My latest check-up with endocrinology

So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.

Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.

So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.

Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!

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.

The World's Most Imaginative Title: An Update

Well, I attempted to get to the hospital on Friday for the blood tests I needed, but unfortunately my endocrinologist was in meetings all morning and I couldn't get through to her. She got back to me around half two, but by then I'd walked into town and back, and I was in need of a break; there was no way I'd get to the hospital then. So, I'll try again tomorrow.

I had a nice time with my mum, who came to visit, anyway. Then yesterday a couple of friends came over for tea and cake, which was lovely! At present I can generally manage about 2 - 3 hours of being sociable before I really need a rest (the time is increased if I'm curled up on a sofa for the duration; decreased if I have to do lots of walking or consider complex philosophical problems). I don't generally nap during the day - I think the hydrocortisone I'm on keeps me awake mostly - I just need to sit down somewhere quietly and read or watch TV for an hour or so.

Also: Happy Chinese New Year! I'm off to have a delicious Chinese meal courtesy of my excellent local takeaway :D

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.

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...

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.

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

Round 2 With Neurosurgery

So, back to the story of my various experiences way back in November! A mere two months late...

On the 5th November, I had an appointment at the Neurosurgery clinic - as I discovered less than a week beforehand. I had been very nervous about it, but I turned up at the hospital on time, and went through the strange procedure in Neurosurgery where they seat you in one waiting room for five minutes, then lead you through to a second waiting room further along the corridor shortly afterwards. The last time I had apre-surgery appointment with Neuro, I was kept waiting for about three hours, so I had come prepared with su-dokus and a lengthy novel - but amazingly this time I was only there for around twenty minutes.

 My second surprise when I was shown in to see the surgeon was that he was actually the surgeon named on my paperwork; previously when I went to meet the surgeon, I just met a member of the surgical team, not the leading surgeon dude himself. But there he was, complete with a trainee doctor who was shadowing him for the week. It's a teaching hospital, so I'm quite used to having an assortment of medical students sitting in on my appointments; the highlight was probably a charming exchange student from Japan who was assigned to the endocrinology department. When an endocrinological emergency meant that we were sat alone together in my endocrinologist's office for twenty minutes, he admitted that he had no desire to become an endocrinologist himself, but we did have a very nice chat about Japanese medical schools.

So, I sat down and the neurosurgeon mentioned the results of my recentMRI pituitary scan, and seemed surprised to hear that no-one had told me about them. Back when I first became a patient, when I had an MRI someone was guaranteed to phone me and let me know the results, but alas in recent times this seems to have completely fallen by the wayside, and it's so much hassle trying to call up and find out myself that I tend to just wait until my next appointment to find out.

It was good news; the pituitary tumour hadn't grown since the previous scan in July, and in fact if anything they thought it might have reduced in size slightly, although it's difficult to tell with these things unless it's a substantial change. I had the scan at the end of October, by which time I'd been on my lanreotide injections for two months continuously, and before that I had an injection in August which lasted for a month, followed by a month without medication before the injections started again. So it looks like they were effective at controlling the pituitary tumour growth, which is excellent news! Although I've had the injections before, they've never really looked at whether they had an effect on the size of the tumour by scanning a "before and after" shot, which is something I've found a bit strange, to be honest.

Despite that, the neurosurgeon was (perhaps unsurprisingly) keen to press on with endoscopic transsphenoidal surgery. The risks are largely the same as last time, although slightly increased as it's a second surgery. There's about a 15% chance that surgery will leave me with hypopituitarism - i.e. unable to produce one or more pituitary hormones. The most likely one to go would be thyroid stimulating hormone, as that's what the tumour produces, but it could be anything. Any hormone that I can't make would need replacing with medication (except possibly growth hormone, which they don't tend to replace unless strictly necessary), which I'd probably have to take permanently (although it depends; some people develop hormone deficiencies right after surgery and then recover). I'll be back on the steroids after the surgery until it's clear that my pituitary is producing ACTH (adrenocorticotropic hormone) again. Last time I was given a pill slicer when I left hospital, which I managed to lose, to my great regret - I'm secretly hoping I'll get another one.

There's also a slight risk of waking up with permanent double vision. The surgeon told me that he "can't remember" the last time this happened, but until I see a certificate assuring me that he doesn't have any kind of early-onset dementia, I refuse to be entirely reassured. It's because the tumour is now over to one side of the pituitary and surgery will thus be taking place closer to various important eye nervy things. I hope I'm not confusing you with all this technobabble.

It's a slightly different type of surgery I'll be having this time, endoscopic transsphenoidal surgery, which takes a bit longer but should have better results. I'll be under anaesthetic for longer, so probably will have more side effects from that and take longer to get over the anaesthetic. On the plus side though, they might not need to put packing in my nose afterwards, which would be awesome, because having the packing taken out last time was So Not Fun. However, I bled oozily from the nose for like three days last time and had to wear a hilarious moustache made out of bandages to catch all the blood (sorry for the TMI) for several days, so I guess I might be one of the unlucky cases who still needs packing. But oh my goodness, it would be nice not to have it.

Anyway, the whole consultation didn't take very long at all really, I couldn't think of any good questions, so I went home. The very next day, I was off to see the Ear Nose and Throat people... and have a tiny camera pushed up my nose. But more on that next time...

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.

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 7

Regular readers will be unsurprised to hear that I still have not heard back from the hospital about, you know, getting my surgery arranged or whether I need to go to the MRI I'm due to have in a week. I had a really special time on Friday when I tried to contact the neurosurgery clinic to find out what the heck was going on. It went something like this:

Attempt 1:

Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, could you put me through to the neurosurgery clinic please?
Hospital Employee 1: (suddenly speaking s-l-o-w-l-y and clearly) Yes, of course, I'll put you through now.
(A pause. The phone rings.)
Hospital Employee 2: Hello, Dermatology department. How can I help?

Attempt 2:

Hospital Employee 1: Hello, switchboard at The Hospital, how may I help?
Me: Hi, I just called to be put through to neurosurgery but I ended up on the dermatology phone instead?
Hospital Employee 1: Oh, sorry about that. I'll just connect you now.
(A pause. The phone rings.)

(For like five minutes, then I gave up)

On attempt 3 I got through to the Neuroscience answering machine and left a message, but I'm not hugely sanguine about the results, especially as they've now had three days to phone me. Oi vey!

Anyway, today's question is a more creative question. Presenting:

Pituitary Awareness Quiz

Day 7, Question 7

Q.7: I will be awarding a SPECTACULAR bonus of no less than FIVE POINTS to anyone who can write me a short poem (two lines is sufficient) about/vaguely related to the pituitary. Bonus points for anyone who finds a rhyme for "pituitary"!

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!

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?

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.

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.

___________________________________________
*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.