Happy National Recovering From Brain Surgery Day!

It's a tricky in-between sort of day today, sandwiched between Pancake Day (yay!) and Valentines Day (yay!). Technically it's Ash Wednesday, the first day of Lent, but that just means you can't do anything fun. And I can't do anything fun anyway (that is actually a lie, I have watched a lot of TV and read a lot of awesome books while recovering). So, I decided: I have co-opted February 13th to be National Recovering From Brain Surgery Day! Hurrah!

Are you recovering from brain surgery? No? Then you should find someone who is and shower them in affection and expensive gifts. Then you should probably leave them for a couple of hours so they can have a nap. But then you can come back and give them more gifts! Because that is the meaning of National Recovering From Brain Surgery Day. Hurrah!

This adorable hedgehog is wearing a hat to celebrate February 13th, as science has proven that people recovering from brain surgery enjoy pictures of cute animals wearing hats.

If you are recovering from brain surgery, then celebrate National Recovering From Brain Surgery Day by demanding attention and love from all those around you. But don't strain yourself. Hey, maybe you should take a nap. Hurrah!

Now for the awareness part: Brain tumours are more common than you might think, especially amongst younger people. Brain and central nervous system tumours are the second most common group of cancers in children in the UK, and they kill more children  and people under the age of 40 than any other type of cancer. Yet brain tumour research receives comparatively little funding; just 1.4% of government spend on cancer research related to brain tumour research in 2011, although the proportion spent on brain tumour research has been rising since 2002.

So! Today be nice to someone who's had brain surgery (whether it was for a tumour or epilepsy or head trauma, or just out of sheer curiosity). If you're feeling generous you could even make a donation to a charity like The Brain Tumour Charity, or get involved with fundraising. But one of the most important things you can do for yourself and your family is just to be aware of the possible symptoms of brain tumours.

Have a lovely February 13th!

Back Home

I moved back to my house on Sunday! I'd been staying with my parents after being discharged from hospital post-surgery, because I was basically super pathetic and really needed someone to be around all the time at first. Now I'm able to make myself a cup of tea and some lunch, and walk a reasonable distance, I judged myself able to head home. One of my housemates works from home and is therefore in most of the time, so there'll still usually be someone around to keep an eye on me, which is nice (for me; she may have her own views on the matter...)

Moving back was quite a busy day - my parents live over an hour's drive away and I had to pack everything up ready to head home. I'm definitely not allowed to do any heavy lifting, so the actual fetch-and-carry part of the process had to be left to other people, chiefly my mum and dad (sorry!). We got back, I had a little rest and unpacked my clothes (some of the other stuff is still in bags - I'm progressing, just slowly), and then walked to a nearby pub for a drink. My walking is quite entertaining - I can walk for half an hour or so at a time quite happily now, but what happens is that I start off at something approaching a normal pace and then get slower and slower over time, like a clockwork girl who's losing power. Consequently half an hour's worth of walking does not cover what I would normally consider to be half an hour's worth of ground.

So I'm doing pretty good really - made it into town and back yesterday, although I had to stop for a lengthy coffee break once I got there, and when I got home I curled up in my room and just read for a couple of hours, I definitely felt tired.

I've only had one appointment through from the hospital so far, so I suspect I'm going to have to chase the rest up, joy of joys! I was told I would see the ENT surgeon at four weeks after the surgery (for another camera-up-nose session, alas), have blood tests done at six weeks, see the pituitary clinic at eight weeks, have an MRI at eight weeks and then see the neurosurgeon a couple of weeks after that. So my schedule will shortly be full of treats!

Back on the ward

Once I woke up after my endoscopic transsphenoidal pituitary adenoma resection surgery (that's what they called it on the forms!) I had half an hour or so in the post-surgical recovery area to rehydrate and have regular neurological checks. I had these throughout my time in hospital, with decreasing regularity. They ask you where you are, what year it is etc (it usually takes me until at least February to readjust to a new year so I had to concentrate for that one), then there are physical tests; squeezing hands, pulling and pushing with your hands and feet etc. to check that nothing weird's going on in your head.

The last time I had pituitary surgery, I was pretty perky afterwards, probably because I had a whole bunch of morphine when I woke up. This time however, my head barely hurt when I woke up, so no morphine, so I was rather more subdued... Which I think everyone else was probably thankful for. I was taken onto the ward and my parents arrived not long after. A nurse brought me a yoghurt to eat and then a tuna sandwich - I only managed about a quarter of it, but it was really nice to have some food, and when the tea trolley came around I was practically in heaven.

