Appointment Time Tombola

Well hello there! Another pause in my updates, but this time a legitimate one - I was on holiday! The lovely boyfriend and I went glamping in Cornwall. We stayed in a yurt, it was pretty epic.

I had an appointment with the endocrinologists last Thursday. That sentence makes it sound so simple - but of course, before I could get to see a doctor I had to first negotiate the administrative no-man's land that encircles my endocrinologists as though they were a small patch of strategically valuable land just south of Ypres. Their administrative systems certainly appear to be about a hundred years old.

On my return from my holiday, I was expecting a letter from the hospital informing me that I had an appointment at the end of July. What I got was a letter from the hospital informing me that I had an appointment at the end of October. As I had just had a full round of blood tests in preparation for the putative end-of-July appointment, this seemed even more stupid than usual.

So, of course, I telephoned them. And discovered that the usual method of getting hold of anyone at the hospital (dial number; doggedly hold onto receiver while it rings 40~ times; hang up and try again later) had been changed to an even more infuriating system, whereby the phone will only ring three times before you are transferred back to an automated message informing you that "This extension does not answer" and requesting that you dial 1 to try again, or 2 to leave a message. After three doses of this eerily robotic speech, I gave up and left a message. Like some kind of naïve idiot.

Obviously I didn't hear back from them, so I called again and again and after dialling 1 so repeatedly that I feared breaking the button, I reached a human. I introduced myself and mentioned that I had left a message. She said "Oh yes, Emer, I have your message right here actually." I said, "Ok, great."

Then there was a long pause.

Eventually she said "So, how can I help you?"

"How about by DEALING WITH THE ISSUE I CLEARLY EXPLAINED IN MY MESSAGE?" was what I did not shout at her, because I am used to this by now and understand that the endocrine admin staff believe that actually responding to messages dilutes the soul.

Anyway, I repeated everything I'd said and she informed me that a number of appointments for July and August had been pushed back to October (no, no-one deigned to explain why), and I could not possibly get another appointment before that date. It took quite a bit of arguing, and pointing out that I was currently taking a medication (hydrocortisone) which was quite possibly medically unnecessary but which I would have to continue to take until I saw an endocrinologist to get the results of my latest synacthen test, to get passed to the booking manager. Then I had to go through it all again but eventually she offered me a cancelled appointment in two days time.

I had intended this post to be about the results of that appointment, but it looks like we'll have to save that joy for another day. I do feel a great sense of post-rant relief however! Phew!

'Flu Jab!

Well, I also heard back from endocrinology yesterday; turns out that they too managed to bugger up my appointments. So the pituitary clinic appointment I was given for the 21st February was cancelled; instead, I'm going in to see the nurses for blood tests on the 28th and am being sent an appointment for early March by post. The lady at the end of the telephone thanked me for calling and alerting them to the fact I hadn't received a "clinical investigations" (what they insist on calling blood tests) appointment, as otherwise they would have booked me in for the 28th anyway and I'd have turned up on the 21st to meet a confused endocrinologist wondering why no blood test results were on the system for me.

Sigh.

So of the three disciplines who are chiefly in charge of my post pituitary surgery aftercare (endocrinology, ENT and neurosurgery), only neurosurgery managed to arrange my appointments without messing it up - although given that they epically messed up my pre-surgery appointments, they don't exactly get any gloating rights as a result.

ANYWAY.

I went to the GPs yesterday to get a new hydrocortisone prescription and get all my info up to date and get my letter signing me off work. The GP was new to me - since joining the new GP's practice last year, I've been pick'n'mixing which doctors I see, I don't really have a regular GP there - and he was very nice. He even suggested I have a 'flu jab - it's kind of late in the season now but it would definitely not be fun to have the 'flu at present. So I did! He warned that I might feel a few 'flu-y symptoms for the next day or two, but actually last night I felt really good. My boyfriend and I made pancakes for pancake day (first course: ham cheese & chive pancakes; second course: oak smoked bacon and maple syrup pancakes; third course: lemon and sugar pancakes), which were delicious. I had more energy than I have had most evenings since my surgery, which was greatly appreciated. Fingers crossed my energy levels start going up from now on!

