Friday, August 05, 2011

there and back again

Ah, Pancreatitis. It appeared in our lives like a bloke we can't quite place but who seems to know us rather well, who shows up at our door out of the blue. He ends up sleeping on the couch, managing to make it seem, somehow, as if we've no real choice in the matter. We think it'll just be a day or two, but he ends up staying a week. He's pretty annoying, in the way of flakey perpetual couchsurfers, but he mainly perpetuates run-of-the-mill irritations - drinks all the milk and puts the empty carton back in the fridge, cracks a couple of CD boxes, has a taste solely for our pricey beers and foody treats saved for a special occasion, uses one of our towels but can't remember which one, demolishes 'just a couple of slices' out of the cake prepared for a friend's birthday. That kind of thing. Some more spectacular incidents, like vomiting down the side of the loo and 'forgetting' to clear it up, and an infamous attempt to take a piss in the corner of the kitchen. More than once he invites a couple of mates over who defeat our strenuous efforts to turf them out and keep us up all night with terrible, not even as good as the-kids-today music. After a few failed interventions over an interminable six days, Pancreatitis finally sidles to the exit, and we breathe a sigh of relief.

A few days pass, enough to start thinking that the week of Pancreatitis was just an unsettling but now safely concluded annoyance. Then we walk in and find him sprawled on the couch. Again. We don't know how he got in or why he's come back, but it's certainly depressing to see him sitting there when we thought he was gone. And this time he's meaner.

He's aggressive, he's not leaving and he's a lot more frightening. We immediately enlist some professional help to get rid of him but no dice, he seems to have a key to our gaff and he's treating the place like he owns it. He never seems to go out, and he takes over more and more of the living room and then the bedroom, spreading his rubbish around while breaking or 'mislaying' our stuff. He completely destroys a couple of projects we were working on. We call in more professionals but all they seem able to do is placate him while he becomes scarier almost daily. He is now living in our flat with us while we try, and fail, to continue normal life around him.

Pancreatitis starts to turn violent and unpredictable. He threatens us more than once and we can easily imagine it reaching a point where we'll be in fear of our lives. It seems that no-one can do anything to make him leave, and we now have to share our flat with him, our own lives shrinking to a daily grind of dealing with his unpredictable outbursts while desperately trying to get him to go. We get as much information as possible about who he is and what can be done to evict him, but nobody seems to know much – this surreal situation seems to be a poorly understood grey area, and no-one knows why he's here or what might make him leave. We try everything we can. Apparently there are hundreds of other people in a similar situation playing host to an unwanted, scary 'flatmate', but no-one provides any better suggestions that might get him gone.

Some days seem interminable, others pass in a rapid blur. In more reflective moments we feel grateful for what the experience is teaching about acceptance, small joys and the important things in life, but mostly we use all our energy to cope.

After six weeks when things are either bad or getting worse, the situation starts to improve. The noxious tenant is still there, but he's less invasive, he plays his 'music' fairly low and dumps his stuff around the place only once or twice a day, and we're able to start reassembling a semblance of ordinary life around him. A few more weeks, a couple more incidents, he's obviously not going to leave any time soon but we're starting to think he will go eventually.

Then the professional eviction agent who has been helping us from the start says that actually, things are worse than ever – while more innocuous on the surface, this living-room horrorshow has been secretly poisoning us, stealing our stuff from under our noses, and plotting to remain in situ for years. The only option is a wholesale attack, undertaken with surgical precision. The eviction specialist and dozens of others sweep into action, and it's all over in a matter of hours. Pancreatitis is gone.

Two weeks of mopping up later, and we can slowly start to get our space back. The specialist tells us it's almost certain Pancreatitis won't return. We're shell-shocked and worn out after dealing with this invader for the last three months, but we begin to believe we've really gotten rid of him, and that we can start to rebuild our lives. A month or so passes fairly quietly.