At first I had to have observations taken every half an hour for the first six hours, then once an hour for six hours, then every two hours, and so on. Observations involved measuring blood pressure, blood oxygen levels, heart rate, breathing rate, pupil response to having bright light shone in them (usual response: argh, get that light out of my face), and the aforementioned neurological tests.

I was really not in much pain at all, I had some paracetemol and that was all I needed with regards to painkillers - I was up and walking to the loo within two hours of waking up, so I did pretty well I think. They start you on hydrocortisone, a steroid medication, immediately after surgery (via IV drip initially) because there's always a risk that your body will stop producing steroid hormone after the operation, which may be temporary or permanent.

The most exciting thing to happen was a ninja nosebleed, which suddenly appeared from out of the blue. A nurse ran up to the neurosurgical theatres to grab a selection of bandages wrapped up in bandages, to tie around my face like an attractive surgical moustache and catch any unexpected oozing.

Sick Note

It turns out that the procedures for getting signed off sick from work in the UK have changed since the last time I had pituitary surgery. I didn't know this, and nor did most of the doctors, nurses, surgeons and assorted healthcare workers at the hospital, but apparently that these days the hospital can only sign you off sick for the period you were actually in the hospital. Your GP has to certify you for the rest of the time. Seems a bit random given that the consultants at the hospital probably have a much better idea of how much time off you need, but nevermind.

Anyway, this has resulted in me receiving from my surgeon a little certificate entitling me to a grand total of three days off work. Reason given: brain surgery.

Anaesthetime

Going Under

So I was wheeled into the little anteroom by the operating theatre; the connecting doors were open so I could see into the main theatre room, which was a bit weird. The first thing they do (reassuringly) is to check you're the right person, both by asking you and by checking the ID tags on your wrist and ankle. Then it becomes a bit of a flurry of activity really; you have to untie the hospital gown so it's basically just an extra blanket, make sure your glasses are labelled before they take them off, etc etc. The various anaesthetists and nurses and assistants are really lovely; both times I've had a general anaesthetic, they've done a stellar job of distracting me and keeping me feeling pretty calm about the whole thing.

I had a mask with some oxygen flowing to breathe while they put a cannula in my left wrist. The anaesthetist warned that I might feel a little sting as the anaesthetic was administered, but it was actually surprisingly painful as it moved up my arm. Upon waking up I discovered that at some point the vein had blown, they'd taken that cannula out and put one in my right wrist instead, so I don't know if that would explain why it hurt more than I expected. Equally possible I guess is that it always hurts like that but most people forget once they've been knocked out?

Incidentally, common misconception about cannulae; they're little flexible plastic tubes that sit inside the vein, they don't have needles in - the needle is just used to insert it and is then removed.

Waking Up

I woke up gradually and was fully awake by about half-past twelve; there was a clock opposite my bed. Immediately I took this to be a good sign, as I knew I'd had the general anaesthetic about nine. Given that it would have taken some time to get me into and out of the theatre, that vaguely indicated an operating time of around three hours, which implied there probably hadn't been much in the way of complications like, say, a cerebrospinal fluid leak. Lack of complications is good.

The first thing I noticed, of course, was pain: I didn't have much of it. The second thing I noticed was: there were no bandages in my nose! Last time I had transsphenoidal surgery, my nose was packed with rolls of wadding afterwards, and having it taken out was a pretty unpleasant experience. This time? Nothing. My nose was a little delicate, but it was bandage free and, remarkably, not even oozing at that point. A lovely nurse explained they had filled the wound with a kind of foam, which sets hard and then dissolves slowly. Occassionally over the next few days I would feel it creaking slightly in my head and sinuses, which was an extremely weird sensation but happily caused no actual pain.

As expected, I was really thirsty and my throat was sore from the tube they put down it. The very nice nurse came and asked me my name and where I was, and brought me a cup of water. With a straw. On reflection, maybe I should have remembered that you're not supposed to drink through straws after pituitary surgery, and in hindsight the three cups of water I proceded to drink using said straw may have contributed to the epic nosebleed I experienced some time later once I got back onto the ward. But it's hard to think straight when you've only just woken up...

Preparing for Pituitary Surgery

?Aloha! Had a good day today and yesterday. I have managed a gentle potter around the village and a hot chocolate at the local pub with my dad and auntie, which was really nice although it left me totally shattered.