Phone Calls Galore

Yesterday I went into the hospital to have some blood tests done - sodium levels and thyroid-stimulating hormone levels. I got the results this morning in a phone call from my endocrinologist - speedy service! - and the good news is that they're both normal and, indeed middle-of-the-normal-range. Hurrah!

My endocrinologist suggested that one of the reasons I might still be getting so tired is that my body could be effectively "crashing"; having been used to fairly high levels of thyroid hormone coursing through its veins, suddenly having lower (if more normal levels) might come as a bit of a shock. Having too much thyroid hormone (hyperthyroidism) gives symptoms similar to an excess of adrenaline, all the body's systems speed up - heartbeat, metabolism etc - while having too little thyroid hormone (hypothyroidism) is characterised by more of a "slowing down", with symptoms like fatigue being common. Happily it seems that I'm not hypothyroid, but after having been hyperthyroid for a fair while, my body may still be struggling slightly to adjust to the lower thyroid hormone levels.

I also have been back to my old tricks of chasing the bloody hospital up for appointments. I was expecting an appointment with ENT four weeks post surgery - as today is my four-week anniversary and I'd not heard anything, I called them. Apparently they were "never notified of my discharge" and consequently no appointment was booked. So I won't be seeing them until the 7th March. Endocrinology have booked me in for a clinic appointment to see the doctors, but appear to have neglected to book me in for the various blood tests I'm supposed to have before then; unfortunately they don't like having humans answer their phone, so I've finally had to leave them a message asking what's going on.

Opthalmology have gotten involved now and want to check my eyesight is ok, as pituitary surgery is carried out very close to the optic nerve and there is a risk of damage to the vision, but I've yet to arrange a date with them because, having made all these other phone calls, I am tired. And it's almost lunchtime.

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 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 :)

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

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!"

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.

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

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!

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.

The (Im)Patient Patient

I've always had a problem with the phrase "caught like a rat in a trap". I feel it could be improved upon. Rats are smart. Rats, once caught, sometimes make it out of traps.

But they never make it out of cats.

I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.

Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*

As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.

I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.

If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.


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*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.

Denied

My god! Apparently I haven't published a post since the 31st of August and it's now the 8th September! I am well behind schedule. In fairness, in the past week I have been to a wedding, started a new job and moved house so I feel like I have some kind of excuse for my laxness. On the other hand, excuse schmoose! Shame on me.

I do in fact have an update on my health situation, although not a particularly jolly one. Regular readers will remember that the NHS is proving remarkably loath to pay for the treatment that fixes me. I need regular injections, one every month, which normalise my hormone levels and make me feel much more chirpy, and also possibly stop the tumour growing which would be A Good Thing. They also cost about £750 a pop.

I got the first injection just over a month ago. The hospital then had a month to wrangle who was going to pay for the next one. I was booked in to go back on Wednesday morning for the next injection. Surprise, surprise, on Tuesday afternoon I got a phone call from one of the nurses informing me that they had not sorted out the funding issue and it would be "one or two weeks" before I could have the next one. Past experience would suggest that "one or two weeks" could be anything up to several months.

It's very frustrating, because the injections make such a difference to my symptoms. I massively cut down on the amount of medication I was taking for my heart, to the point where some days I didn't need it at all. I was sleeping better, my nails were better, my eyelashes got thicker (weirdly when my thyroid hormone levels are too high they tend to thin out!), everything was improving. And now I just have to wait, slowly feeling worse and worse all the time.

It's hard not to feel annoyed at my new GP for starting this whole mess by refusing to prescribe it despite letters from the hospital asking her to. I know that she was just playing by the book. But if the tumour in my head goes untreated and keeps growing and makes me more ill it's just more hassle for the NHS in the long run. I really don't care who pays for it. But can SOMEONE please get it sorted?

Acromegaly Community

I am a little overexcited that the piece I wrote recently about Kate Woodward, the girl with acromegaly who sued the NHS, has been posted on the Acromegaly Community blog. It's an excellent website that I have frequently read in the past so I was delighted to hear from them when they asked to post the article! (Thanks, guys). It's definitely highly recommended if you have acromegaly. If you live in the US, it also has some very useful information on financial support for your prescriptions, information on discrimination in the workplace, and medical studies which are currently recruiting.

