As you ALMOST CERTAINLY already know, October is National Pituitary Awareness Month, that special time of year when pituitary tumourheads (and all our brethren in glandular ineptitude) come together to make sure that the rest of the world is giving us enough sympathy.
If I were a teenager and this was Facebook, I'd probably put at least six exclamation marks after that sentence. But I'm not and it's not, so you'll just have to imagine how excited I am. When I saw the announcement on the Pituitary Foundation's website, I pretty much looked like this cat.*
However, I quickly realised there was a problem.
You see, October isn't just National Pituitary Awareness month.
According to The Internet, it's also Lupus Awareness Month, National Cyber Security Month, Breast Cancer Awareness Month, LGBT History Month, National Dental Hygiene Month, Tuberous Sclerosis Complex Awareness Month, Fire Prevention Month, Black History Month and National Masturbation Month.** I mean, damn. How can the cruel and unusual defects of a little gland in your head compete?
So I decided that, in honour of National Pituitary Awareness Month, I would stand up and Do My Bit. And my bit consists of explaining exactly why you should ignore all the other months clamouring for your awareness.
Lupus Awareness Month.
Anyone who's ever watched House knows the answer to this one. It's never lupus.
National Cyber Security Month.
Frankly, I'm not sure it takes a whole month to work out that the Nigerian prince doesn't actually want to give you a million dollars. Next.
Breast Cancer Awareness Month.
Now, I'm not one to downplay the seriousness of breast cancer. But while there are bundles of breast cancer and general cancer charities in the UK, and they fundraise all year round, there's only one UK charity which covers the entire range of exciting things that can go wrong with your pituitary.
Nevertheless, while you're reading this, I guess you could give your boobs a quick jiggle.
Just to check they're ok.***
National Dental Hygiene Month.
Dental hygiene is normally a cause I can really get behind. But National Dental Hygiene month is sponsored by Wrigleys, and the website seems to put a lot more effort into persuading you to chew gum than to, you know, brush your teeth and not drink Ribena all the live-long day. Cynical marketing gimmicks do not a national month make.
Unless anyone wants to sponsor Pituitary Awareness Month, of course.
That would be different.
Fire Prevention Month.
Because the rest of the year, that smoking chip pan can take care of itself.
LGBT and Black History Months.
I am too big a fan of history to support restricting LGBT and black history to one month in a year. Straight white guys get 11 months a year (white girls get a look-in in March, for some reason) virtually to themselves? No, thank you.
Now, go and read about Bayard Rustin, Alice Dunbar-Nelson and Josephine Baker. But please make sure you look them up again in November.
Tuberous Sclerosis Complex Awareness Month.
Aw, shucks. I knew there was going to be something to weaken my resolve. I'd never heard of tuberous sclerosis complex. I was all geared up and prepared to laugh at the fact that no sane person who'd come into contact with Transport for London recently would touch anything tuberous with a bargepole.
But no. I have crumbled, like a poorly made biscuit wrenched prematurely from baking paper. Tuberous sclerosis complex sufferers have a crappy and obscure disease, and they probably do need a month and a bit of sympathy.
I guess maybe we could share October, after all.
So now, go forth and multiply, in full awareness of pituitary adenomas and tuberous sclerosis complex! Awareness: Because some day it might come up in a pub quiz.
___________________________________________________________________________
*Ok, no more cat pictures today. I promise.
** Just kidding. That's in May.
*** If you are a man, I suggest you find a volunteer. Or grow a nice pair of moobs. HINT: a pituitary adenoma producing prolactin will help.