Then we start to notice a couple of things out of place – things that don't belong to us appearing in our flat; some food gone from the fridge; unexplained stains. We can't believe that he could be back; our resistance is so deep that we outdo each other concocting alternative outlandish explanations. The eviction expert comes by, a scheduled visit to make sure all is well six weeks on. He's concerned at what he sees. And surprised. We try to think it can't be what it seems it must be. But it is. A day later, Pancreatitis is back.

He's not as aggressive this time, almost nonchalant – a few days of hell-raising and then he backs off. But now, apparently, he's moved in for good. He might not cause much trouble in the future, or then again he might. Probably he'll go away occasionally, maybe for months or years at a time. This 'visit' could be as bad as when he moved in first, or it could be very different. Maybe he's changed. Eventually we'll learn what he's like, how to manage him, how to live with him. We'll have to and we will. He's there now, on our couch, occupying our gaff, part of our lives. This time there'll be no getting rid of him. We'll live with Pancreatitis, and no matter how awful he is, we'll live well.

***

So much for the analogy. This is the reality. About two weeks ago, The Unfortunately Loyal Boyfriend wasn't feeling that great. He had been doing well, if tired and quite weak as he continued recovery from major surgery, but then he had about a week of hit-and-miss not feeling good followed by a couple of days of pain. On what would have been the third day of pain he had a scheduled check-up with his surgeon, which had been in the calendar for six weeks after the operation. That was the operation that was supposed to take care of the pancreatitis and its attendant complications, the operation after which there was (and I quote) "close to zero" chance of the pancreatitis recurring.

At the check-up, the surgeon was concerned. He said that a new pseudocyst (a sac of fluid near the pancreas) might have formed, though he also said that he'd never seen that happen. He wanted The Unfortunately Loyal Boyfriend to have tests, especially a CT scan, and thought it would be easier to do the tests as an inpatient. At the time this sounded plausible, if depressing because we'd hoped the hospital stays were behind us; later I thought that the surgeon was likely even more concerned than he was letting on and that in fact he was going the admitting-to-hospital route because of his suspicions.

So, last week The Unfortunately Loyal Boyfriend was admitted to hospital. Again. Where a day later the CT scan results came back and the doctor told him he had pancreatitis. Again. And after three days he was discharged from hospital, no longer in pain, with no cause found, to go home and hope for the best. Again.

That's the situation. The pancreatitis has recurred, a totally new bout, in a different part of the pancreas, the head this time. This bout has so far been very mild, probably milder than the initial week or so back in March. It is unusual for this to happen, and it has happened quickly, less than two months after the operation and less than five since the first bout began. It might just go away, or it might not. Whether this bout subsides quickly or not, it is now very likely that the pancreatitis will recur throughout his life. We won't know what that really means until much more time has passed. If it comes back once every few years, causes a few days of pain and requires some days in hospital followed by a couple of weeks having to take it a bit easier, that's one (not brilliant/not terrible) thing. If it comes back every few months and requires weeks in hospital and months of recovery, that is quite another thing. We have to wait and see.

The care he's received has been excellent so far, and probably the best in the country. Yes, we'll pursue all the avenues - thorough medical after-care, possible diet restructuring, getting second opinions, complementary therapies, medication possibilities – of course, we'll look at everything. But pancreatitis, especially the 20% of cases for which no cause is ever found, unfortunately is not well understood by medicine or any other science. And the treatment and management recommendations remain the same no matter what, and we've already done mnay of them. For now we'll cope and we'll hope. He has been out of hospital for a week. He's hurting a little today; maybe we'll be back at the hospital tomorrow; maybe not. But whatever happens we'll live with it. And live well.


The story so far:
Anatomical adventures
Home is where the pancreas is
Mr Whipple to the rescue

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2 Comments:

Anonymous Niall said...

:-((((((((((

Monday 8 August 2011 at 12:49:00 GMT+1  
Blogger lusciousblopster said...

but we're still :-) no matter what

Sunday 14 August 2011 at 11:49:00 GMT+1  

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