December 2013 - the new year beckons

To think, that this time last year, I was doing exactly the same as I am now....wondering "what will this next year hold". It is fair to say that whatever I predicted (I can't remember) it wouldn't have been what happened in reality. It is probably also true to say 2014 will be the same in terms of unpredictability, but I do hope for no more health scares to come.

My first test of that will be in February, when I have my first full Endocrine MOT checkup post Pituitary surgery. I have an MRI scan booked in for late January (an "MRI with *Gadolinium" to be precise) and I will need to get some blood tests done, and then I can go back to Dr. Kar to find out the status of my hormones and more importantly whether my Pituitary gland remains tumour-free. I really hope so, but if the news is different then I'll just have to cross that bridge when I come to it.

* Gadolinium is the stuff they injected me with when I had my first MRI scan. It is a 'contrast agent' they inject into the bloodstream so that they can get a good image of my Pituitary area

2014 generally isn't really shaping up to be a stunning year for us, both our Dad's are in their 80's and not in a brilliant state of health, I think that is where my main area of concern lies for this coming year. Even our old dog, at 14 years of age, cannot go on forever. So whilst I hope for good health for me, I fear for others in our family.

I was also thinking about a couple of other associated oddities that have happened as a result of having my tumour removed....if not 'as a result of', certainly 'around the same time as' and probably more the hormone treatment than the tumour itself. My hair has really gone downhill, it is much more greasy and unruly than it was, as well as thinning at an alarming rate. Also my fingernails have nearly recovered, but I had a 'growth line' appear in every single one of them, around the time of my operation. There was a line across all the nails where clearly something biological changed in my body that affected my nails. My left thumbnail fared the worse, in that little shards kept snapping off, but the defects have just about grown out now. And spots! I keep getting spots on my face, turned into a spotty teenager I have.....

Lastly, the other thing I could NEVER have imagined me doing in 2013, or any other year for that matter, was writing a blog. I've really quite enjoyed doing it and will continue to do so for as long as I'm enjoying it and have something useful to say. I hope you the reader finds it a bit interesting every now and then - I guess if it helps just one person with a Pituitary issue understand a bit more about the process, then I've succeeded. 

I wish you all a healthy, happy and prosperous new year.

Cheers, Carlton.

December 2013 - Pituitary Poetry!

Ok, so as you are about to find out, I'm no poet. But as it is Christmas time I thought "why not" let's have some fun. So with no regard whatsoever for any poetry rules, here goes:

2013, it was a heck of a year
It started well, but wasn't full of good cheer
I had something wrong inside my head
Not the first time that it had been said!

I had something wrong with my pituitary gland
So off I went to have my little head scanned
There was something in my head that shouldn't have been
Put me and my wife in a terrible spin

It wasn't long before the hospital rang
And promised to pull out the whole shebang
The tumour would come out, down through my nose
And out in the bin with it, they would dispose

The operation day soon came along
Doctors and nurses around me, all of a throng
Out like a light, into a deep sleep
Woke up later, machines going beep beep

So my hospital stay soon came and went
Some recuperation time was soon being spent
But as with these things, it not so clear cut
Coming up soon, was a very large “but”

Back to the hospital, I had to go
Recovery time, annoyingly slow
A time to be healthy, I so did yearn
and with lots of time my fitness returned

There are some people I really must thank
Without whom I’d be nowhere to be perfectly frank
All the NHS teams who looked after me
Couldn't have done it better, I’m sure you’d agree

Another constant who helped me recover my life
Is my beautiful and gorgeous and long suffering wife
She was as caring as any person could be
In her valiant quest to look after me 

So what’s the moral of this story, I hear you cry
Well there isn't one actually, I really can't lie
Just a lame excuse to write some poetry in my blog
It’s Christmas-time everyone, let’s have some eggnog!

------------

Maybe I'll update the blog over the festive period, or maybe not. But in any case hope you all have a Merry Christmas everyone :-) 

December 2013 - checked out my nerves!