Tuesday, 4 October 2011
Sunday, 2 October 2011
Hot Off The Press
I have struggled to write an introductory sentence to this post, and having tried and subsequently deleted four separate attempts, I've decided to do what I should have done in my German A Level exam and Just Get On With It.*
The Bad News
Just over a month ago I had a phone call from one of the many endocrinologists who like to talk about me behind my back (they call it having "Multi-Disciplinary Team Meetings", but I know the truth). Unfortunately, despite my surgery in April, my recent MRI has shown there's still a lot of tumour left. The tumour originally had an "area of cystic degeneration" (i.e. it was liquid inside like some kind of hideous chocolate fondant pudding) and although they managed to get rid of that, pretty much everything else (ie. the actual main bit of the adenoma) is still there. Which is obviously really rubbish. I'm not exactly surprised; although some of my symptoms have improved a bit since the operation, I am nowhere near better yet. But it's still disappointing, especially as the surgeons were optimistic that it had been a success. When you've had your skull drilled into, you expect results!
The Good News
The rather more surprising news came when I was at college a couple of weeks ago. I was sitting in a three-hour-long lecture given by a woman whose incredibly shouty teaching style implies that she may have been a sergeant major in a previous life. My phone went off; I dashed out, in the happy knowledge that midday phone calls are almost always from the hospital. It was indeed my charming endocrinologist, to inform me that the blood tests I had done a few days previously had come back completely normal. My thyroid hormone levels were all fine.
Obviously this was something of a (very welcome) shock, seeing as I've still got a lot of symptoms - my heartrate is improved but still high, I still shake and my hair is still falling out pretty badly. Apparently it can take a really long time for symptoms to clear up, even after your hormone levels are normal. Darnit!
From what my endocrinologist said, this is definitely A Good Thing. Apparently sometimes this kind of pituitary adenoma does seem to switch off-and-on in their production of hormones, so it's possible that my levels of thyroid hormone will go back up. On the other hand, it's not impossible that the tumour is finally paying attention to the Cease And Desist notices which the rest of of my body has been sending it for years. Even if it does start producing hormones again, at least my body will have had a bit of a break.
I have been trying not to get too excited about this and resign myself to the fact that, chances are, it will start up making hormones again. But it is kind of a challenge not to prance around a little bit. I was due to have a range of exciting metabolic tests plus a PET scan; those have all been cancelled. Instead of spending several hours in a tube being irradiated, I will be having blood tests every few weeks to monitor my hormone levels. The downside of this: it means that I shall spend several nervous days fretting about what the results will be.
Blood tests are on tuesday, not sure when the results will get back but I'll update this as soon as I know!
__________________________________________________________________
* For those of you interested in my youthful academic failures (and let's face it, who wouldn't be?) I managed to get a D in one German A Level paper about the Nazis because I spent the first forty-five minutes of the exam endlessly trying to write the first sentence and then crossing it out in disgust. The only German phrase that kept popping into my head was "Hitler beging Selbstmord",** but as the question was about the siege of Stalingrad, this was not helpful.
**"Hitler committed suicide"
The Bad News
Just over a month ago I had a phone call from one of the many endocrinologists who like to talk about me behind my back (they call it having "Multi-Disciplinary Team Meetings", but I know the truth). Unfortunately, despite my surgery in April, my recent MRI has shown there's still a lot of tumour left. The tumour originally had an "area of cystic degeneration" (i.e. it was liquid inside like some kind of hideous chocolate fondant pudding) and although they managed to get rid of that, pretty much everything else (ie. the actual main bit of the adenoma) is still there. Which is obviously really rubbish. I'm not exactly surprised; although some of my symptoms have improved a bit since the operation, I am nowhere near better yet. But it's still disappointing, especially as the surgeons were optimistic that it had been a success. When you've had your skull drilled into, you expect results!
The Good News
The rather more surprising news came when I was at college a couple of weeks ago. I was sitting in a three-hour-long lecture given by a woman whose incredibly shouty teaching style implies that she may have been a sergeant major in a previous life. My phone went off; I dashed out, in the happy knowledge that midday phone calls are almost always from the hospital. It was indeed my charming endocrinologist, to inform me that the blood tests I had done a few days previously had come back completely normal. My thyroid hormone levels were all fine.
