New blog at Mermaid & Ink!

Hi y'all! it's been a crazy long time since I last wrote on this blog. I've not given up on blogging completely though - I've recently started writing again, only this time I'm not just exclusively focusing on my health issues. You can find my new blog at www.mermaidandink.com, where I write about my work as a professional mermaid and performer, art, baking... and, of course, the magical world of pituitary tumours and weird medical oddities. I would love to see you there!

An Update: Surgery Next Tuesday

Preparations are coming on apace for my pituitary surgery on (drumroll...) the 15th January! (That's next Tuesday, for those who are hard of thinking.) Compared to last time, I feel a lot more relaxed about the whole thing. Partially it's because it's not an unknown quantity; I've had the operation before (albeit with a slightly different surgical approach, as this time it will be endoscopic transsphenoidal surgery) and I know much more what to expect. I think the timing is pretty good too; as it's so soon after Christmas, I didn't really think about it much over the holidays and now it's practically already here!

There's always the faint worry that they might cancel it at the last minute again, which would be really annoying, but there's not a lot I can do about that. I've been doing lots of fun things in preparation for being an invalid for six weeks; yesterday my boyfriend and I went on a really nice walk in the countryside nearby, and next Sunday I've planned an afternoon tea party at my house (guest numbers are slightly restricted by the number of chairs we own) which should be fun. I did contemplate making it a neurosurgery-themed afternoon tea party, and trying to ice cupcakes with brain shapes, but sadly I suspect some of the guests might find that slightly offputting.

 I'm off to spend a day in hospital on Wednesday for all my pre-surgical check ups with endocrinology and neurosurgery. Mainly they centre around repeatedly asking questions about what medication you're on, symptoms, do you understand the risks of the surgery, etc. I think I'll also have an appointment with opthalmology - and I'll be surprised if they don't take any blood tests because it's practically a hobby now.

Have a very healthy Christmas!

Happy Christmas everyone! Thanks for reading my blog over the past year. No doubt there'll be much more to tell in the new year. I hope your holidays are both happy and healthy! xxx

How Not To Get A Date

So there's quite a lot of catching-up to do, given that I have been a bad pituitary blogger for the past month and a half and yet quite a few highly relevant things have happened, including meeting with the neurosurgeon and Ear Nose and Throat people (who are apparently more properly called Otolaryngologists - who knew?) and finally getting a date for surgery. I shall start at the very beginning...

At the beginning of November, my next injection was due. You probably know by now that I need monthly injections of lanreotide, a somatostatin analogue, to suppress the overproduction of thyroid stimulating hormone by my pituitary tumour. These injections are delivered into my hip via the medium of a really big needle. It's so big I'm pretty sure a camel actually could pass through it.*

One of the nurses greeted me when I arrived, took my bloods and then went to get the injection. Then something happened which had never happened before.

"Would you like any freezing spray?" she asked me.

I was nonplussed. Previously, I had always associated freezing spray with childhood trips to the Irish seaside, not hospitals. I had to ask what it was.

"Oh, it's just a spray which freezes the skin before an injection," the nurse explained.

Those who know me well will know that one of the few things I like less than injections is being cold. "Sounds unpleasant," I said.

"Yes, it's quite painful," the nurse said breezily. "But some patients still prefer it."

Now at this point, I admit perhaps I should have smelled a rat. No other nurse had ever offered me freezing spray prior to one of these injections. But I wasn't worried.

Like a fool.

Most nurses, when they do this injection, hold the needle (did I mention it's massive?) against your skin and then gently press it in. Not this nurse. Instead, she opted to hold the needle some distance away from the injection site, then take a great swing and stab me with it. It was considerably more painful than usual, and I bled a lot more than normal as well.

I can see why her patients usually ask for freeze spray.

So, I promptly became the proud owner of an excitingly multi-coloured hip bruise, which lasted for three weeks before finally fading just before I was due the next injection. I actually did try to take a photo to show you all but it just came out as a blurry smoosh. For a couple of days I couldn't even lie in bed on that side without wincing.

