And as a Halloween bonus, you cannot fail to gain a point today :)
Pituitary Awareness Quiz
Day 11, Question 11
Q.11: Have you learned anything about the pituitary gland from taking part in this quiz?
a) Yes
b) Indeed
Wednesday, 31 October 2012
Pituitary Awareness Quiz: The final day!
Thanks to everyone who has partaken of the quiz! Today is not just Halloween, it's also the end of National Pituitary Awareness Month, which is obviously both far more important and far more tragic. Hopefully you have been educated and enthralled; probably not, but I am deeply optimistic. Today is your last chance to answer any questions you haven't answered yet - then tomorrow I shall publish the correct answers and, of course, the winner!
And as a Halloween bonus, you cannot fail to gain a point today :)
Q.11: Have you learned anything about the pituitary gland from taking part in this quiz?
a) Yes
b) Indeed
And as a Halloween bonus, you cannot fail to gain a point today :)
Q.11: Have you learned anything about the pituitary gland from taking part in this quiz?
a) Yes
b) Indeed
Tuesday, 30 October 2012
Pituitary Awareness Quiz: Day 11
Pituitary Awareness Quiz
Day 11, Question 11
Q.11: Who is this man, and what does he have to do with the pituitary gland? No multiple-choice today I'm afraid... you're on your own!
Monday, 29 October 2012
Pituitary Awareness Quiz: Day 10
Another day missed! Apologies. I do have an exciting update but I'm not sure I'm up to typing it all this evening. Consequently, I present today's super simple question:
Q.10: What hormone does my pituitary tumour overproduce?
a) Thyroid stimulating hormone
b) Thyrotropin releasing hormone
c) Thyroid hormone
Pituitary Awareness Quiz
Day 10, Question 10
Q.10: What hormone does my pituitary tumour overproduce?
a) Thyroid stimulating hormone
b) Thyrotropin releasing hormone
c) Thyroid hormone
Saturday, 27 October 2012
Pituitary Awareness Quiz: Day 9
Eagle-eyed readers will have noted that this is in fact Day 10, but I abjectly failed to write a question yesterday (though I did write a poem, which is nearly as good) so it's only question nine. I could have called this Day 10, Question 9, but that just seems confusing so I'm working on the basis that yesterday was just a small aberration in time and space, and the quiz will continue from here!
Q.9: Which of the below is the correct spelling of the full name of the pituitary hormone ACTH? (no cheating!)
a) adrenalcortecotropic hormone
b) adrenecorticotropic hormone
c) adrenalcorticotropic hormone
d) adrenocorticotropic hormone
Pituitary Awareness Quiz
Day 9, Question 9
Q.9: Which of the below is the correct spelling of the full name of the pituitary hormone ACTH? (no cheating!)
a) adrenalcortecotropic hormone
b) adrenecorticotropic hormone
c) adrenalcorticotropic hormone
d) adrenocorticotropic hormone
Friday, 26 October 2012
Schrödinger's MRI Scan (A Hallowe'en Special)
Some time ago, I received an appointment from the hospital for an MRI scan on the 31st October. I immediately - and diligently - phoned them up to ask whether or not this was a mistake. I had been due to have a scan after three continuous months on my current medication, and due to delays in getting funding for my lanreotide injections, I'd not had one for two months at that point. I was told not to cancel the appointment, and that I would be informed of whether or not to go.
I've reminded them about this twice since, and both times been informed that I almost certainly won't need to have the scan on the 31st - because it would be wildly pointless - but that I shouldn't cancel it, and it will be rearranged.
Well, the scan is next Wednesday (on Hallowe'en, no less!) and I've still heard bugger all. I don't know what the cost of an MRI scan is to the NHS, but I do know that the scanners at my local hospital can sometimes be booked up months in advance, and for me to be hanging on to an appointment I don't need, or to have a scan that won't be particularly useful to my doctors, is stupid.
I was going to attempt to call and remind them about this at lunchtime today, but I was hit by a sudden feeling of futility and hopelessness, so I composed a poem about it instead.
***
My MRI on Wednesday is sure to be a blast
I'll have more scans in future; I've had some in the past.
But this one will be special, for there's something I don't know -
Nobody has informed me whether or not I should go!
I can't say if they're expecting me to turn up on the day,
Or whether they'll be angry if instead I stay away.