Obviously this was something of a (very welcome) shock, seeing as I've still got a lot of symptoms - my heartrate is improved but still high, I still shake and my hair is still falling out pretty badly. Apparently it can take a really long time for symptoms to clear up, even after your hormone levels are normal. Darnit!
From what my endocrinologist said, this is definitely A Good Thing. Apparently sometimes this kind of pituitary adenoma does seem to switch off-and-on in their production of hormones, so it's possible that my levels of thyroid hormone will go back up. On the other hand, it's not impossible that the tumour is finally paying attention to the Cease And Desist notices which the rest of of my body has been sending it for years. Even if it does start producing hormones again, at least my body will have had a bit of a break.
I have been trying not to get too excited about this and resign myself to the fact that, chances are, it will start up making hormones again. But it is kind of a challenge not to prance around a little bit. I was due to have a range of exciting metabolic tests plus a PET scan; those have all been cancelled. Instead of spending several hours in a tube being irradiated, I will be having blood tests every few weeks to monitor my hormone levels. The downside of this: it means that I shall spend several nervous days fretting about what the results will be.
Blood tests are on tuesday, not sure when the results will get back but I'll update this as soon as I know!
__________________________________________________________________
* For those of you interested in my youthful academic failures (and let's face it, who wouldn't be?) I managed to get a D in one German A Level paper about the Nazis because I spent the first forty-five minutes of the exam endlessly trying to write the first sentence and then crossing it out in disgust. The only German phrase that kept popping into my head was "Hitler beging Selbstmord",** but as the question was about the siege of Stalingrad, this was not helpful.
**"Hitler committed suicide"
Thursday, 22 September 2011
A Brief History of Whine: Symptoms
So, as this blog is basically a self-contained whinge festival, I thought - what better way to spend my third post than in lengthy enumeration of my various aches and pains? It's important to remember that we're all essentially old people in training, and it's good to get a bit of practice in while you can.
People do ask about my symptoms, perhaps because of the slightly confusing fact that, whilst I technically have a brain tumour, I have thus far (very disobligingly) not gone obviously mental. Hospital drama scriptwriters would be very disappointed in me. I do get headaches - a classic sign! - but for the most part my symptoms have been to do with the hormonal side of the condition.
Contrary to popular opinion, hormone imbalance does not manifest itself solely as PMS/raving menopausal women rushing outside to cool down, despite the many undoubtedly hilarious jokes on the subject. In my case, I had a whole range of pituitary tumor symptoms which built up gradually over a number of years: my hair started falling out when I was in the sixth form at school; I was getting really hungry all the time; I felt the cold particularly badly (that one really baffled the doctors, as people with too much thyroid hormone are supposed to get too hot); I bruised incredibly easily;* my heartrate would go up for no reason; I kept getting ill with various coughs and colds.
That last point really managed to muddy the (already murky) waters of diagnosis. After starting university I was constantly in-and-out of the doctors; in my first year I had bronchitis, and in my second, glandular fever. If they gave out badges for GP visits, I'd have a full display case; in-between actual illnesses, I kept going back and complaining at them. Regular barrages of blood tests - including checking my thyroid - were carried out, and they all came back fine. If they gave out badges for hypochondria, I'd probably have been given one of those, too.
I only really managed to get my GP's attention in January 2010, when I developed tachycardia - i.e. my heartrate suddenly jumped up to about 140 bpm for no apparent reason.** That, for those of you who haven't experienced it, is a rubbish heartrate to have, given that your resting heartrate is supposed to be about 70-100 bpm. It's like constantly feeling that you've just sprinted several hundred metres. To evade a mountain lion. While wearing a dress designed by Lady Gaga Couture.
As well as a high heartrate, I had the shakes, and any loud noises suddenly became surprisingly stressful - plus, I kept twitching worse than Nick Clegg trying to throw off Cameron's Imperius Curse. Fortunately the doctors stuck me on beta blockers, the medication of the aged, and as long as I remembered to take them it wasn't too bad. I couldn't really do any strenuous exercise - but on the plus side, for the first month or two the pills gave me some excitingly vivid dreams.