Anyway, that anecdote was by way of being an aperitif to the main cock-up that I encountered on that trip to the hospital. While my hip was bleeding gently, one of the endocrine nurses asked if I'd heard
anything from the Neurosurgery or Ear Nose & Throat departments, who were supposed to be getting in touch with me about my impending surgery. I explained that I'd still heard nothing and that despite my attempts to call them I'd never got through to speak to an actual human being, and they'd never returned any of my messages. The nurse went off, had a look at her computer, and returned to tell me that I'd had an appointment with ENT. On the 26th October. Which was four days previously.

I also had an appointment booked in on the 5th November with Neurosurgery which I knew nothing about, and ENT had written to me to rearrange my missed appointment for the 6th November.

They'd been writing to my old address.

I still don't have the faintest idea how it happened. As soon as I moved house, I duly phoned the hospital and updated them with my new address. Not long afterwards, I received an appointment from the MRI Department at my new house. I sighed a deep sigh of relief in the happy knowledge
that my details had been successfully updated... and it never occurred to me that they might be sending appointments to my old address.

Obviously I am also slightly put out at my former housemates, who knew I was going to have surgery and who I'd asked to forward on any hospital-looking letters, or even just let me know if they arrived so that I could drop by to pick them up. But how the hospital could get it right... and then revert to getting it wrong, I have no idea. It's not the first time it's happened, either - avid readers will recall that information about a ream of tests I had to have in July was sent to my old address despite the fact that I'd not lived there in four months and all my other letters had gone through correctly.

So obviously, I was very upset about this. I had been doing everything I could to find out
about my appointments, and no-one ever got back to me. You have to wonder how many appointments I would have had to miss before anyone bothered to do so.

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* Hell yeah, I'm cultured.

Pituitary Awareness Quiz: The Results

I was so impressed by how many of you took part in my little quiz - apologies for the long delay in coming out and praising you for it! Some people dipped in and out for the odd question, while others were with us for the long haul.

Bearing in mind that double points were awarded for witty answers rather than merely correct ones, I present... The Results!

THE RESULTS

The winner is... Clare! With the close runner-up Davey D. Congratulations guys, you may officially brag wildly about your knowledge of the pituitary gland and its inhabitants.

And as I did promise a praise poem for the winner:


There was a young lady named Clare
As wise (and fierce) as an owlbear.
She was a quiz queen
 - quite the answer machine -
she made other contestants despair!

Pituitary Awareness Quiz: The Answers

Hola! Well, I'm just back from a spot of festive carol singing at the local pub with my whole family in tow, and I thought: what better time to finally put up the answers to October's National Pituitary Month quiz?

THE ANSWERS:

Q.1: Acromegaly is a rare disease caused by a growth-hormone-secreting pituitary tumour, which can lead to gigantism and excessive growth of the body's tissues. But what language is the word "acromegaly" derived from, and what does it literally mean?

Correct answer: c) from the Greek akros "highest; extremity" and megalos "large".

***

Q.2: Approximately how many (normal-sized) human pituitary glands could you fit in an Olympic-sized swimming pool?

Correct answer: Wildly debateable! Although I did have a correct answer, calculated by my lovely boyfriend on the basis of the human pituitary gland being roughly the size of a pea and assuming that the glands on the bottom retained their shape instead of being pulverized by the weight of the ones on top, I decided to award a point to anyone who showed their working; because it's the effort that counts!

***

Q.3: Which of these is an alternative name for the pituitary stalk?

Correct answer: c) The infundibular stem

***

Q.4: The human pituitary gland will vary in size over a person's life. What physiological event (other than untoward tumourousness) causes the pituitary gland to reach its largest natural size... and why?

Correct answer: Pregnancy, although the gland tends to be at its largest shortly after giving birth. This is due to lactotroph hyperplasia; basically that means an increase in the number of cells which secrete the hormone prolactin, which stimulates milk production for breastfeeding.

***

Q.5: Beta-endorphin is used by the body to numb pain, and is found in the anterior pituitary gland, as well as the hypothalamus. From the extracts of which species' pituitary gland was beta-endorphin first discovered?

