Thursday, 28 June 2012

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.


"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.

*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.

Wednesday, 27 June 2012

Last Minute Pituitary Surgery

This continues the story from my previous post about the pre-operative assessment I had before going into hospital for transsphenoidal pituitary surgery last year.

The few days before my pituitary surgery were a curious affair. I had been scheduled to go into hospital on the evening of Monday the 11th April, to have surgery on the 12th. On the 8th, I had a missed call from the hospital on my mobile; they left a message informing me that my surgery had been cancelled due to unforeseen circumstances and to await further instructions.

 I completely freaked out. I called the hospital and tried to get some explanation or an indication of when I would be able to have the surgery instead; they explained that someone else whose operation had previously been postponed had been bumped up into my spot and they didn't know when the surgery would be. I hadn't realised until then that surgeons queue up a whole day's worth of patients needing the same operation; hopefully unlike judges they don't suffer from decision fatigue or feel the need to spice things up after the third transsphenoidal surgery of the day.

I was really upset. On a practical level, I had arranged my leave from work, wound up everything I needed to do and planned around my absence. My parents had both arranged leave from work and booked into a bed & breakfast nearby so they could come to see me in the hospital. On an emotional level, I was really nervous about the surgery and desperate to get it over and done with.

My boyfriend came over that weekend and we got hilariously lost attempting to go for a walk to a teashop, which obviously made me feel a lot better - especially when we eventually found it and had tea and scones. My parents said they would come up and stay on Monday night anyway, seeing as they had already arranged to do so, and we could all go out to dinner. So, I got over it and started to get used to the idea that I would have to wait longer for the surgery.

Half the office was pretty confused when I turned up at work on Monday, and I spent the day emailing people saying "lol jokes I'm actually still here". Then, at four o'clock in the afternoon, the hospital called. They said they'd had someone "drop out"* of their surgery the next day, so would I like to have mine tomorrow after all?

Of course my immediate reaction was to shout "STOP TOYING WITH ME" down the phone, but somehow I restrained myself and agreed. Then I just about had time to tell my manager and run out of the office to my house,** call my parents and tell them the news, pack, call my boyfriend and tell him the news, text various people, eat some dinner (at Nandos! highly recommended for pre- brain surgery snacks) and go to sleep.

Six weeks later, I discovered I hadn't even remembered to put my Out Of Office autoreply on. There were a lot of emails to go through.

One of the first things they gave me in the hospital was a pair of compression stockings, which I had to wear the whole time I was in there in order to avoid blood clots. They were extremely attractive - I actually still have them in a drawer somewhere. Next time I take a long-distance plane journey, I'll be sorted!

Anyway, the tale of the day of my surgery is a story for another day...

*Still not sure if that's a euphemism for "died"…

**Ok… a bus was involved at some point.

Tuesday, 26 June 2012

Further Phonecall Funtimes With The Hospital

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

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

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


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

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

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

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

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

Monday, 25 June 2012

IMFW: The (Un)Lucky Yasser Lopez

Incredible news recently of an American teenager who was shot straight through the head by a speargun and survived. After a three hour operation to remove the three foot long harpoon from his brain, he has been up and talking. The 16-year old was shot when his friend was loading a spear gun and accidentally fired it in the process. In an incredible stroke of luck, it missed almost all the major blood vessels in his head and pierced only the right side of his brain, meaning that his speech was unaffected.

Yasser Lopez was conscious and speaking when he arrived at the ER -a good sign, although he later had to be sedated; doctors also had to cut off part of the protruding spear before he could fit into the hospital's CT scanner (the scan images are incredible, by the way - I highly recommend following one of the links to take a look).

The story is reminiscent of the famous tale of Phineas Gage, much beloved of neurologists - and it should be remembered that even when people survive such accidents, they are highly likely to be left with some form of impairment, and follow-ups are critical.

Saturday, 23 June 2012

Hyperthyroid Patients, Unite!

Subtitle: You have nothing to lose but your goitres!

So here's the strange thing: I have a TSHoma - a pituitary tumour which secretes TSH (thyroid stimulating hormone). It's super rare. According to my endocrinologist there are maybe thirteen or so other people in the UK with this condition which, in a population of 63 million, is Not Very Many, although it probably does go largely underdiagnosed; I had my first symptoms when I was around 16 or 17 and didn't get a diagnosis until I was 22.