The high heartrate eventually got a cardiologist involved, who ordered the right kind of thyroid function tests, which flagged up my very high levels of thyroid homornes, eventually led to diagnosis when they realised I was overproducing Thyroid Stimulating Hormone, blah blah. Since my pituitary surgery in April, some of my symptoms have improved; I've halved my dose of beta blockers and found that I can actually go running without collapsing like a pansy,*** which is definitely appreciated. I've had more headaches, though, so I guess it's swings and roundabouts.
So those are my crazy TSH-oma pituitary tumour symptoms! Or at least a quick run-down of the more important ones. I imagine that's more than enough for one post. Hopefully we can all agree that my old-lady bitching skills are being finely honed.
UPDATE: Click here to read my post about my first trip to hospital.
_______________________________________________________________________
* Current record: 22 bruises over three days, with no idea how they got there.
** Interestingly, but not relevantly, that's about the same heartrate as a domestic cat.
*** I tried jogging to catch a train in the summer of 2010 and even though I ran for less than a minute, I was hyperventilating for about half an hour afterwards. Caught the train, though. Slick.
People do ask about my symptoms, perhaps because of the slightly confusing fact that, whilst I technically have a brain tumour, I have thus far (very disobligingly) not gone obviously mental. Hospital drama scriptwriters would be very disappointed in me. I do get headaches - a classic sign! - but for the most part my symptoms have been to do with the hormonal side of the condition.
Contrary to popular opinion, hormone imbalance does not manifest itself solely as PMS/raving menopausal women rushing outside to cool down, despite the many undoubtedly hilarious jokes on the subject. In my case, I had a whole range of pituitary tumor symptoms which built up gradually over a number of years: my hair started falling out when I was in the sixth form at school; I was getting really hungry all the time; I felt the cold particularly badly (that one really baffled the doctors, as people with too much thyroid hormone are supposed to get too hot); I bruised incredibly easily;* my heartrate would go up for no reason; I kept getting ill with various coughs and colds.
That last point really managed to muddy the (already murky) waters of diagnosis. After starting university I was constantly in-and-out of the doctors; in my first year I had bronchitis, and in my second, glandular fever. If they gave out badges for GP visits, I'd have a full display case; in-between actual illnesses, I kept going back and complaining at them. Regular barrages of blood tests - including checking my thyroid - were carried out, and they all came back fine. If they gave out badges for hypochondria, I'd probably have been given one of those, too.
I only really managed to get my GP's attention in January 2010, when I developed tachycardia - i.e. my heartrate suddenly jumped up to about 140 bpm for no apparent reason.** That, for those of you who haven't experienced it, is a rubbish heartrate to have, given that your resting heartrate is supposed to be about 70-100 bpm. It's like constantly feeling that you've just sprinted several hundred metres. To evade a mountain lion. While wearing a dress designed by Lady Gaga Couture.
As well as a high heartrate, I had the shakes, and any loud noises suddenly became surprisingly stressful - plus, I kept twitching worse than Nick Clegg trying to throw off Cameron's Imperius Curse. Fortunately the doctors stuck me on beta blockers, the medication of the aged, and as long as I remembered to take them it wasn't too bad. I couldn't really do any strenuous exercise - but on the plus side, for the first month or two the pills gave me some excitingly vivid dreams.
The high heartrate eventually got a cardiologist involved, who ordered the right kind of thyroid function tests, which flagged up my very high levels of thyroid homornes, eventually led to diagnosis when they realised I was overproducing Thyroid Stimulating Hormone, blah blah. Since my pituitary surgery in April, some of my symptoms have improved; I've halved my dose of beta blockers and found that I can actually go running without collapsing like a pansy,*** which is definitely appreciated. I've had more headaches, though, so I guess it's swings and roundabouts.