Plus, if you're passing by you can click 'like' on my post >.>

Girl with Acromegaly Sues NHS

A story broke some time ago about a young lady with acromegaly who sued the NHS, and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!

The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.

Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*

Nice.

Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:

- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.

And, most significantly:

- She wishes to receive all future treatment in the private sector.

Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").

Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.

BUT.

The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.

I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is, according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.

So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that."

 But I doubt it.  And I'm not just saying that because they're bigger than me.***

Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".

Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me for fifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.

 And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.

 But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?).  I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.

I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.

But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you.

I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?

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*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!

** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.

***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.

The Problem WIth Biliary Sludge

Good news at last! The lovely endocrine nurse at the hospital got it sorted and I had my Somatuline Autogel injection this afternoon. Hurrah! They still haven't worked out exactly how my next injection will be funded, but they've got four weeks to do so, and I'm already booked in for the next appointment so I will be turning up expecting it to be very much All Sorted Out by then.

The lanreotide injections do have a bunch of possible side effects, my nurse gave me the list. It is a long list so I just picked a few of my favourites:

- biliary dilatation (don't know what that is but it sounds unpleasant)
- alopecia (because so far my hair just hasn't been falling out enough)
- sinus bradycardia a.k.a. slow heartbeat (YES PLEASE)
- general physical weakness (as compared to my usual muscular state)

I've had these lanreotide injections before, so I know that for me they usually make me nauseous for the first couple of days. Then after that they tend to make me quite prone to bouts of hypoglycaemia so I have to carry around sugary things (usually I'm bad and carry sweets but this time I have invested in some tasty dried fruit). Some people get gallstones and diarrhoea and headaches and all sorts so I guess I am fairly lucky.

I was chatting to my endocrinologist about going back on the injections and he asked if I had any bad side effects so I explained the above and said that the last time I went on the injections I read online that eating an extremely low fat diet for the first few days after having an injection can help reduce side effects, and that since doing so I found I didn't get so nauseated.

I also mentioned how the first time I had them, I was led to expect they would be so awful that it was actually kind of a pleasant surprise just to feel sick for a few days. But obviously they had to tell everyone it might be as bad as the worst case scenario, just in case.

He nodded sagely and said, "Ah yes, the old biliary sludge problem."

I had no idea what he was talking about, although it did occur to me that Biliary Sludge sounds like the name of a character from Dickens.*

Maybe that's just me.

As it goes, it turns out that biliary sludge is the precursor to developing gallstones if you're on this medication, it's like lots of teeny gallstones which build up and slosh around in the pancreas. It's caused by a low turnover of bile in the pancreas (which this medication can cause) and it can be improved by eating a low fat diet. But you're much more at risk if you're overweight or obese, so hopefully I should be fine.

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*He would have many jowls, and a faded red velvet coat, and his whiskers would be full of yesterday's dinner.

Please Sir, Can I Have My Medication?

Regular readers will remember that earlier in the year I was lamenting the fact that my stupid GP's forced me to change GP surgery after I moved a few minutes down the road, due to their weird practice boundaries. At first I thought this was just Massively Inconvenient And Stupid, but in fact it's gone on to have far more serious ramifications.

At present I am thyrotoxic; I have way too much thyroid hormone sloshing around my body, because my pituitary tumour is producing a hormone which is overstimulating my thyroid gland. It has been getting noticeably worse recently; over the past few weeks I have had to up my dose of the beta blockers I take to control my excessively fast heartbeat from 1 - 2 per day to 2 or more frequently 3 per day. I'm noticeably more jittery, I get shaky hands sometimes, I'm getting much more tired more easily. I feel pretty rubbish right now.

The medical universe strongly agree that I need to go on lanreotide injections to stop the tumour producing thyroid stimulating hormone immediately. Like right now. Like actually we should probably have put you back on them at the start of July.

They do not agree on who should pay for it.

My injections are expensive; they cost about £750 a pop (one injection lasts for four weeks, so they cost about £27 a day). My old GP noted that they were more expensive than uranium, but he went on and prescribed them anyway.