Well today was the 'nerve conduction study' test at the QA Hospital in Portsmouth. The short answer to the results is "there's nothing to worry about" - which is exactly the answer I wanted.

The doctor asked me some questions about my history and how I came to have the numb/tingly leg and foot and then wired me up to the EMG (Electromyography) machine. He then put the 'sensor' in various places in my lower leg and foot and put a small electrical current through me, which was an odd but not unpleasant sensation. Particularly as my toe's involuntarily curled as the current went on and off. The test showed that I don't have a Neuropathy which is excellent, and what I have done is probably pinched a nerve and slightly damaged it. A lovely quote of "I should consider myself normal" made me chuckle, but essentially what this means is I just live my life, if something specific annoys the condition then just avoid it. I am to monitor the situation and if it gets any worse then go back to my GP, it could well get better eventually. The actual outcome is that I still don't know exactly what is causing it, but it is likely to be in my lower back somewhere, but as an MRI scan has been done and shown no damage, then I can stop worrying.

Because this was another 'neuro' department of the hospital (Neurophysiology) the doctor took quite an interest in, and was very knowledgeable about, my Pituitary condition. He seemed impressed at my outcome and knew my Endocrinologist and surgeon, we talked through all the separate symptoms I have had over the years that I didn't put together to more clearly show I had the early signs of the Pituitary tumour. Quite interesting to talk it through like that, and show how useful 20/20 hindsight really is. He was surprised that my failed eye field tests 4 or 5 years ago didn't result in a diagnosis. But as I said in my blog before, I went and did loads of field tests and had extensive examinations of my eyes but nothing was found....I presume because my eyes always were healthy, but the cause was my optic nerve not the eye. 

It reminded me of a list of symptoms I looked through a while ago, and realised I have had most of them. So here they are reproduced from the Pituitary Foundation website, here are a list of symptoms of Hypopituitarism:

	Did I have these symptoms?	Have I got the symptoms now?
Excessive tiredness and decreased energy	Yes	No
Muscle weakness	Yes	Not so much (working on it)
Reduced body hair	Yes	Not so much!
Weight gain	No	No
Increased sensitivity to cold	Yes	No
Constipation	No	No
Dry skin	Yes	Still a bit
Pale appearance	Yes	No (rosy cheeked in fact)
Low blood pressure and dizziness on standing (postural hypotension)	Yes	No
Headaches	No	No
Vision disturbance	Yes	No
Diabetes Insipidus	Yes (after the operation)	No (thank goodness!)

So there you go, it just shows how typical a Pituitary patient I was, I just didn't know it!

December 2013 - a bit of rambling

Verbal rambling that is, not physical rambling! Not much to say this week, which is usually a good sign.

Those of you who use Google Now on your Smartphone will realise that it helpfully pops up every now and then and asks you whether "you care about journey times to a new place". I sometimes say yes to this request, as it is usually somewhere you visit a lot, like a friends house, or a parents house. However, it just goes to show how sad your life is when the place it is asking about is "Queen Alexandra Hospital, Portsmouth". Clearly I have been there so much lately (visiting my Dad mostly) that Google Now has seen fit to help me look at journey times to this favorite place. I appreciate it when technology is being helpful, but I can't quite forgive it on this occasion - but I did say 'yes'.

I have an appointment to go for nerve conductive tests next week, which will hopefully pinpoint where the issue is that is causing my leg and foot to be a tingly and numb. After that I guess I get to find out what is to be done about it, if anything. I'm hoping it falls in the "it's nothing to worry about and it will disappear all by itself in due course" category.

I also decided that as my vision has returned to normal now I haven't got a tumour pressing on my optic nerve, it was about time I got my eyes retested and have picked up a new set of spec's. Very smart they are too. As with all new spec's the world all feels a bit 'super HD' and a bit bubble like, but I'll get used to them. The contrast would be if I still had the tumour, I might have tunnel vision by now.....

So that's it for this week, I'll leave you with this one-liner that I saw recently from the great Billy Connolly

"My definition of an intellectual is someone who can listen to the William Tell Overture without thinking of the Lone Ranger"

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.