I thought I'd try to keep things in vaguely chronological order and write a bit about preparing for my pituitary surgery. Of course, as discussed previously I'd been doing my MRSA eradication protocol, and I'd packed my bags ready to go in. Super diligent readers may recall that I once published a list of my top tips for people about to have pituitary surgery; number one on the list was  "shave your inside elbows". This is because of the sheer number of blood tests you have after surgery - the tape they put over your elbows is put on and pulled off  until it feels like you're being given an extremely incompetent and lengthy elbow waxing.

Instead of shaving, however, I went one step better and bought some hair removal cream, slapped it on the night before and boom! hair free inside elbows without that stubbly regrowth you get from shaving. By the time I left hospital, despite all the blood tests my arms were so much less painful than last time I had pituitary surgery - highly recommended!

On the morning of my surgery, I got up early - I had to arrive at the hospital at seven am - and took off my nail polish - with regret, because it was awesome.  "But why are you not allowed to have nail polish on during surgery?" I hear you cry? Because a) nail beds changing colour during surgery is a warning sign of Something Wrong, and b) some (but not all!) colours of nail polish may interfere with the machine they use to measure blood oxygen and heart rate (a pulse oximeter), which clips on to a fingertip and works by essentially shining light all the way through your finger.

No matter how awesome, it has to go!

I was quite nervous as we left and drove to the hospital. We were sent to wait in the neurosurgery day room, which was pretty rammed with impatient inpatients. I was the first one to be called through to a ward, given my own bed area, had my bags tagged with my name and hospital number etc. Highly attractive lime-green-and-white compression socks were issued to me, and my legs duly squeezed into them; then came the sexy hospital gown. My hospital is good for having gowns which actually wrap the whole way around and don't leave your arse hanging out the back (technical medical term there), but unfortunately actually tying the tags up is like a complex macrame manouvre.

Next came the doctor parade. I arrived at the hospital at 7am; I was due to be wheeled out to the theatre for my pituitary surgery at a quarter past eight. In that time, I was due to be seen by a neurosurgeon, an anaesthetist, an endocrinologist, another different endocrinologist, and a nurse to run me through giving consent. Plus I had to change into the aforementioned garments and get my hospital and allergy tags.

It might have been fine, but I didn't get seen through to the ward until twenty past, meaning that there was less than an hour to see five different people and change. Unsurprisingly, I ended up late. Most of them were coming to have a quick chat and check that I understood the procedure, so they didn't take too long, but there's no clear timing for each of them, so there were times when two people arrived at the same time and one of them had to leave, and times when I was sitting around kicking my heels with no one there. The additional endocrinologist had requested my permission to keep part of my pituitary tumour after the surgery for research purposes. TSHomas (pituitary adenomas which produce thyroid-stimulating hormone) are extremely rare, so I was happy to consent - but it takes some time to run you through the yays and nays and signatures and things. To be honest, I think it was a little silly that they left it right until the last minute to ask me to take part in the research; they could have gained my consent at any one of my numerous pre-surgery hospital trips.

And the nurse had to take me through a relatively long questionnaire. Because it's neurosurgery, they have to be very careful about whether or not you may have any increased risk of variant Creutzfeldt-Jakob Disease (which you may know as mad cow disease). The prions which are believed to cause this illness are extremely difficult to deactivate, and are potentially transmissible on surgical equipment, so they have to check whether you have any increased risk of vCJD.

Consequently, it was a quarter to nine before I was wheeled out of the ward and off to the operating theatre. The ward nurses were stressed because I was half an hour late and they'd been getting angry phone calls from everyone waiting in the theatre. I said a quick goodbye to my parents. It was pretty nerve-wracking, and also strange because I'd never been through that part before - last time I had surgery I was wheeled off "for a CT scan", and then my surgeon dashed into the scanner waiting room, announced I was supposed to be in surgery, and wheeled me off. The porter who wheeled me off regaled me with tales of his childrens' teenage pregnancies. There was a brief moment of difficulty as they struggled to fit my bed into the lift - apparently I was in an extra large bed usually used by pregnant women and morbidly obese patients: cheers, hospital - and I was off...

MRSA Eradication Protocol a.k.a Massive Hassle

So before having my pituitary surgery, I went for a pre-operative assessment at the hospital, which mainly involves blood tests, sitting around in waiting rooms, and being asked lots of questions by nurses. It also involves being swabbed for MRSA.