My new GP noted that they were more expensive than uranium, and that they are now on our PCT Red List.

The Red List is a list of drugs that should only be prescribed by a specialist, not a general practitioner. It has been suggested that more PCTs are red-listing more drugs to make savings cuts. I could not possibly comment on that. What I do know is that despite the fact that my specialist endocrinologist requested my new GP prescribe them, this is apparently not enough, and after consulting with the PCT (primary care trust) she was unable to do so. The problem is complicated by the fact that the long-acting form of the drug I need (Somatuline Autogel) is not technically licensed for my condition (TSHoma). The older, short-acting form is licensed, but it only lasts ten days, and who wants injections every ten days? Essentially this is just wrangling, but my GP doesn't want to be held responsible for prescribing an unlicensed drug for me, should anything go wrong. She is playing by the book, which is a stance I can sympathise with.

Fortunately the day after I first found out about this issue, I went into the hospital for an appointment and informed my various endocrinologists of the problem. They immediately requested that the specialist nurses order in the first dose of the drug for me so that I could have it administered as soon as possible.

The nurses already have the syringe full of delicious lanreotide. It came in yesterday.

I could have had the injection yesterday. I could have had it today. I could even have it tomorrow, but I don't know if I will - because even though the first dose has been bought and paid for and is SITTING IN A FRIDGE WAITING FOR ME, they are wrangling about who should pay for the next dose.

The next dose.

WHICH I DON'T NEED TO HAVE FOR FOUR WEEKS.

The nurse was super apologetic when I called up to find out what the heck was going on (as I had been told I would probably have it yesterday or today but hadn't heard anything) and she's basically spent the whole afternoon trying to find out if she can just give me the damn injection already and work out where the next one is coming from afterwards.

There is no question that the NHS wants me to have this drug. It's the drug I need, I've had it before, plenty of other patients with my condition have had it before, it works, the licensing issue is really just a wrangle and they reckon the drug company is hoping to get it licensed for TSHoma soon anyway. All the people actually involved in my care want me to have this drug as soon as possible because being this thyrotoxic is Not A Good Thing. But no-one wants to pay for it. Which is ridiculous because it's public damn money. If the hospital pays for it, if my GP's pay for it, it doesn't matter - the net effect on the public purse is exactly the same.*

So please can I just have the damn injection already?

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*Although in fact, it would probably be cheaper to the NHS overall for me to have it administered by a nurse at my GP's practice rather than an expensive and specialist endocrine nurse at the hospital whose time is probably more valuable.**

** And more expensive if my thyroid gland goes into overdrive while I'm hanging around waiting and sends me into a coma.***

***Very unlikely but actually not entirely impossible.

Human Guinea Pig: Part 6 - Resting Energy Expenditure Test

This is the sixth part of the story about my overnight stay in the hospital's research department, having lots of tests to look at the effect my pituitary tumour is having on my body and metabolism. Here are links to: part one, part two, part three, part four and indeed part five.

Resting Energy Expenditure and the GEM Ventilated Hood Indirect Calorimeter

I was woken up at half eight the next morning by the very lovely technician* who did my step test and heart monitor the previous day. She was dragging a large piece of equipment into my room, where it was placed next to my bed; it was time for my resting energy expenditure to be monitored. This has to be done first thing in the morning for maximum accuracy, which is why they kept me in hospital overnight.

 There's a tricky balance to be met with regards to this test; on the one hand, you have to be awake for the whole thing, but equally you're not supposed to get out of bed - or even move, as far as possible. For a sleepy creature like me, this makes it pretty hard to stay awake, but fortunately the whole experience was so surreal that I didn't want to let myself drift off.

Firstly, the equipment is switched on, set up, and left to monitor the room for ten minutes. Essentially, your metabolism is monitored by measuring the amount of carbon dioxide you breathe out. These measurements are then used to calculate your respiratory quotient. The technician explained it to me like this: when you're asleep, you usually breathe out a lower level of carbon dioxide, indicating that your body is metabolising your fat stores to produce energy (RQ = <0.7). When you're out and about, you'll be breathing out a higher level of carbon dioxide, indicating that you're metabolising carbohydrates (RQ= >0.7). I have a pituitary tumour which is messing with my hormones so they want to know what the heck my metabolism is actually doing. Or something.