I'm caught in a Catch-22, for I've no way of knowing
if I should go (or not) until I am already going.
It's Schrödinger's MRI scan, with my head inside the box
I'm quantumly entangled like a cat (or like a fox.
The fox is very prone to being used in paradoxes
For it's fairly cute and docile, and it wears such tiny sockses.)
My scan is not alive, yet its brain function has not ended
In terms of animation, it is currently suspended.
Like Dracula, there's still a chance it may rise from the grave;
EEG scans indicate disrupted delta waves.
Perhaps, for Hallowe'en, the MRI team has decided
that they're sick of being left out, and cruelly derided
(The other hospital staff tend to laugh and call them names
because, you see, they claim all MRI scans look the same).
And consequently they've now all come up with this little caper
(Which I find about as funny as a piece of plain white paper)
They won't click "confirm appointment", neither will they click "delete"
And when I show up for my scan, they'll all shout: "Trick or treat!"
I've reminded them about this twice since, and both times been informed that I almost certainly won't need to have the scan on the 31st - because it would be wildly pointless - but that I shouldn't cancel it, and it will be rearranged.
Well, the scan is next Wednesday (on Hallowe'en, no less!) and I've still heard bugger all. I don't know what the cost of an MRI scan is to the NHS, but I do know that the scanners at my local hospital can sometimes be booked up months in advance, and for me to be hanging on to an appointment I don't need, or to have a scan that won't be particularly useful to my doctors, is stupid.
I was going to attempt to call and remind them about this at lunchtime today, but I was hit by a sudden feeling of futility and hopelessness, so I composed a poem about it instead.
***
My MRI on Wednesday is sure to be a blast
I'll have more scans in future; I've had some in the past.
But this one will be special, for there's something I don't know -
Nobody has informed me whether or not I should go!
I can't say if they're expecting me to turn up on the day,
Or whether they'll be angry if instead I stay away.
I'm caught in a Catch-22, for I've no way of knowing
if I should go (or not) until I am already going.
It's Schrödinger's MRI scan, with my head inside the box
I'm quantumly entangled like a cat (or like a fox.
The fox is very prone to being used in paradoxes
For it's fairly cute and docile, and it wears such tiny sockses.)
My scan is not alive, yet its brain function has not ended
In terms of animation, it is currently suspended.
Like Dracula, there's still a chance it may rise from the grave;
EEG scans indicate disrupted delta waves.
Perhaps, for Hallowe'en, the MRI team has decided
that they're sick of being left out, and cruelly derided
(The other hospital staff tend to laugh and call them names
because, you see, they claim all MRI scans look the same).
And consequently they've now all come up with this little caper
(Which I find about as funny as a piece of plain white paper)
They won't click "confirm appointment", neither will they click "delete"
And when I show up for my scan, they'll all shout: "Trick or treat!"
Thursday, 25 October 2012
Pituitary Awareness Quiz: Day 8
I received one incredibly excellent poem in response to yesterday's question, I thoroughly encourage you all to go check it out! (And remember; it's never too late to respond!)
Today's question will be rather more staid and run-of-the-mill, however it may require a little detective work to find the right answer. Equally though, you have a fifty-fifty chance of getting it right without doing the legwork! But if you get it wrong, you'll look kind of foolish right? Hmm... tricksy.
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?
a) Yes
b) No
Today's question will be rather more staid and run-of-the-mill, however it may require a little detective work to find the right answer. Equally though, you have a fifty-fifty chance of getting it right without doing the legwork! But if you get it wrong, you'll look kind of foolish right? Hmm... tricksy.
Pituitary Awareness Quiz
Day 8, Question 8
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?
a) Yes
b) No
Wednesday, 24 October 2012
Pituitary Awareness Quiz: Day 7
Regular readers will be unsurprised to hear that I still have not heard back from the hospital about, you know, getting my surgery arranged or whether I need to go to the MRI I'm due to have in a week. I had a really special time on Friday when I tried to contact the neurosurgery clinic to find out what the heck was going on. It went something like this:
Attempt 1:
Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, could you put me through to the neurosurgery clinic please?
Hospital Employee 1: (suddenly speaking s-l-o-w-l-y and clearly) Yes, of course, I'll put you through now.
(A pause. The phone rings.)
Hospital Employee 2: Hello, Dermatology department. How can I help?