Correct answer: d) Camel (apparently!)

***

 

Q.6: Only one of the following pituitary-related conditions was first identified by a woman named Cindy. But which one was it?

Correct answer: a) Sheehan Syndrome

***

Q.7: A five point bonus was awarded for writing a poem about the pituitary: there are no wrong answers!

***

Q.8: I'm currently receiving monthly lanreotide injections. These are somatostatin analogues - hormone injections - which counteract the effect of my pituitary adenoma producing too much thyroid hormone. Assuming this is the only medication I'm taking, and assuming I live in England... am I allowed to donate blood?

Correct answer: a) Yes

***

Q.9: Which of the below is the correct spelling of the full name of the pituitary hormone ACTH? (no cheating!)

Correct answer: d) adrenocorticotropic hormone
***

Q.10: What hormone does my pituitary tumour overproduce?

Correct answer: a) Thyroid stimulating hormone

***

Q.11: Who is this man, and what does he have to do with the pituitary gland?

Correct answer: Harvey Cushing, pioneering neurosurgeon and the man who discovered Cushing's Syndrome.

***

So now you know!

The results will be out tomorrow...

Back to the Blog!

It has been a horrendously long time since I wrote on here! So much has happened in the intervening month-and-a-bit, so I apologise. I'm afraid my November-based absence is down to a vague attempt to complete National Novel Writing Month, combined with a set of professional exams at the end of November. As it happens, I failed to complete my 50,000 word novel and I think probably managed to fail an exam as well, so my abandonment was entirely pointless; I might as well have just kept blogging! Additionally I am not assisted by changed to blogger which mean that it no longer works at all with faintly elderly versions of Internet Explorer, which means that I can no longer post updates during my lunch hour at work.

Anyway, many and greater updates must wait for another day, alas - however, I can share the exciting news that I am currently scheduled to have another bout of transsphenoidal pituitary surgery on the 15th January.

Yes, that is only just over a month away! But more on that some other time...

Pituitary Awareness Quiz: Day 2

Welcome to today's question about the pituitary gland! Yesterday's question was relatively easy to Google, so I thought I'd throw in a slightly more tricky one for you (and my boyfriend did the calculations!).

National Awareness Month Pituitary Awareness Quiz

Day 2 - Question 2

Q.2: Approximately how many (normal-sized) human pituitary glands could you fit in an Olympic-sized swimming pool?

a) 4 billion

b) 20 billion

c) 50 billion

d) 100 million

e) 100 billion

Anyone who provides workings to back up their answer will receive great respect. Good luck!

Nationary Pituitary Awareness Month Pituitary Awareness Quiz

Even the most ardent readers of my blog will probably have forgotten that October is National Pituitary Awareness Month. Oh yes, ladies and gentlemen - that happy time is here again! Try to contain your excitement, please.

Last year, I looked at some of the other National Months that are held in October; this year, I felt like doing something different. But pituitary glands are tricky things to raise awareness for, especially considering that approximately eighty percent of Britons can't even spell the word "pituitary", let alone point to its location in the body.*

And then it hit me.

Fortunately, I wasn't seriously injured.

Dear readers, it's been over a year since I started this blog. Some of you have been here from the start, some of you have joined me along the way, and some of you typed "piglets in a teacup" into Google and arewondering how the hell you ended up here.** Believe me, I'm wondering too. But I feel quite strongly that all of you should have increased, improved and frankly incredible knowledge of the pituitary gland as a result of reading this blog, and now you will finally have the chance to prove it. And so, I present: The National Pituitary Awareness Month Pituitary Awareness Quiz! It's not sanctioned by any healthcare professionals, and it's not recognised as a professional medical qualification anywhere, ever - but the winner will gain both bragging points, a delightful poem about how wise they are, and my eternal respect.

Here's how it's going to work: For the remainder of the month, I will post one (probably multiple-choice) question about the pituitary gland every day.*** To be in with a chance of winning, simply post your answer in the comments section. Correct answers gain you one point. At the end of the month, I will leave a day or so for anyone who wants to join in to answer all the questions, then I'll tot up the points and announce the winner and write a short praise poem about how awesome they are.