MRSA stands for methicillin-resistant Staphylococcus aureus, which basically is any form of the Staphylococcus aureus bacteria which has evolved resistance to standard antibiotics. It's no more virulent than your standard S. aureus bacteria, just harder to treat - and many people carry it around on their skin or in their nose or throat without suffering any adverse effects.Unsurprisingly, it's very bad news in hospitals; if it infects open wounds it can cause potentially fatal blood poisoning or endocarditis. So, before you're admitted to hospital they swab you to find out if you're carrying MRSA.

So far, so standard; that all happened last time I had pituitary surgery. The difference was that this time, about twenty minutes after I'd done the swabs, a nurse dashed into the room where I was chatting to the surgeon, handed me a bottle and a piece of paper, and dashed out. Upon closer examination, it was a bottle of octenisan, which is an antimicrobial body wash used to eradicate MRSA . No-one seemed clear on whether or not I actually had MRSA on my skin or not - it was only when I got into the hospital for surgery a week later that I found out I had been MRSA negative. It seems all the neurosurgery patients had been given the body wash, as a precautionary measure.

And my god, was it a hassle. It would probably be fine for lots of people, but I own precisely two towels and two sets of bed linen, and the "eradication protocol" requires not only that you use the body wash every day, but that all linen, clothes, towels etc. are freshly laundered too. This meant a hell of a lot of laundry every time I got home in the evening; on top of which, you have to leave the body wash on your skin for at least a minute, which required quite a lot of bravery in our icy cold bathroom.

Obviously I'd much rather go through all the hassle than end up infected by MRSA, or give it to anyone else - but my word it has made me resolve to buy some more towels...

Post surgery update

It's coming up on a week now since my pituitary surgery last Tuesday morning. This time last week, I went out to a meal with my boyfriend and parents, then headed home for some last-minute packing.

I seem to be doing pretty well so far (touch wood). Yesterday was fun, my boyfriend's parents came to visit which was really lovely, and I even made it outside in the snow very briefly. Normally, I am a keen maker of snowcreatures (my best effort to date being a snow walrus) so it has been very sad for me to not be able to take advantage of the weather.

Today is the first day I've not had an afternoon nap, though I'm mostly still alternating between lying on my bed and lying on the sofa downstairs. I think compared to last time I had surgery I feel a bit more awake mentally, but physically I'm still super pathetic. My brain is quite happy typing this all up, but my body is protesting that it would be so much easier to just lie down. Except then I get super bored.

In terms of medication, I'm taking hydrocortisone - that's standard after pituitary surgery as there's always a risk that the pituitary gland will stop producing adrenocorticotropic hormone after surgery, which could be quite serious. I have a nose spray and also (prepare for grossness) I have to rinse out my sinuses three times a day. It basically involves putting a bottle full of saline solution against one nostril and gently squeezing; the water then goes up one nostril and out the other. It is a very disconcerting sensation but it's actually really good. Last time I had pituitary surgery, no-one suggested this, but because I had endoscopic transsphenoidal surgery this time, an Ear Nose and Throat surgeon worked alongside my neurosurgeon, and he has instructed the sinus rinsing. The result is that I can breathe through my nose less than a week after surgery, which is a huge improvement on last time.

I've had my second pituitary surgery!

Aloha! I'm typing to you from the sofa in the front room of my parents house, on my beloved laptop Larry (who, incidentally, I received as an early birthday present the last time I had pituitary surgery).

I had my second transsphenoidal pituitary surgery on Tuesday morning. Happily, I was first on the list for surgery that day, so I rocked up at the hospital at 7am, was having anaesthetic administered at ten to nine, and woke up in the recovery room at half twelve.

Although I was told that I would be in hospital for a minimum of 4 - 7 days after surgery, I actually managed to get released a day early, on Thursday, which was a bit of a surprise for all concerned really. The endocrinologists were happy to give me the all-clear to leave early, in part because it's a long car journey to my parents house from the hospital and heavy snow was forecast for Friday.

