s possible to closely align the sensor to the magnets, and get a superb signal to drive the speedometer.

As a result, I can now (for the first time ever) see exactly what speed I’m travelling at in the car, and it’s somewhat eye-opening. I always knew the car was fast, but when the soft rev-limiter engages in 2nd gear, the car is already approaching 70mph. It’s completely mental. And exactly what I need at the moment!

The only question now is whether the epoxy resin I used to bond the magnets to the disc rotor is strong enough to keep everything in place, or if the magnets will eventually come loose. I’m currently pretty sure it’s the former – but as they say, pride comes before a fall!

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.