Here's the twist: correct answers gain one point. Answers (however wildly incorrect) which include something that amuses me - a pun, rhyming couplet, accompanying picture or just shameless flattery - will get two points. Because life's not fair, and neither is my pituitary gland.

If I get more than five comments before the end of the month, I will count this quiz as a wild success, so please join in!

National Pituitary Awareness Month Pituitary Awareness Quiz

Day 1 - Question 1

Q.1:  Acromegaly is a rare disease caused by a growth-hormone-secreting pituitary tumour, which can lead to gigantism and excessive growth of the body's tissues. But what language is the word "acromegaly" derived from, and what does it literally mean?

Is it:

a) from the Latin acro "extremity; member of the body" and magnus "large"

b) from the Greek arka "repository; hidden place" and megaras "growth".

c) from the Greek akros "highest; extremity" and megalos "large".

It's an easy-to-Google one to start you off. Fly, my pretties, fly!


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* Warning: spurious fact alert.

** This is actually a genuine search that somehow resulted in my blog
coming up. I have no idea why

***In theory.

Return of the Living Head

And I'm back! Apologies for another long delay. I have not forsaken you, dear reader. As you may remember, I started a new job in September and am somewhat busier than in my previous job - consequently, while I used to spend my lunchtimes peacefully penning delightful (and lengthy) blogposts, I now spend them staring blankly at stories about singing mice on BBC News and resting my poor beleaguered brain. I also moved house around the same time, and so instead of spending my evenings huddled at my desk typing furiously, I now spend them watching Heroes (curse you, housemates!).*

At my workplace this morning, however, I spent twenty minutes looking for a room that didn't exist. I didn't find it, but the experience has left me feeling the need to express myself. And that, dear reader, is where you come in.

However, as it's been so long I thought maybe instead of boring you all with a massive post catching up on everything that's happened, I would provide a quick summary on my progress with my various medical issues. So here goes:

Getting lanreotide injection: 100% complete
Getting funding for future injections: Data insufficient
Getting surgery date: 0% complete
Getting appointment with surgeon: 0% complete
Getting appointment with ENT re. sinusitis: 0% complete
Getting pissed off with all the delays: 100% complete
Writing a letter to the hospital to complain about it: 0% complete
Being cured: 0% complete

As you can see, great progress has not been made, although I have at least had a lanreotide injection now. It was a month late because things kept managing to go wrong at the hospital's end, which is frustrating enough, but worse is the fact that no-one ever bothered to update me on what was happening, which meant that I had to keep calling to try to find out what was going on.

Anyway, more on that another time, this is meant to be my super-quick return of the jedi from the deadi post. Adieu!


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* I should point out that I don't just watch Heroes at home. Since moving in, I have also gone stiltwalking, learned how to spin a plate on a stick, covered my own leg in henna tattoos and made the world's worst lemon drizzle cake. But Heroes has featured quite heavily.

One Year Later

It's been precisely one year since I started this blog! Here is a link to my first ever post. Ah, fond memories.

It's actually a bit of a fluke for me to be posting this, I knew I started writing about a year ago and have been meaning to check the precise date for weeks and haven't got around to it... until today. Which happens to be the one-year anniversary of the day I started boring the internet to tears with an excess of information about my pituitary tumour. And other people's pituitary tumours. And the history of pituitary tumours.

Not entirely sure how this anniversary should be celebrated, although obviously getting wasted is always a classic option. One year ago I was still getting over surgery; now I'm waiting for another surgery.* In September 2010, this blog got a grand total of 157 views; so far this month I've had just under 1,000 and we're not even halfway.

Ok, that's getting dull fast. I'll just say happy blogoversary, thanks for reading, and please force your friends to do the same. Or, if you've just started reading and you don't like what you see, your enemies.

Ciao!

Have a picture of a monopod from the 1473 Nuremberg Chronicle. Because why not?

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*And, indeed, for the NHS to get its fat ass in gear and give me the medication I need.