So those are my crazy TSH-oma pituitary tumour symptoms! Or at least a quick run-down of the more important ones. I imagine that's more than enough for one post. Hopefully we can all agree that my old-lady bitching skills are being finely honed.
UPDATE: Click here to read my post about my first trip to hospital.
_______________________________________________________________________
* Current record: 22 bruises over three days, with no idea how they got there.
** Interestingly, but not relevantly, that's about the same heartrate as a domestic cat.
*** I tried jogging to catch a train in the summer of 2010 and even though I ran for less than a minute, I was hyperventilating for about half an hour afterwards. Caught the train, though. Slick.
Friday, 16 September 2011
So what the hell is actually wrong with you, anyway?
I have long since realised that different people have different levels of interest in what the hell is actually wrong with me anyway, but unfortunately everyone is forced to ask the question in the same way, because Victorian standards of etiquette insist that adding the phrase "Seriously, though, I don't want some really long explanation" after the phrase "So what is your illness?" is rude. Those crazy Victorians! It's political correctness gone mad.
But I am totally fine with that and equally well aware that, whilst phrases such as "cystic degeneration" and "scooping the tumour out through your nose like in Ancient Egypt" undoubtedly have their place, they may result in queasiness among the populace. Especially when sprung on people unexpectedly.
To this end, I have decided to create a variety of possible explanations for what's wrong with me, and you can select the one that appears most suited to your needs.
The Short Explanation:
There's a gland in your head called the pituitary gland. Mine has a tumour on it.
The Long Explanation:
There's a gland just under your brain called the pituitary gland (see above for a quick explanation) which makes a whole bunch of hormones. My pituitary has developed a tumour known as a pituitary adenoma (see the About section for more details). Fortunately the tumour is benign, but it makes a hormone called Thyroid Stimulating Hormone (TSH), which results in me having too much thyroid hormone; that creates all kinds of exciting symptoms like a superfast heartrate and the shakes.*
The Explanation In German:
Die Hypophyse ist eine endokrine Drüse, die unter dem Hirn liegt. Ich habe einen hypophysären Tumor, der Schilddrüsenhormon macht; also habe ich Symptome von Hyperthyreoidismus.
Leider ist mein Deutsch sehr schlecht, also vielleicht ergibt die vorhergehenden Absätze keinen Sinn...
The Explanation In Rhyme:
The pituitary gland
is like a small grain of sand
(except it's the size of a pea).
It sits in your head,
well-behaved (or, instead,
it might swell up exponentially).
My pituitary gland
is a meanie; he's banned
from attending well-thought-of events.
So now he just chooses
to sulk, and he oozes
hormones, with the worst of intents.
I am happy to create further explanations to suit your explanatory needs, although they may not all be entirely explicatory or, indeed, explicable.
* Incidentally, if I've ever been mean/stupid/lazy/exhibited any other undesirable character traits in your presence, it's probably also because of the tumour. I'm actually a really great person.**
** This may or may not be entirely or indeed at all true >.>
But I am totally fine with that and equally well aware that, whilst phrases such as "cystic degeneration" and "scooping the tumour out through your nose like in Ancient Egypt" undoubtedly have their place, they may result in queasiness among the populace. Especially when sprung on people unexpectedly.
To this end, I have decided to create a variety of possible explanations for what's wrong with me, and you can select the one that appears most suited to your needs.
The Short Explanation:
There's a gland in your head called the pituitary gland. Mine has a tumour on it.
The Long Explanation:
There's a gland just under your brain called the pituitary gland (see above for a quick explanation) which makes a whole bunch of hormones. My pituitary has developed a tumour known as a pituitary adenoma (see the About section for more details). Fortunately the tumour is benign, but it makes a hormone called Thyroid Stimulating Hormone (TSH), which results in me having too much thyroid hormone; that creates all kinds of exciting symptoms like a superfast heartrate and the shakes.*
The Explanation In German:
Die Hypophyse ist eine endokrine Drüse, die unter dem Hirn liegt. Ich habe einen hypophysären Tumor, der Schilddrüsenhormon macht; also habe ich Symptome von Hyperthyreoidismus.