I will have to write about my pituitary surgery experience in dribs and drabs, I'm afraid, I'm not quite up to typing the full story in one go at the moment. Essentially the surgery went well; there's a slightly higher risk of complications such as cerebrospinal fluid leak after your second surgery, but so far (touch wood!) I seem to be doing ok. The neurosurgeons seem very happy with how the operation went; it was endoscopic transsphenoidal surgery this time, which gives a much better view of the surgical site, and the surgeons seem confident that they managed to remove the pituitary tumour whilst leaving the pituitary gland itself intact. They also said that the lanreotide injections I've been on for the last couple of months seem to have had a noticeable effect on the tumour, shrinking and partially liquefying it, which made the surgery easier.

Anyway, that's more than enough typing for my tired head. Ciao!

Ear, Nose, and Throat

When I got my appointment to see the ENT people, I learned a new word. Not panjandrum (although that is another new word I learned recently and haven't had the chance to trot out yet) or fissiparous (likewise), but otolaryngology. Which, it turns out, is the proper name for Ear, Nose & Throat. I had always vaguely wondered why other medical departments got to use such fancy names - cardiac for heart, renal for kidney etc - while the poor Ear, Nose and Throat people were stuck with a name that sounds like an extended edition of the popular children's song "Heads,Shoulders, Knees and Toes". Turns out they do have a fancy name after all. Who knew?

So I went to see the otolaryngologist. I went into his office and he asked about the problems I've had with my nose and sinuses since my first operation - I still use a nose spray twice a day because otherwise it's too painful. He was very nice, right up to the point where he announced he was going to put a camera stick up my nose.*

Firstly I had to have a topical anaesthetic, which was administered as a nose spray. It went right down my nose and numbed the back of my tongue as well, which not only felt incredibly strange but tasted revolting. Then after giving it a few minutes for the anaesthetic to work, out came the camera stick which was slowly fed into my left nostril. It wasn't too bad at first, although it was incredibly freaky to see quite a long stick disappearing into my head. I felt like one of those "human blockhead" circus sideshow acts where they hammer nails into their nose, except it was uncomfortable enough even with topical anaesthetic that I can't imagine volunteering to do it without one.

Then once the camera was at the back of my nose, the otolaryngologist started poking around more, and that was genuinely painful; it was quite hard to keep my head still and my eyes were watering. Then of course, he had to do the other nostril.

The good news was that there's nothing much wrong with my nose, although part of one of the structures inside (I cannot for the life of me remember what he called it, and Google has been no help) has ended up knocked sideways, probably from the surgery. I just have to keep using the nose spray I already take, indefinitely. It may eventually clear up, or it may not.

Then after the pituitary surgery, I'll go in to have a check up with ENT once I've healed up. After the operation I have to use a nasal wash, which sounds pretty gross - basically it involves putting saline solution up one nostril from a little pot and rinsing it around inside your nose. Eurgh. I have heard of this before, I believe it's quite common in India and Pakistan and that part of the world - I believe in Pakistan recently there was an outbreak of cases of naegleria fowleri, a particularly nasty brain-eating amoeba (no, I'm not making this up) as a result of people using water that hadn't been boiled to wash out their noses.

So the moral of the story is: boil the damn water.

Ahem.

Anyway, then I returned home to regale my housemates and boyfriend with the story in glorious technicolour detail, by which time thankfully the anaesthetic had mostly worn off and my face was starting to feel a lot more normal again.

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* N.B. In fairness, "camera stick" is not the term he used.

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.

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.

Return of the Living Head

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

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

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

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

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

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


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

IMFW: Harvey Cushing

This week's IMFW is really more like an IMPW - an Interesting Medical Person of the Week. Harvey Williams Cushing is often regarded as the "father of modern neurosurgery".

An American descended from a long line of doctors, he was born in Ohio in 1869. After studying medicine, he went on to study surgery at the famous Johns Hopkins Hospital just after it had opened, then spent time in Europe before returning to Johns Hopkins as an associate professor in surgery. As well as writing about medicine, he was a talented medical illustrator and several of his drawings were published in textbooks - and as if that wasn't enough, he received the Pulitzer Prize for Biography for his biography of his mentor, William Osler.