Attempt 2:
Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, I just called to be put through to neurosurgery but I ended up on the dermatology phone instead?
Hospital Employee 1: Oh, sorry about that. I'll just connect you now.
(A pause. The phone rings.)
(For like five minutes, then I gave up)
On attempt 3 I got through to the Neuroscience answering machine and left a message, but I'm not hugely sanguine about the results, especially as they've now had three days to phone me. Oi vey!
Anyway, today's question is a more creative question. Presenting:
Attempt 1:
Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, could you put me through to the neurosurgery clinic please?
Hospital Employee 1: (suddenly speaking s-l-o-w-l-y and clearly) Yes, of course, I'll put you through now.
(A pause. The phone rings.)
Hospital Employee 2: Hello, Dermatology department. How can I help?
Attempt 2:
Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, I just called to be put through to neurosurgery but I ended up on the dermatology phone instead?
Hospital Employee 1: Oh, sorry about that. I'll just connect you now.
(A pause. The phone rings.)
(For like five minutes, then I gave up)
On attempt 3 I got through to the Neuroscience answering machine and left a message, but I'm not hugely sanguine about the results, especially as they've now had three days to phone me. Oi vey!
Anyway, today's question is a more creative question. Presenting:
Pituitary Awareness Quiz
Day 7, Question 7
Q.7: I will be awarding a SPECTACULAR bonus of no less than FIVE POINTS to anyone who can write me a short poem (two lines is sufficient) about/vaguely related to the pituitary. Bonus points for anyone who finds a rhyme for "pituitary"!
Tuesday, 23 October 2012
Pituitary Awareness Quiz: Day 6
Yesterday's animal-based question proved wildly unpopular. So I thought I'd leave animal-based questions behind and go for a classic history lesson set-up!
National Pituitary Awareness Month Pituitary Awareness Quiz
Day 6, Question 6
Q.6: Only one of the following pituitary-related conditions was first identified by a woman named Cindy. But which one was it?
a) Sheehan Syndrome
b) Cushing's Syndrome
c) Addison's Disease
d) Pituitary apoplexy
a) Sheehan Syndrome
b) Cushing's Syndrome
c) Addison's Disease
d) Pituitary apoplexy
Monday, 22 October 2012
Pituitary Awareness Quiz: Day 5
Aloha! Today's question is rather late, I very nearly forgot to write it at all. Nearly... but not quite! The nice thing about doing this quiz has been that I've also learned things about the pituitary and its various hormones that I never knew before. And so, ladies and gentlemen, I present:
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?
a) Dolphin
b) Guinea Pig
c) Chimp
d) Camel
e) Owlbear
National Pituitary Awareness Month Pituitary Awareness Quiz
Day 5, Question 5
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?
a) Dolphin
b) Guinea Pig
c) Chimp
d) Camel
e) Owlbear
 |
| Bonus Question: How do you extract an owlbear's pituitary? |
Sunday, 21 October 2012
Growth Hormone and Creutzfeldt-Jakob Disease
It's National Pituitary Awareness Month, and I thought I should look for an interesting pituitary-related story to tell you all. As it turned out, I didn't have to look too far.
Most people living in Britain today will remember the 1996 scare about "mad cow disease" or BSE (in cows the disease is called Bovine Spongiform Encephalopathy; when it's passed to humans it's variant Creutzfeldt-Jakob Disease or vCJD). It’s an extremely nasty degenerative brain disease, invariably fatal, and there was huge concern that beef contaminated with the disease had been in the food chain for some time. The illness can have a latency period of up to ten years before symptoms appear (or much, much longer according to some researchers), making it very difficult to trace the cause of the illness - and meaning that no-one has any definite idea how many people could have been infected. As of October 2009, there had been 166 identified cases of the illness in the UK.
It was a huge scandal in the UK, and I remember as a child being disappointed that I wasn't allowed to eat roast beef for what felt like a very long time - although admittedly this was less because I loved roast beef and more because I loved the accompanying Yorkshire pudding my mum served with it. But until recently I was not aware of a similar, albeit smaller-scale scandal that had occurred several years earlier.
Between 1963 and 1985, the US Government funded a programme which provided human growth hormone to children across the US who had failed to grow as expected. Failure to grow in children is sometimes due to a deficiency in growth hormone (surprise!) and this is still a treatment for children today; the difference is that these days it's made in a lab, while at that time it was extracted directly from the pituitary glands of human cadavers.