Leider ist mein Deutsch sehr schlecht, also vielleicht ergibt die vorhergehenden Absätze keinen Sinn...
The Explanation In Rhyme:
The pituitary gland
is like a small grain of sand
(except it's the size of a pea).
It sits in your head,
well-behaved (or, instead,
it might swell up exponentially).
My pituitary gland
is a meanie; he's banned
from attending well-thought-of events.
So now he just chooses
to sulk, and he oozes
hormones, with the worst of intents.
I am happy to create further explanations to suit your explanatory needs, although they may not all be entirely explicatory or, indeed, explicable.
* Incidentally, if I've ever been mean/stupid/lazy/exhibited any other undesirable character traits in your presence, it's probably also because of the tumour. I'm actually a really great person.**
** This may or may not be entirely or indeed at all true >.>
Wednesday, 14 September 2011
Why, God, Why?
Good morning world! Welcome to my new blog. I intend to use it to further the cause of all extreme right-wing politics, and particularly that modern-day angel Michelle Bachmann, who (I've been reliably informed) is probably sane.
I kid, I kid. It's actually about the tumour in my head (much more palatable now, huh?). There are five main reasons why I started this blog, and I quickly realised that an easy way to get out of writing a proper first post is to list them in full:
1. The pun in the title was too good to pass up.
2. I like talking too much.
3. I may have recently developed some kind of horrible blogging addiction.*
4. People often want to ask me questions about how I'm doing/what actually is wrong with me and I tend to confuse them with the answers.
5. To be a vaguely useful repository of information about pituitary adenomas.
So there you have it. I guess the best thing to do would be to give a chronological account of the various things that have happened; diagnosis, initial treatment, surgery etc. etc. But I seriously doubt I have the attention span for it. I shall strain every sinew to give a fairly detailed account of my experience of surgery (well, not the actual gross pass-me-the-chainsaw-nurse part, but certainly the bits I was awake for) because before I had my surgery I wanted to know what to expect, and wished that other bloggers with pituitary adenomas had gone into more detail about it. But other than that, who knows? If you have any questions, feel free to ask.
* I also have a blog dedicated largely to nice photographs which I've taken and a blog of vaguely amusing cupcake pictures I've drawn. Oh, and in my capacity as volunteer marketing lady I am developing a secret blog in secret, like some kind of sinister top-grade weapons manufacturer. Possibly at some point I may need to stop in order to sleep.
I kid, I kid. It's actually about the tumour in my head (much more palatable now, huh?). There are five main reasons why I started this blog, and I quickly realised that an easy way to get out of writing a proper first post is to list them in full:
1. The pun in the title was too good to pass up.
2. I like talking too much.
3. I may have recently developed some kind of horrible blogging addiction.*
4. People often want to ask me questions about how I'm doing/what actually is wrong with me and I tend to confuse them with the answers.
5. To be a vaguely useful repository of information about pituitary adenomas.
So there you have it. I guess the best thing to do would be to give a chronological account of the various things that have happened; diagnosis, initial treatment, surgery etc. etc. But I seriously doubt I have the attention span for it. I shall strain every sinew to give a fairly detailed account of my experience of surgery (well, not the actual gross pass-me-the-chainsaw-nurse part, but certainly the bits I was awake for) because before I had my surgery I wanted to know what to expect, and wished that other bloggers with pituitary adenomas had gone into more detail about it. But other than that, who knows? If you have any questions, feel free to ask.
* I also have a blog dedicated largely to nice photographs which I've taken and a blog of vaguely amusing cupcake pictures I've drawn. Oh, and in my capacity as volunteer marketing lady I am developing a secret blog in secret, like some kind of sinister top-grade weapons manufacturer. Possibly at some point I may need to stop in order to sleep.
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