Anyway - in order to make sure that the readings they take of the air you breathe out is accurate, the composition of the air in the room you're in has to be measured before and after the test. So I lay in bed for ten minutes, listening to it whirring happily next to me.

And then the technician returned with the rest of the equipment.

I am genuinely unspeakably ensorrowed by the fact that I didn't get a picture of me in it, but unfortunately it was early in the morning, my brain was still in first gear, and I wasn't actually allowed to move. So you'll have to use your imagination. Essentially, the rest of the equipment (the "ventilated hood") is a large goldfish bowl with a cape hanging off it, a small hole at the top, and a large pipe or two running out of it. Imagine a giant plastic medical jellyfish and you'll be on the right track.

I did find a picture of the machine all bundled up, but it doesn't look as amusing as it did once it was set up:

This piece of kit is called a GEM (Gas Exchange Measurement) ventilated hood indirect calorimeter. Snappy name, right? The GEM Nutrition website describes it as "an open circuit indirect calorimeter designed for nutritionists needing to measure energy balance and substrate turnover. The compact bedside unit measures gas exchange volumes, respiratory quotient and energy expenditure."

So now you know.

This strange contraption was connected up to the machine, and then placed over my head, at which point I understood why the nurses had double-and-triple checked with me whether or not I had claustrophobia the previous day. Then, safely ensconced in my plastic bubble, the cape was draped around me, and after checking that I wasn't freaking out and providing me with a call button, I was left.

I can't actually remember whether it was for twenty minutes or half an hour, but it didn't feel like very long. I could hear my breathing inside the big clear plastic helmet, which made me feel like a very lazy astronaut. Every now and again someone popped their head around the door to make sure I was ok, but it actually felt quite relaxing. The lights were still off in the room and it was all very chilled. I tried to keep my resting energy expenditure normal.

At some point later, I was freed from my goldfish bowl prison, and the GEM calorimeter sat burbling away in the corner for another ten minutes, measuring the room's air again.

The machine comes complete with a program which shows you the results immediately, along with little graphs showing the levels of carbon dioxide you were breathing out vs. the oxygen you were breathing in, etc. This would have been pretty awesome if I had had any clue what the results meant, but sadly they have to play with them further before they can draw any actual conclusions.

My Experience of the GEM Ventilated Hood Indirect Calorimeter:

Hassle: 1/5 (all I had to do was wake up and keep breathing, which I've managed to do every day of my life so far)

Fun: 3/5

Weirdness: 5/5

Results: 3/5

Total score: 12/20

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*I don't know what her official job title is, so I'm going with "technician" but I could well be extremely wrong; I just know she was neither a doctor nor a nurse.

The Very Scary Case of Kane Gorny

Before going into hospital last Tuesday, I stopped off at one of my favourite cafes for a hot chocolate, as a pre-hospital treat. I wasn't allowed caffeine in the three days before going in, so I had been suffering from a woeful lack of hot drinks. I got my hot chocolate (which was delicious) and sat down by the pile of daily papers they keep at the café. Alas, all the more upmarket titles had been taken, so I had to settle for that peculiar bastion of journalistic achievement: the Daily Mail.

You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.

You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.

I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:

What was wrong with him?

 Kane Gorny suffered from a pituitary tumour; that much is certain. The exact details of Mr Gorny's condition are still somewhat sketchy and vary depending on which paper you read, but I'm going to guess that he possibly had acromegaly or Cushing's Disease, from the statement of his endocrinologist that he had a "rare tumour", and the fact that he had joint problems.

Most papers have reported that he had a "malignant" brain tumour or "brain cancer". The tumour may well have been cancerous, but it should perhaps be noted that this extremely rare for pituitary tumours; they are sometimes misreported as malignant due to journalists misunderstanding the condition and the fact that a tumour labelled "benign" may still be very harmful. In any case, I'll be looking at the definition of malignancy/cancer with regard to pituitary tumours in a future post, hopefully within the next couple of weeks, because it's an interesting question.

