Tuesday, 3 December 2013

December 2013 - hopes and fears

This post has been in draft for a while, whilst I wrestle with exactly what I wanted to say. As the title suggests, I wanted to revisit what my hopes and fears were, and still are, about my Pituitary Tumour and its subsequent removal.

The hopes are easy, I hoped that the tumour would all be removed and that I wouldn't die from the operation and I would both fully recover and feel better than ever I did before. Well 2 out of those 3 were achieved, and if you include 'recovering with the help of medication' then I'd go the full 3 out of 3 for hopes. The fears are a bit more complicated.

Of course there was the fear of dying from the operation and the fear of a general anesthetic which I'd never had before and fear of the tumour not getting removed. Well the anesthetic preparation certainly scared me to death, but of course once it kicks in you don't worry about it...then you come around. As far as I know, and I will be having another MRI scan soon to check, the tumour was completely removed. We'll see.

But the fears only really kick in once the operation is done and all the finer points become more obvious. That I could be on medication for the rest of my life, that other conditions could kick in as a result of the operation. I had a short lived fear I would bleed to death from the operation site, as I did have a big bleed after the operation. But once that passed, I didn't give it too much thought a few weeks after the operation. 

This next bit is what has stopped me publishing this blog post several times, when I read it back it makes me sound a bit bonkers. But on balance, I guess "a bit bonkers" is how DI made me feel....so I'll go with it and publish it and be brave. I'm not even sure the fear is that rational, although is fear ever rational?

My key fear from all of this is/has been Diabetes Insipidus....I was reminded of this recently when a Twitter post came up about it. I know I've mentioned DI a lot since I started this blog, but I think it remains one of my biggest fears right the way through and although right now I haven't got it, I do worry it might come back. I had it briefly during my first stay in hospital, and a quick DDAVP injection and it was gone. Simple so you'd think, but it returned.

After a bit of a battle because the DI was thought to be 'transient' (and I don't think the tests were conclusively showing me with DI), my Endocrinologist prescribed me Desmopressin tablets and again, stopped DI in its tracks. I am so grateful that these tablets got prescribed, as they stopped me and my wife going nuts, and helped us both get some sleep. It was one of those cases where clearly I had symptoms of something, but the experts weren't necessarily agreeing from the tests being done....so my Endocrinologist went with his gut feel rather than what his tests were showing (thanks Dr. Kar :-)  ). In a relatively short amount of time, I started to cut down the dose and then stopped them altogether after about 6 weeks and the incessant drinking and weeing had subsided. But I think it mentally scarred me a bit. I can't describe just how potent the thirst desire can be with DI (if you've had it, you'll know), just HOW MUCH you desire a drink and to just keep drinking. I had the weirdest fantasies about falling into barrel's of orange squash and drinking myself out....don't laugh at this point, I was deadly serious. Never has orange squash tasted so good as it did when DI was at its worst. If I allowed myself to lose control of the drinking urge, I'm not sure how much I could have drunk (and in case you're wondering I'm not even talking about alcohol!!). Also, ice cold drink was best....orange squash with several ice cubes in made the drinking even better, even more euphoric, not sure why. Obviously the weeing was damned inconvenient too, but it really alters your view of drinking from something quite natural you don't give much thought to, to something quite unnatural and arduous.

The thing I remember most was the advice from my Endo team, "go with what your thirst is telling you".....i.e. if you are thirsty drink. Perfect advice, and I still fall back on this advice now. Bear in mind my DI episode happened during one of the hottest spells we've had in ages, so we had 30 degree heat in the daytime, 20 plus degrees at night with me on Desmopressin and thirsty because I was genuinely thirsty. As a reminder, Desmopressin stops your kidneys producing urine, so if you drink too much you'll get water retention....

Even now, although I know I haven't got DI, I still get quite a thirst on at times. I recognise now that I do occasionally have an urge to drink sometimes that isn't a thirst....almost a compulsion. It is rare, but it is there, that is what I mean by mentally scarred. Late in the evening, I can suddenly get really thirsty and I do drink a small amount, I am rarely weeing during the night now so I know that my body isn't getting too much fluid or that I have DI. I also wake up quite thirsty too at times. But my brain gives DI far too much air-time, why can't it just let me get on with drinking and weeing without too much thought? I do control what's going on, but at times I just wish the thoughts would subside. I think time will sort me out in the end, once I can convince myself that DI has gone away for good, that my Pituitary Gland has done it's healing and why would DI come back now? But there it is, by far my biggest fear. And I'd never even heard of DI before I was prepped for the operation....it was one of the "this could happen when we operate" things that Sheila the Registrar talked about when she was getting me to sign my consent form for the operation. 2% the likelihood was I think, she certainly wasn't wrong!

Hopefully when I finally push the 'publish' button on this one, I can blow my DI fears out into the Internet, and out of my head :-)

To finish on a high note, needle phobia. I still have needle phobia, but it is SO much less than it was before all this started. You get accustomed to so many blood tests, that in the end dangling your arm out just doesn't seem such a stress. I did it recently for a Cholesterol test, so easy it's almost laughable how stressed I used to get. I would say a blood test is mainly transactional for me now, whereas it nigh-on made me pass out before. I would like to be able to watch my blood being taken, it is a goal I have. Maybe one day I'll pluck up the courage. I'll never love the needle, but perhaps I have learned to live with it.

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