In 1985, it came to light that three of the people treated with human growth hormone (hGH) had gone on to die of Creutzfeldt-Jakob Disease. This is not the same illness as vCJD but it is similar - and it's very, very rare. The programme was stopped immediately and an investigation launched.
To date, 29 of the people treated with hGH in the US before 1977 have been diagnosed with CJD. That's about one in 95. The rates were much higher in some other countries; in the UK, which produced its own hGH, 64 of the 1849 people treated developed CJD; and in France, which also produced its own hGH, 119 out of 1700 patients went on to develop the disease. There have been cases reported in numerous other countries; the variation in incidence is likely due to the variation in the way the hormone was extracted and processed.
The longest latency period recorded between someone receiving human Growth Hormone and going on to develop CJD is 38 years. The shortest period before developing symptoms with these kind of diseases is usually around 2 - 3 years. The symptoms progress very quickly, within just a few months, from dizziness, difficulty balancing and clumsiness to memory loss, seizures and death.
Most disturbingly of all, however, it later came to light that far more of the patients who had been treated with hGH went on to die of adrenal crisis - an entirely treatable problem - than of CJD. This problem isn't caused by the hGH treatment, it's simply the case that people with a growth hormone deficiency are more likely to also be deficient in other pituitary hormones, such as ACTH. Without sufficient ACTH, you will die - but safe and effective hormone replacement is available for people whose bodies don't produce enough ACTH. It's simply that their doctors failed to pick up on the fact that these people were ACTH-deficient until it was too late.
Most people living in Britain today will remember the 1996 scare about "mad cow disease" or BSE (in cows the disease is called Bovine Spongiform Encephalopathy; when it's passed to humans it's variant Creutzfeldt-Jakob Disease or vCJD). It’s an extremely nasty degenerative brain disease, invariably fatal, and there was huge concern that beef contaminated with the disease had been in the food chain for some time. The illness can have a latency period of up to ten years before symptoms appear (or much, much longer according to some researchers), making it very difficult to trace the cause of the illness - and meaning that no-one has any definite idea how many people could have been infected. As of October 2009, there had been 166 identified cases of the illness in the UK.
 |
| Beware! This could be a mad cow. |
Between 1963 and 1985, the US Government funded a programme which provided human growth hormone to children across the US who had failed to grow as expected. Failure to grow in children is sometimes due to a deficiency in growth hormone (surprise!) and this is still a treatment for children today; the difference is that these days it's made in a lab, while at that time it was extracted directly from the pituitary glands of human cadavers.
In 1985, it came to light that three of the people treated with human growth hormone (hGH) had gone on to die of Creutzfeldt-Jakob Disease. This is not the same illness as vCJD but it is similar - and it's very, very rare. The programme was stopped immediately and an investigation launched.
To date, 29 of the people treated with hGH in the US before 1977 have been diagnosed with CJD. That's about one in 95. The rates were much higher in some other countries; in the UK, which produced its own hGH, 64 of the 1849 people treated developed CJD; and in France, which also produced its own hGH, 119 out of 1700 patients went on to develop the disease. There have been cases reported in numerous other countries; the variation in incidence is likely due to the variation in the way the hormone was extracted and processed.
The longest latency period recorded between someone receiving human Growth Hormone and going on to develop CJD is 38 years. The shortest period before developing symptoms with these kind of diseases is usually around 2 - 3 years. The symptoms progress very quickly, within just a few months, from dizziness, difficulty balancing and clumsiness to memory loss, seizures and death.
Most disturbingly of all, however, it later came to light that far more of the patients who had been treated with hGH went on to die of adrenal crisis - an entirely treatable problem - than of CJD. This problem isn't caused by the hGH treatment, it's simply the case that people with a growth hormone deficiency are more likely to also be deficient in other pituitary hormones, such as ACTH. Without sufficient ACTH, you will die - but safe and effective hormone replacement is available for people whose bodies don't produce enough ACTH. It's simply that their doctors failed to pick up on the fact that these people were ACTH-deficient until it was too late.
Pituitary Awareness Quiz: Day 4
And we're on to day four! Today I have chosen not to do a multiple choice question, which is perhaps slightly evil - but equally it's a fairly easy question, so you should be fine. Ready, set.... Google!