Why did he need a hip replacement aged just 22?

After pituitary surgery, sometimes the healthy pituitary gland is damaged, leaving it unable to produce certain hormones, including ACTH (adrenocorticotrophic hormone), which stimulates the adrenal glands to produce the steroid hormone cortisol. Without cortisol in the body, you can die quite quickly - consequently, it is standard to give patients steroid pills after surgery until doctors are certain their pituitary gland is able to produce ACTH. If the pituitary gland has been damaged, patients will need to take these pills for life.

Most reports have stated that Mr Gorny's steroid treatment left him requiring a hip replacement; high levels of steroids in the body can lead to avascular necrosis (although not in "a couple of weeks" as one paper initially reported). Additionally, if he did indeed have Cushing's or acromegaly, both of these conditions can adversely affect joints.

How did he die of dehydration so quickly?

A healthy human can live for a couple of days without water, depending on exertion and environmental conditions. Kane Gorny could not. After his pituitary surgery, Mr Gorny was left with diabetes insipidus. This is a very different condition from what we refer to as "diabetes" (diabetes mellitus) and is caused by a deficiency in anti-diuretic hormone (ADH, or vasopressin). Anti-diuretic hormone is secreted by the pituitary gland and helps to control the body's fluid balance. In diabetes insipidus, the lack of this hormone means that the body cannot conserve much of the water which it takes in, and consequently the sufferer becomes extremely thirsty and needs to urinate frequently. Unfortunately, developing this condition is a fairly common side-effect of pituitary surgery and pituitary radiotherapy.

In order to treat his diabetes insipidus, Kane Gorny would have needed to take a drug called Desmopressin (DDAVP), which is a synthetic substitute for vasopressin. As long as he was taking this drug, his body would be able to retain a normal amount of the water he drank, and he would not become dehydrated. When the drug was witheld, his body could not remain hydrated, and he died.

How could the hospital get this so wrong?

Unfortunately this is the question that can't be answered. Kane Gorny's death appears to have been preceeded by a number of absolutely catastrophic blunders at the hospital. His endocrinologists were not informed that he was in the hospital for surgery; his surgeon was entirely unaware of his condition; nurses did not read his notes; no-one listened to his mother's concerns; the list goes on.

Diabetes insipidus is a common problem among pituitary patients, but far more rare in the general population. Endocrine and neurosurgery nurses would likely be familiar with the condition, the importance of the medication Mr Gorny was taking, and the crucial need to monitor his fluid balance. The nurses actually looking after him knew almost nothing about it.

It's a sad fact that there are a hell of a lot of medical conditions in the world. Patients with diabetes insipidus or the inability to produce steroid hormones are encouraged to wear MedicAlert jewellery to alert paramedics and medical staff to their conditions in case of emergency, yet it seems even when medical staff have access to full notes on a patient they can go unheeded. 

Sometimes it gets frustrating when you're in hospital or go to the doctors and are asked for the thousandth time to explain what's wrong with you. In the future I'll try to be more grateful that someone is checking...

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Kane Gorny's brother is fundraising for CLIC Sargent. You can donate here.

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!

My Transsphenoidal Pituitary Surgery: Part 1

And so, the day of my pituitary surgery dawned!

Or rather, it didn't. It was still dark when I got up that morning; I had to report to the hospital at 7am and I needed to get up early enough to allow time for paranoid checking and re-checking of my bag. Thank god for the internet - I packed in a rush the night before, but all I had to do was Google "what to pack for hospital" and I was supplied with numerous checklists that helped ensure I did not forget my toothbrush.

I reported in, accompanied by my mum and dad, and was duly supplied with my attractive compression stockings and various leaflets. I was assigned a waiting bed in the neuro day ward, and another lady who was having the same surgery was there as well. One of the nurses ran through the pre-operative assessment form again and I was swabbed for MRSA - apparently if you come up positive they don't cancel your operation but you do get moved to the end of the queue for that day, in case you end up contaminating the patients after you.