The Sound of Striped Hooves

Around a year or so ago, an interesting thing happened to me. I was in the car with my mother, we were driving down the motorway, and there was a car pulling a horsebox in front of us. We were going rather faster than the horsebox, and as we passed it, I looked inside and saw… a zebra. It was only a glimpse and it confused the hell out of me for a moment, but I am still sure it was a zebra, not a horse, inside that horsebox.* At first I was slightly worried I might be going mad, but my mother pointed out that there are plenty of zoos and animal parks around the place and presumably they must transport their zebras somehow.

Folk of a medical persuasion will probably see where I am going with this, but I promise it is an entirely true story, the proof of which is that it took months and months for it to occur to me that I could use it on this blog. What can I say? I am slow.

Healthy people are probably wondering why I am blathering about hoofed african mammals instead of my usual cheery chat about tumours, but fret not. All shall be revealed.

A zebra is, as Wikipedia (and, I believe, Scrubs) so nobly tells us, the medical term for a surprising diagnosis, which rather begs the question of what we should call those stripey ponies running around in nature documentaries. It comes from the aphorism that when you hear hoofbeats behind you, you don't expect to see a zebra. This is a wise observation which is totally inapplicable to anyone who lives in the African plains, but as it was coined by an American doctor in the 1940s, this oversight may perhaps be forgiven. The point is that when a doctor is presented with a set of symptoms which may be caused by a common illness or an uncommon one, the logical assumption should be that the patient most likely has the more common illness - even though there may be a temptation to go with the more dramatic diagnosis.

I have noticed this idea of being a medical zebra popping up in a few blogs by other people with rare pituitary tumours, particularly in those with Cushing's disease - possibly this is related to the fact that one of the symptoms of Cushing's is the development of dramatic stretchmarks of a stripey and thus zebra-like nature. A few further examples - here, here and here.

A group of Cushing's sufferers at a recent conference.

I guess I count as a medical zebra myself; my symptoms of hyperthyroidism such as tachycardia, hair loss and frenzied blogging** would normally be considered as indicating Graves disease or something - and even when the more common thyroid malfunctions were ruled out, it was considered more likely that I had a condition called Resistance to Thyroid Hormone than thyrotropinoma. But no, my body had picked the most unusual way it could think of to break down, and I was neither a horse, nor a pony, deer, mule, donkey, nor any one of a number of hoofed creatures which are more common in the UK than zebras.

Neighbours of Lord Rothschild may not only have expected to see zebras when they heard the sound of hoofbeats, but also had to leap out of their way.

Medical zebras are a tricky subject, on the whole, and there's obviously a balance to be struck. While it can be frustrating for those of us with unusual conditions to think that we waited a long time for a diagnosis, it would be far worse if doctors went around ignoring common diagnoses in favour of the weird ones. Equally though, doctors should be aware that just because something's weird and unusual doesn't mean it's not sitting in front of you - as anyone who's come face-to-face with Boris Johnson could tell you.

It's enough to make you wonder how rare your condition would have to be before you were considered a medical okapi...

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*Unless someone had painted a horse to look like a zebra. Which would be a pretty weird thing to do.

**Hint: one of these is not actually a symptom.

Lyrically Sick

Apologies for the lack of blogging of late, I have been on holiday! I cunningly set my Interesting Medical Fact of the Week to automatically post on Monday, having written it last week, but don't be fooled. I spent the weekend at the Edinburgh Festival, which was amazing, and this week I'm at my boyfriend's house many miles away, so although technically I have had access to a computer, my impetus to blog has not really been there and also, nothing that exciting and medical has happened.

But no more! I have decided to get cracking on a post I intended to write some time ago, in which I will look at the lyrics of popular songs and attempt to diagnose the singer on the basis of the symptoms they describe experiencing when viewing their beloved.

Before you judge me, perhaps I should clarify that the song selection should in no way be held as representative of my own musical preferences and was chosen purely on the basis of medically interpretable lyrics. 