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?
National Pituitary Awareness Month Pituitary Awareness Quiz
Day 4, Question 4
Day 4, Question 4
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?
Saturday, 20 October 2012
Pituitary Awareness Quiz: Day 3
I have to say, I have been delighted almost beyond reason by the responses I have received so far! Today I seemed to spend a lot of my time making pies (apple crumble and puff pastry chicken pie with peppers), and playing boardgames (I don't even remember their names), it was excellent. But it left an unfortunately small amount of time for writing today's question. Nevertheless, allow me to present:
Q.3: Which of these is an alternative name for the pituitary stalk?
a) The fungible branch
b) The expungable peduncle
c) The infundibular stem
d) The peduncular pedicle
National Pituitary Awareness Month Pituitary Awareness Quiz
Day 3, Question 3
Q.3: Which of these is an alternative name for the pituitary stalk?
a) The fungible branch
b) The expungable peduncle
c) The infundibular stem
d) The peduncular pedicle
Friday, 19 October 2012
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!).
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!
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!
Thursday, 18 October 2012
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!
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!
_____________________________________
* 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.
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!
_____________________________________
* 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.
Wednesday, 17 October 2012
Back to La Cura
Regular readers who have not grown tired of my recent lack of posting
may recall that a little while ago I posted a link to a website called
Open Source Cure, created by an Italian man, Salvatore Iaconesi, who has
been diagnosed with brain cancer. BBC News has recently done a piece
about the website, which has provoked a huge response in terms of both
medical advice, messages of support and artwork. Apparently the public
reaction to the website and Mr Iaconesi's interactions with various
doctors have influenced the way in which his brain surgery is going to
be carried out, and the Italian government have even picked up on the
site's popularity, and is now looking at opening up patients' medical
records.
It's quite an incredible response to see. Many people, myself included,
turn to blogging as a way of venting the frustrations of being ill and
dealing with hospitals, as a way of updating friends and family on how
we are, and as a way of connecting with other people in similar
situations. When you have a rare illness like thyrotropinoma, it's
seriously unlikely that you'll know anyone who's been through the same
thing in real life, so it's natural to reach out to others online. But the concept of
seeking not only support and tips but also actual medical advice on
treatments and surgical techniques from complete strangers - from the
whole world - is a pretty unique approach. Given the difficulty that
people with rare medical conditions can have in accessing doctors with
sufficient (or indeed any) experience in the treatment of their illness,
perhaps it's something that will become increasingly common.
may recall that a little while ago I posted a link to a website called
Open Source Cure, created by an Italian man, Salvatore Iaconesi, who has
been diagnosed with brain cancer. BBC News has recently done a piece
about the website, which has provoked a huge response in terms of both
medical advice, messages of support and artwork. Apparently the public
reaction to the website and Mr Iaconesi's interactions with various
doctors have influenced the way in which his brain surgery is going to
be carried out, and the Italian government have even picked up on the
site's popularity, and is now looking at opening up patients' medical
records.
It's quite an incredible response to see. Many people, myself included,
turn to blogging as a way of venting the frustrations of being ill and
dealing with hospitals, as a way of updating friends and family on how
we are, and as a way of connecting with other people in similar
situations. When you have a rare illness like thyrotropinoma, it's
seriously unlikely that you'll know anyone who's been through the same
thing in real life, so it's natural to reach out to others online. But the concept of
seeking not only support and tips but also actual medical advice on
treatments and surgical techniques from complete strangers - from the
whole world - is a pretty unique approach. Given the difficulty that
people with rare medical conditions can have in accessing doctors with
sufficient (or indeed any) experience in the treatment of their illness,
perhaps it's something that will become increasingly common.
Tuesday, 16 October 2012
October's Injection
I went to the hospital on the first of October to have my latest lanreotide injection. It feels like ages ago now! They're a long-acting formulation, so they last for about four weeks in your system, meaning that the next one is due on or around the 29th October. Of course, I don't have a date or an appointment to get the next one. That would make life far too easy!
I have slightly begun to wonder whether the hospital has enrolled me in some kind of secret government trial without my knowledge and against my will, where they gradually increase their level of administrative incompetence every month, and see how long it takes before I start frothing at the mouth.