It was at this point that I started meeting anaesthetists. A woman walked into the room and introduced herself as my anaesthetist, asked me some questions, and let me ask her any questions I had. Shortly after she left, a man walked into the room, introduced himself as my anaesthetist, seemed surprised when I said I had already met someone claiming to be my anaesthetist, asked if I had any questions, and then left. These two certainly looked and dressed like anaesthetists, but I have to say that the third man to introduce himself as my anaesthetist was the most convincing, as he was sticking a needle into my arm at the time.

There was a lot of sitting around informing people that I wasn't pregnant that morning, plus the signing of various consent forms allowing them to keep slices of tumour for research purposes and promising them not to haunt them if I died. As hospitals are really an ideal setting for poltergeist activity, I for one felt this was pretty harsh.

At some point a nurse asked me to get changed into one of their haute couture hospital gowns, so I did. The lady in the next bed was wheeled off to her surgery. Somewhat later, two young men arrived and announced they had come to take me for a CT scan of my pituitary.* No-one had told me that I was going to have a scan, so this was something of a surprise.

The porters went out to confer with the nurses. There was a considerable amount of to-ing and fro-ing, mind-changing, phonecalls and confusion, but eventually it was decided that yes, I was indeed due to have a CT scan before the surgery. I was told it could take up to an hour, so I cheerily waved my parents goodbye and was wheeled away in my bed by the porters, whose social lives I learned quite a lot about on the way to the distant CT scanner.

I was taken into the scanning waiting room, in the bowels of the hospital, and my bed was parked up. It was not a cheery place; everyone else in there was really not well. I felt strangely fraudulent, sitting up in my wheely bed like a perfectly healthy person, waiting.

And waiting.

There was a bit of a backlog at the scanner, as per usual. I have no idea how long I had been waiting, when all of a sudden, Mr Pout (one of my surgeons - I wrote about him in this post) appeared by the side of my bed, all scrubbed up and out of breath.

"Miss Grey, we've been looking for you!" he cried, in what I felt was an unreasonably reproachful manner given that I had quite clearly not wheeled myself down there. "Everyone's waiting for you in theatre right now!"

Of all the WTF moments that the hospital has given me in our association, that was certainly the strangest to date. Mr Pout grabbed the bed and attempted to wheel me to the operating theatre; not an easy task, plus it was quite a long way away. Hospital beds are like larger, more dangerous supermarket trolleys and require two people for optimum maneouverability. Fortunately we (quite literally) bumped into one of Mr Pout's colleagues along the way, and she lent a hand wheeling me into a lift.

Along the way, Mr Pout breathlessly explained that they had originally been intending to do my pituitary surgery with teeny instruments and the aid of an ENT team (Ear, Norse & Throat; Treebeard doesn't do transsphenoidal surgery), due to my "narrow nasal passages".** In order for this to happen, the ENT people neeed a CT scan. However, when my surgery had been cancelled, they had cancelled the ENT team and had been unable to un-cancel them; consequently they would be doing the surgery the normal way, assuming the instruments would fit up my nose. There was a slight risk, Mr Pout informed me, that they would not.

At this point, Mr Hamstercheeks, the head surgeon appeared. I had never met him before. "

I was just explaining that the surgery might not be able to go ahead if her nose is too small," said Mr Pout.

Mr Hamstercheeks looked at my nose. "No, it'll be fine," he said.

HARSH.

"Can someone please make sure that my parents know I've gone into surgery?" I asked. A nurse asked for their details, picked a phone off the wall and dialled the ward where I had been to request that my parents were told. As I found out later however, somehow the receptionist on the ward managed to get epically confused and my parents were never told, despite asking where I was. They weren't bothered though, they went into town for lunch.

At this point I was still wearing my glasses, hairband, and slippers, which I had to take off; I was super nervous, but in a way the complete muddle over my surgery was kind of good - because it meant I was laughing as they wheeled me into the prep room. I met the third anaesthetist and various people starting sticking needles in my arms. It turns out the third anaesthetist used to live in the same road as me, so we got chatting about the local takeaways. At one point I thought I should just lie back and relax, let the various medical professionals do their thing - but then I suddenly became deeply paranoid that they'd think I was asleep when I wasn't (stupid I know) so I decided to keep talking as long as I was awake.