First up we have:

Olly Murs - Heart Skips A Beat - Postural Orthostatic Tachycardia Syndrome

So come on, spin me around 
I don’t wanna go home 
Cause when you hold me like this 
You know my heart skips, skips a beat

Olly Murs describes experiencing ectopic beats, or the sensation of a skipped or missed heartbeat - not to be confused with ectopic beets, which is when a beetroot grows in your fallopian tube. This is a very common form of cardiac arryhthmia, and indeed is really nothing to be concerned about in a healthy adult.

However, Mr Murs indicates that his palpitations occur only when the object of his affection spins him around and holds him in a particular way. This could indicate that he is suffering from postural orthostatic tachycardia syndrome, a condition in which the body struggles to deal with the changes in blood pressure occasioned by a change from a lying-down to an upright posture, or even by more minor changes in posture, and the heartrate increases dramatically as a result. Olly Murs may find his symptoms improved by increasing his fluid intake, taking regular exercise and wearing strong support tights.

Lady Gaga - Poker Face - Prosopagnosia

Can't read my, 
Can't read my,
No he can't read my poker face.

Ms Gaga reports that the apple of her eye is unable to read her poker face. Sad to say, he may well be suffering from a condition called prosopagnosia, also known as 'face blindness', in which the ability to recognise faces is affected. Sufferers may be unable to recognise even their own face, and are forced to rely on other qualities such as voice, gait, and clothing to tell people apart from one another. Ms Gaga would be able to help her friend to recognise her by, for example, picking a distinctive piece of clothing and always wearing it around him. Perhaps a hat made out of a telephone would suffice.

Katy Perry - E.T. - Capgras Delusion

Boy, you're an alien 
Your touch so foreign 
It's supernatural 
Extraterrestrial

In this song, Katy Perry appears to be under the impression that her significant other is from another planet. In this, it would seem likely that she is suffering from Capgras syndrome, in which the sufferer has the delusion that a close friend or relative has been replaced by an identical imposter. It may occur in cases of schizophrenia, dementia and brain injury, and it has been suggested that the Capgras delusion is in a sense the opposite of prosopagnosia, in that the person's ability to consciously recognise someone's face is intact, but they are lacking the unconscious emotional response to seeing the person's face.

Alas, that is all for now as I am totally out of inspiration. I may continue at some later date. Suggestions for songs/medical conditions greatly appreciated!

Medical Test Top Trumps

In relation to last night's post: Panic over! Turns out the darn thing is completely waterproof after all and I should have just left it on. Another example of my excellent sievebrain: good at draining pasta, not so good at retaining pertinent information about medical devices.

ANYWAY.

I am back from l'hôpital and I did indeed have an interesting time of it. While I did not appreciate waking up to an array of 23 blood tests yesterday morning, I can't deny that they hospital have been pretty darn thorough in their endeavours to understand what my pituitary tumour is doing to my metabolism! They also thoughtfully froze some spare blood - in case they later think of other blood tests they wish they'd done at the time. The tests were partly for research purposes into TSHoma and other rare thyroid conditions, and partly to decide how they want to move forward with my own treatment.

Here is a list of the tests and scans they did:

MRI Scan
CT Scan
PET Scan
DEXA Scans:
     - body composition
     - bone density (spine and hip/femur)
ECG heart trace
Step test
Actiheart 5-day heart rate and activity monitor
12 hour urine collection
Glucose tolerance test
GEM resting metabolic rate testing
TFT bloods
Blood pressure, blood oxygen, etc.
Symptoms/Quality of life questionnaire

Don't know what half of those acronyms stand for? Never fear, neither did I. All will become clear shortly. I had so many tests that there's no way on earth I could describe them all in one post, unless it was the longest and most terrifying blog post in the world, so I figure I'll go through what happened chronologically. In order to introduce an element of competition to the proceedings, I have decided to rate each medical test against a set of four criteria: Hassle (how much hassle the test was to undergo), Fun (how fun the test was. I may have to introduce minus scores), Weirdness (self explanatory) and Results (does the test produce a pretty picture/interesting information once completed).

Each type of test will be scored on a range of 0-5, and by the time I have finished it should be possible to play Emer's Medical Test Top Trumps. Just what you've always wanted!