Cushing's first monograph was on the subject of the pituitary, and on this blog, you'll have heard Cushing's name from one of his most famous discoveries, the disease named after him - Cushing's Disease; a tumour of the pituitary gland which secretes ACTH (adrenocorticotrophic hormone) and causes a range of symptoms including weight gain, bruising, sweating, high blood pressure and diabetes. Being a modest chap, he had originally named it "polyglandular syndrome", but his name stuck. However, this was far from his only contribution to medicine:

- He introduced blood pressure measurement to America

- He used x-rays to diagnose brain tumours

- He developed medical instruments which are still in use today, including the Cushing Forcep which is used during cranial surgery, the Cushing clip - a small clip for blood vessels to stop bleeding during surgery, which dramatically decreased mortality rates - and the use of electrocautery which he developed with W.T. Bovie, a physicist

- Along with a colleague, Ernest Codman, Cushing devised the first anaesthetic chart to help surgeons and anaesthetists monitor pulse, temperature and breathing - an innovation which was widely adoped

- Cushing pioneered many new surgical techniques including the use of saline for irrigation during surgery

- He developed a surgical cure for trigeminal neuralgia

- His mortality rate was around 10% - which doesn't sound hugely impressive until you realise that before he came along, mortality rates from neurosurgery were 50 - 90% depending on which source you believe

- He developed the transsphenoidal approach for surgery of the pituitary gland

- He invented the macarena (just checking you're paying attention...)

- He identified and named the phenomena of hypopituitarism and hyperpituitarism


Yes... yes, that is a skull.

 So Mr Harvey Williams Cushing deserves our gratitude and respect. He has thoroughly earned the bewildering array of unpleasant medical things named after him, which include: Cushing's Syndrome, Cushing's Disease, Cushing's symphalangism (a.k.a. proximal symphalangism), Cushing's Reflex resulting in Cushing's Triad (a nervous system response to increase intracranial pressure), Cushing ulcer a.k.a. Rokitansky-Cushing Syndrome, Bailey-Cushing Syndrome (he had to share that one), the Cushing forcep and Cushing clip.

Getting Aggressive

Last Thursday was my latest trip to hospital. My mum came with me, which was nice - she often tries to make it over for the more "important" hospital visits (and the ones where I would be bored out of my skull if I went alone, thankfully!). We got there in ok time, I registered at the reception and we grabbed a seat in the endocrine waiting room. Mum went and got me a coffee (she is a hero) and just as I was raising it to my lips I was called in for the weighing and blood pressure tests.

Weight: 57kg fully clothed and shoe-ed, so I've lost 2kg since the beginning of May and possibly even lost a little since the beginning of July, when I weighed 57kg with no shoes on. That's probably down to the hyperthyroidism. When I first started losing weight, it was because I was on treatment that made me not hyperthyroid anymore, and my appetite dropped massively. Then after my pituitary surgery I lost a bit more weight initially and then was fairly stable for a while. So the fact that it's going down again is now probably a bad thing and due to my crazy thyroid levels. It's strange - I never expected to be one of those people whose doctors want them to stop losing weight, haha!

Resting blood pressure: good; standing blood pressure: a bit low, but fairly standard for me whilst on beta blockers. Then I was finally allowed to return to my delicious coffee.

I actually saw four endocrinologists in total, which was a personal best for me. Although I don't know whether to count one as she didn't speak. I would refer to her as the Silent Endocrinologist, but as she didn't say anything I really have no reason to mention her again.

So first we sat down with Dr Nightcap (shh, I'm stuck for ideas on what to call him) and the Silent Endocrinologist (damnit!) and he went through the basics of symptoms etc. and asked how much I'd been told about what to expect from further treatment. Then Dr Olive and The Main Endocrinologist joined the party. I am so popular!

The short of it is, the tumour has grown and they are going to do more surgery. I had previously been told it had grown "slightly" and this word was repeated. I took this to mean "It has grown a tiny bit, such that a non-medical person like yourself would likely be unable to perceive it at first glance". Then I was shown the latest MRI of my head. It has grown what I would describe as "a slightly alarming amount". You can no longer see the separate pituitary stalk. It's still a fair bit smaller than it was before my original surgery, but at that point the tumour was cystic (ie. had a lot of liquid gunk in the middle, yum) and now it looks probably solid. The good news is that it is not yet encroaching on my optic nerve and it looks like it has remained fairly central so far. You really don't want it growing off to the sides because it becomes impossible to target with surgery if it starts growing around major blood vessels. However, because it has grown a fair bit, they started to bandy around the word "aggressive". I now have an aggressive benign tumour in my head, and if that's not an oxymoron then I don't know what is.*

The Main Endocrinologist described it as "a beautiful surgical target", which I am adding to my list of Weird Compliments I Have Received From The Medical Profession (one day I will publish a book).