Anyway, I went for the injection and dragged my boyfriend along to the hospital with me, to keep me company during the (usually fairly lengthy) wait. Of course, this was the one time that there was virtually no hanging around, and I was whisked away into the endocrine nurses' lair almost as soon as I arrived. I did request that he get me a coffee while he waited - but as he is not a drinker of hot caffeinated beverages, he became overwhelmed by the variety of -accinos on offer, and consequently I had to buy it myself afterwards. So I decided to publicly shame him on this blog. Friends and family, be warned.
The injection itself wasn't too bad, I'm not going to repeat my usual "sweet jesus guys it's a MASSIVE FREAKING NEEDLE" post (oh wait; yes I am. It's HUGE). The nurse giving me the injection was very apologetic and really somewhat incensed by the delays that I'd had in trying to get it - apparently not only had it taken longer than usual to garner various signatures because everyone had been on holiday, but they also managed to lose the paperwork at some point. Ah, the NHS at its finest.
The long and the short of it is that I'm pretty well determined to write a letter of complaint to the hospital, finally. I don't enjoy writing letters and I've kind of been putting it off, but I really should do it. As anyone who reads this blog regularly must be aware, I spend a frankly alarming amount of time chasing the hospital up about things they've promised to arrange and then entirely failed or forgotten to deliver - and aside from anything else, even ignoring their track history, it really can't be acceptable that patients' treatment is delayed by a month because a doctor goes on holiday. If I go on holiday from my [insert mystery job here] and something needs to get signed off, my colleagues can sign it off for me after checking my notes. I appreciate that medicine is a rather more high-risk calling than [insert lowly job here] but I refuse to believe that in hospitals across the country no-one gets treatment in August because half the doctors are sunning themselves in the south of France.
Post-hospital (and post-coffee) we trudged back to my house, limping slightly (well, I was limping). Unfortunately, having to go all the way to the hospital for these injections means much more walking immediately afterwards, and my leg is quite sore for a few hours. By the evening though, I was fully recovered and even went dancing, which was excellent!
I have slightly begun to wonder whether the hospital has enrolled me in some kind of secret government trial without my knowledge and against my will, where they gradually increase their level of administrative incompetence every month, and see how long it takes before I start frothing at the mouth.
Anyway, I went for the injection and dragged my boyfriend along to the hospital with me, to keep me company during the (usually fairly lengthy) wait. Of course, this was the one time that there was virtually no hanging around, and I was whisked away into the endocrine nurses' lair almost as soon as I arrived. I did request that he get me a coffee while he waited - but as he is not a drinker of hot caffeinated beverages, he became overwhelmed by the variety of -accinos on offer, and consequently I had to buy it myself afterwards. So I decided to publicly shame him on this blog. Friends and family, be warned.
The injection itself wasn't too bad, I'm not going to repeat my usual "sweet jesus guys it's a MASSIVE FREAKING NEEDLE" post (oh wait; yes I am. It's HUGE). The nurse giving me the injection was very apologetic and really somewhat incensed by the delays that I'd had in trying to get it - apparently not only had it taken longer than usual to garner various signatures because everyone had been on holiday, but they also managed to lose the paperwork at some point. Ah, the NHS at its finest.
The long and the short of it is that I'm pretty well determined to write a letter of complaint to the hospital, finally. I don't enjoy writing letters and I've kind of been putting it off, but I really should do it. As anyone who reads this blog regularly must be aware, I spend a frankly alarming amount of time chasing the hospital up about things they've promised to arrange and then entirely failed or forgotten to deliver - and aside from anything else, even ignoring their track history, it really can't be acceptable that patients' treatment is delayed by a month because a doctor goes on holiday. If I go on holiday from my [insert mystery job here] and something needs to get signed off, my colleagues can sign it off for me after checking my notes. I appreciate that medicine is a rather more high-risk calling than [insert lowly job here] but I refuse to believe that in hospitals across the country no-one gets treatment in August because half the doctors are sunning themselves in the south of France.
Post-hospital (and post-coffee) we trudged back to my house, limping slightly (well, I was limping). Unfortunately, having to go all the way to the hospital for these injections means much more walking immediately afterwards, and my leg is quite sore for a few hours. By the evening though, I was fully recovered and even went dancing, which was excellent!
Thursday, 11 October 2012
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!
____________________________________________________
* 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.
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!
____________________________________________________
* 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.
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