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p.s. - forgot to mention, I took my camera with me as promised so I actually finally have a few photos to show you!

Once More Unto The Breach

Good morning my fine friends! I have now heard back from the endocrinologist about where I'm supposed to be going and at what time. 2 o'clock is zero hour! Also I don't think I mentioned in my last post that on Saturday she also informed me that I was banned from vigorous exercise and caffeinated drinks until I leave the hospital on Wednesday. Obviously I was distraught on both counts, but the lack of tea is starting to take its toll. One of my colleagues very kindly let me drink her herbal red berry tea all day at work yesterday when I realised I'd forgotten to bring in my own decaf alternative to the Altar to Caffeine which is provided by our tea fund, but it's just not quite the same.

Anyway, I won't be blogging in hospital but just you wait til I get out... Hopefully I'll have something halfway interesting to write about.

5 Things Healthy People Miss Out On

Over at Cushie Bloggers for the month of April, some bloggers took part in the Cushing's Awareness Challenge during April; the aim was to blog about something to do with Cushing's Disease every day of April. Well, I don't have Cushing's Disease, and it's now May. But the Challenge includes a list of prompts and suggestions of topics for bloggers with Cushing's disease to write about, and it looks like a good list to me for anyone with a pituitary adenoma to co-opt.

So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...

I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:

5 THINGS HEALTHY PEOPLE MISS OUT ON

Or: Why It Is Great To Be Me and Be Ill 

1. You always have an excuse.

"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"

In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.

Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.

2. Improved and terrifying knowledge of medical terminology.

You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.

3. A warm and fuzzy glow about UK taxation.

You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.

I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.

4. Joie De Vivre

It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*

5. Writing this blog

I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.

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*Disclaimer: I have never met a tuba player.

Break in Regular Service

My apologies for the lack of posts this week! I was really ill on Tuesday and have taken a while to recover. I'm currently at my parents' house enjoying the Easter bank holiday and looking forward to my return to eating chocolate tomorrow (I gave it up for Lent). I will try to get an IMFW out on Monday and then hopefully normal service should resume!

What Should I Blog About?

This is a question I frequently ask myself. Recently it occurred to me to use the Google AdWords Keywords search - which shows you the number of searches for particular keywords globally - to see how many searches are made every month for the different topics I write about on this blog. As you hopefully have noticed, I blog chiefly about my experiences with my rare tumour of the pituitary gland, which secretes too much thyroid stimulating hormone (TSH). This kind of pituitary adenoma is sometimes referred to as a thyrotropinoma, or a TSH-oma. But they're very rare, so I wondered - how many people are even looking for information about this online?

It's not looking good:

Thyrotropinoma: 28 searches per month.
TSH-oma: 480 searches per month.
TSH secreting pituitary adenoma: 170 searches per month.
Grand Total: 678 searches per month across the entire world.

So although no-one could deny that this blog has certainly found a niche in the market, it looks like my target audience is pretty minute. Hearteningly, searches for "pituitary adenoma" are much higher, so that may help. Plus, Blogger gives you a breakdown of the search terms that people used to find your blog, so you can see what searches are the most popular. It's an eclectic bunch; my favourites from the past week include "extreme fat men", "barber with no legs" and "can you get nigeri fowleri from picking your nose".

So in future I'm afraid those are the topics I'll be focusing on.

Anyway, this evening I'm off to the hospital for my latest MRI scan! Note that I use "latest" both in the sense of "most recent" and "overdue", as I was supposed to originally have it in February and they failed to book me in. Again. Nevermind! There's nothing I enjoy more than going for an MRI at 7pm at night. I didn't even know hospitals had outpatient appointments for scans that late in the evening!

Anyway, I shall be reporting back tomorrow...

Acromegaly: A Monstrous Illness?

Last week I wrote about the first of two websites which got me thinking about acromegaly, and I've been thinking away all weekend. The second thought-provoker was this post, on a blog about horror films, which mentions the little-known 1944 film The Monster Maker. Why is this film of interest? Because the plot centres around acromegaly. Kind of. Let's just say that The Monster Maker is to acromegaly as The Core is to science.