The sad news is that it's looking much more likely I might have to have radiotherapy. Previously radiotherapy was mentioned as an option that they would try to avoid if possible. Now it is an option edging its way onto the table. I am super not keen. Obviously I am infinitely more keen on having radiotherapy than on having my head slowly fill up with tumour, but pituitary radiotherapy is really not fun. It basically usually ends up killing off quite a bit of healthy pituitary as well as the tumour, and in the years after treatment you will almost certainly end up needing a selection of fun hormone replacements, which you're then on for life. Plus, with girls (not sure about the boys?) there's a fairly high risk of infertility. I may do a more in-depth post on pituitary radiotherapy later.

So that was a bit sad. Essentially I am back on the lanreotide injections for three months, then surgery. Surgery is a little bit complicated by the fact that I have a persistant sinus/nose infection ever since my last operation, so I will need to be checked out and possibly treated by the Ear Nose Throat team before they let me have surgery. This may apparently involve sticking a camera up my nose. Obviously if that happens you will be the first to get the disgusting details, dear reader! At the moment, surgery may be in November-time, but obviously that depends on appointments getting booked and ENT giving me the all clear and things.

The good news is they're doing fancy endoscopic surgery on me this time which does have higher success rates. The surgery is still a possibility of cure, but success rates are quite a bit lower for a second surgery. And the fact that the tumour has clearly grown in quite a short time (it was stable at my previous scan in March) is not a good sign. Consequently they're already planning how to treat me if/when it does turn out that they don't manage to get the whole bloody thing out.

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*Pituitary tumours are only considered cancerous if they metastasize, which is extremely rare. The majority of pituitary tumours are very slow growing, however mine has grown back quickly so they are treating it as "aggressive". These tumours are also treated as aggressive if they invade the areas surrounding the pituitary fossa.

Film of transphennoidal endoscopic surgery to remove a TSHoma

So while I don't wish to make everyone feel as nauseated as these injections sometimes make me, I found a film of transphennoidal endoscopic surgery to remove a TSHoma! How exciting! This is the type of surgery I will be having soon, probably around November time. The person whose head this was filmed inside is one of my fellow TSH-producing pituitary tumour brethren.

Don't be fooled, it doesn't actually just take six minutes. There's a whole lot of drilling down your nose required first.

Looks pretty simple to me. Well, I mean, it's not rocket science, is it?

The above is a) more suitable for an audience of a delicate disposition and b) one of my favourite Mitchell & Webb moments!

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.

Le Meme

Of course, even if you actually have a brain tumor, the NHS will refuse to pay for a rocket to aim at your head. These budget cuts have gone too far.

Top Tips for People About to Have Pituitary Surgery

Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.

Consequently, I present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.

2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.

3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!

4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.

5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!

6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.

IMFW: Life Imitates Art

So Blogger has changed its layout and everything, which is deeply confusing to a simple soul like me. If I manage to do anything wildly stupid like posting this next April or forgetting to use a title or something, please forgive me. I am easily baffled.

Anyway: back to IMFW! Today's Interesting Medical Fact of the Week is kind of related to two of my previous interesting medical posts, which focused on face transplants. There's an interesting article on the BBC News website about the fact that the University of Lincoln is offering an art course to plastic surgeons and medical students. They work at life drawing, self portraiture and clay modelling, with a focus on the real-life application for these skills: applying them in their surgical work.

It sounds a little bizarre at first, but at second glance it does make sense. The course aims to enhance students' observational skills and their perceptions of their work, emphasizing that they should look at reconstruction from a patient's point of view as well as their own.

Despite its rather trite acronym, the name of the British Association of Aesthetic Plastic Surgeons (BAAPS...) emphasizes the importance of beauty and aesthetic in the work of plastic surgeons, something which is obviously important in purely cosmetic procedures, but equally key in reconstructive work. I know next to nothing about the training of plastic surgeons, but it would certainly be interesting to know whether surgeons who go into this specialty tend to have more of an interest in art compared to those who gravitate towards other specialisms.

A press release from the university emphasizes the historical link between art and medicine, which was far more pronounced centuries ago; it was considered that artists needed an understanding of anatomy in order to recreate the human form on canvas, while medical texts relied upon anatomical drawings produced by artists, who would often attend dissections. Vesalius's seminal work on anatomy, De humani corporis fabrica, written in 1543, incorporated anatomical illustrations from artists working in the studio of Titian. Perhaps now the link between art and medicine link is being strengthened once more.