As this is what I usually do anyway, it was not a problem.

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*Possibly I should note that they were hospital porters, not kidnappers.

**If you haven't worked it out, transsphenoidal pituitary surgery involves sticking surgical instruments up your nose and drilling through the back of it to gain access to the inside of your skull.

Further Phonecall Funtimes With The Hospital

Another hilarious hospital moment: so on Friday I was heading to London for a friend's wedding (congratulations Mrs X!). The wedding wasn't until four, but I was doing the bride's hair and makeup and consequently heading down there nice and early. I felt almost certain that the hospital would attempt to phone me during the ceremony, because their phone call timing is always so hilariously dire. I am happy to report that they did not! Hurrah! Instead they called me just as I was trying to get onto a train, juggling three bags, one of which had to be kept upright at all times, and a cup of hot coffee.

Anyway, I made it to a seat without dropping the phone or spilling hot coffee all over my dress, and very proud I was too. The best part of the phone call was the beginning, which went like this:

ME: Hello?
ENDOCRINOLOGIST: Hiya, is this an OK time to talk?
ME: Yes, now is fine! (I am quite the liar)
ENDOCRINOLOGIST: SO I was just calling to let you know that I've confirmed the date for you to come in for your overnight testing on the 3rd to the 4th July-
ME: I'm sorry, did you say the 3rd to the 4th?
ENDOCRINOLOGIST: Yes, the 3rd to the 4th July, as we agreed on Monday?
ME: On Monday you told me it would be the 2nd to the 3rd...
ENDOCRINOLOGIST: Oh, did I? Sorry, it's actually the 3rd to the 4th. I'm always doing things like that, haha!

FACEPALM

Fortunately I could do the 3rd-4th as well, although I had to cancel plans to have dinner with a couple of my friends on the evening of the 3rd (sorry guys!). But I have to admit I was slightly taken aback at the fact that the endocrinologist didn't even inquire whether the new date suited me, despite the fact I would obviously have to re-clear it with work etc. She just assumed there would be no problems.

Perhaps at this point I should reiterate the fact that the hospital I'm treated at is in the main very good, with regards to treatment, explaining things, liaising across different departments, making sure I'm seen by multiple members of the endocrinology team etc. The nurses there are absolutely lovely, and when I had my surgery they really did look after me well. It's only in the administrative context that they fall down so abysmally, and I guess if it's a choice between a hospital providing very good treatment but being rubbish at arranging appointments, or vice versa, we all know which we'd prefer.

But anyway. The long and the short of it is that I will be going into hospital next Tuesday afternoon and staying in til around four o'clock on Wednesday. They've managed to arrange it so I will have my first PET scan on Wednesday so I won't have to come in again on a different day, which is good news. As for precisely what tests they are going to do, they've been kind of vague on the details but have said they'll send me leaflets on them; it's going to include a further pituitary MRI, some kind of body composition scan (I am now slightly afraid they'll tell me I'm composed of 90% fat), along with another bone density scan I think, and what I believe is technically referred to as a "shitload" of bloodtests.

I'm supposed to come off the beta blockers from the 31st and not take them at all until after my last set of blood tests on the 4th, which is going to SUCK. I have to travel through London on the 31st and I am really not looking forward to it now. I'm frequently finding I have a resting heartrate of about 120bpm at the moment and I've had to double my daily dose of beta blockers compared to what I was taking when I was on the lanreotide. Erk. I have expressed my annoyance on here previously at the fact that doctors really don't understand how rubbish tachycardia can make you feel; it just makes absolutely everything feel like really hard work. I'm also slightly suspicious that when I get there they might try and make me run on a treadmill or something (someone I work with had metabolic testing at the same hospital in the same facility and that's what they made her do) which without beta blockers would beeven less fun than usual!

So I'm going to try to remember to take my camera along with me to the hospital and take some pictures while I'm there, if they'll let me! Other people with medical type blogs always post pictures of their scans or having tests done or whatever and I never do, so I am determined to have a bash at it. If worst comes to worst I shall at least endeavour to get some exciting shots of my hospital bed...