Brief disclaimer: I haven't watched this film, just read about it. But here's a rough synopsis; I can't imagine anyone's too worried about spoilers for a film that came out almost seventy years ago.

We start with one mad scientist, Dr. Igor Markoff.* Years previously, he injected his wife with the "acromegaly virus" for the rather melodramatic reason that he wants to disfigure her so that no other men would want her. Consequently, she committed suicide. In the present, he comes across Patricia, the daughter of a famous pianist, who just happens to look exactly like his dead wife. Before she developed acromegaly, presumably.

But Patricia isn't interested in Markoff's subtle advances.** So obviously, the logical course of action is for Markoff to infect her father with the "acromegaly virus" as well, and then use the prospect of a possible cure to blackmail him into getting her to marry Markoff. The ending of the film seems somewhat confused, but by all accounts it appears to involve a man in a gorilla suit. Because... well, why the hell not?

Leaving aside the dodgy science, and indeed the gorilla, this film sounds interesting. Patricia's father, Anthony Lawrence, becomes sick and deformed, taking on the appearance of a monster thanks to some serious effort on behalf of the makeup department; Igor Markoff looks entirely normal, except for his trademark I'm-an-evil-genius goatee. Lawrence's appearance inspires fear in the viewer; Markoff is the real monster. The moral of the story is so crushingly obvious that a child could pick up on it, although these days most children would probably be complaining that the film isn't scary enough - and besides, it's in black and white! What's that about? And why didn't they just CGI the gorilla? Seriously, WTF.

But people who suffer from disfiguring diseases like acromegaly and Cushing's Disease in real life don't have the advantage of B-movie actors and low budget sets to ram this point home to every stranger they run across in their daily life.

Acromegaly sufferers often experience discrimination because of their appearance. In advanced cases, as well as facial deformity and increased height, massive growth of soft tissues may give the impression of being overweight. The resultant discrimination can be particularly bad for women; activist Tanya Angus has spoken about how she's treated differently since developing the condition.

 Similarly, in Cushing's Disease, a pituitary tumour causes sufferers to put on weight, often to the point of obesity. Not for nothing has it been called "the Ugly Disease". But strangers don't know that; most people are likely to think that a person is overweight due to greed. To quote a Ricky Gervais joke "We all eat too much in the West. But it's people who say it's glandular, isn't it? It's not glandular, it's greed". Well, sometimes... it is glandular. It's pituitary glandular, it's adrenal glandular, it's thyroid glandular. Glands can seriously screw you over, as I have learned. It's difficult enough being diagnosed with a serious, hard-to-treat illness which causes physical pain and makes you fat and destroys your self-esteem. But to also have to put up with abuse from complete strangers who refuse to believe you're even ill must be horrific. And because Cushing's usually takes a long time to diagnose, sufferers often go years believing that it's their fault that they're putting on so much weight, even though they're eating healthily and exercising well.

These are problems that need to be addressed. It's bizarre that while it's now (happily) seen as unacceptable to discriminate against people on the grounds of race, gender or sexuality, discriminating against people who are overweight, and making assumptions about their medical conditions, seems to be ok.

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*N.B. that it's very important for mad scientists to have vaguely foreign-sounding names.

**He sends her flowers every single day, filled with creepy notes and messages. Oh, and he watches her continually. No matter what Twilight's told you, boys, stalking is not a romantic way to woo a lady.

Picture Me This

I have decided that what this blog is reallly lacking is pictures. As a graduate of the five-year-old-child school of picture-book thinking, I am pretty much certain that the ratio of writing to ANYTHING ELSE is skewed. This blog is VISUALLY DULL, and randomly writing phrases in capital letters will not help that.

I don't really have any exciting pituitary-adenoma-relevant pictures, other than maybe one of me in hospital with a big fat bloody nose right after surgery, and honestly that's a picture-book which the five-year-old child does not need to see. I don't even have a copy of one of my MRIs. But I am going to the zoo this weekend, so I guess I can always bring back a picture of a tiger...

Obviously I didn't take this picture, because it's actually good. Damn you, B_cool on Flickr!