But anyway, the point is that it can sometimes almost feel like two separate conditions; I have the pituitary adenoma, and the hyperthyroidism it causes. My symptoms, apart from the odd nasty headache, are pretty much exclusively those of hyperthyroidism; my treatment is for the adenoma. Consequently, although I am in all seriousness a paid-up member of the Pituitary Foundation and can chat about transsphenoidal surgery and lanreotide injections with the best of them, I'm missing out on the chance to bitch and moan about sinus tachycardia and getting the shakes with other people whose blood has turned to delicious thyroid hormone stew. More fool me!

People with excess thyroid hormone usually get that way from either a) taking too high a dose of thyroxine medication (exogenous thyrotoxicosis), or b) something else. The former can be dealt with simply by reducing the dose. The latter is more complicated. Possible causes include:

Graves Disease - the most common cause of hyperthyroidism, Graves is an autoimmune disease which can be treated with anithyroid drugs, surgery to remove part or all of the thyroid, or a dose of radiactive iodine. After such treatment there's a substantial and ironic risk of hypothyroidism - i.e. not having enough thyroid hormone.

Tumours of the thyroid gland - thyroid adenoma is a benign tumour of the thyroid gland which may secrete large amounts of thyroid hormone, while thyroid nodules may be benign or malignant and again may or may not release thyroid hormone - in some cases they may actually inhibit its production, causing hypothyroidism.

Thyroiditis - inflammation of the thyroid gland. Although this often initially leads to high levels of thyroid hormone being released, it usually progresses to thyroid disfunction with the gland unable to produce sufficient hormones, and ultimately causes hypothyroidism. Around 7% of women experience temporary thyroiditis after giving birth (postpartum thyroiditis) which may lead to hyper- or hypothyroidism, or both; this usually resolves itself.

TSH hypersecretion - super rare, but usually caused by a pituitary adenoma (hurrah!). However, I believe there is also the possibility of a tumour in the hypothalamus causing excess Thyrotropin Releasing Hormone and hyperstimulating the pituitary gland to overproduce TSH, which in turn would hyperstimulate the thyroid gland to overproduce thyroid hormone. Again, it's very rare.

I guess really I should be grateful for this, as effectively I have two health conditions for the price of one. This blog is usually focussed mainly around the dramatic "there's a tumour in my head!" aspects of my pituitary adenoma, and poor little hyperthyroidism barely gets a look in, except for when I complain about my tachycardia/hair falling out/absurd appetite issues. But no longer! From now on I vow to go on about hyperthyroidism more. So you guys will get two lots of whingeing for the price of one!

Thursday, 21 June 2012


I finally had a phone call from the hospital on Monday. I was offered a timeslot for my overnight stay and all the various tests they want to do on the 2nd-3rd of July. Alas, they can't do the PET scan on that day because the tracer they use comes in batches sufficient for two people, so they have to match you up with someone else who needs the same scan before they do it. So we're looking at doing the PET scan on the 10th July instead.

Good news!

It was a slightly disconcerting phone call; the endocrinologist asked me if I could confirm that the dates would suit me on the spot, and I said that I was pretty sure they would be fine but that I would need to check it out with work before I could be 100% certain. This seemed to genuinely confuse her. Equally strange was when she asked me if I was on any medication; I replied that I'm on propranolol, a beta blocker. She said that it could interfere with the tests and I would have to stop taking it for three days; so I said that although I was willing to give it a go, I would probably find it quite difficult to not take any for three days. This really baffled her - she asked me what I was taking it for. I said tachycardia (fast heartbeat) - but I'm pretty sure if I had said that I was taking it to keep the little green men out of my ears, she couldn't have found that more peculiar. It was strange, because this was something I had already discussed with the endocrinologist who originally asked me to have these tests - and he said that if I found it difficult to get by without it then they'd just not do some of the tests.

Ironically, my heart tends to operate on a bit of a timelag and takes a while to show any effect from my thyroid levels either increasing or decreasing, and it has only started to really go a lot faster in the last two weeks or so - which means that if they'd just organised the damn tests when they said they would, I might have been able to cautiously get by. However, I will be travelling through London on the 1st July with heavy bags and that is stressful enough even when your resting heartrate's not 120bpm.

Anyway, the long and the short of it is that she said that these dates "still need to be confirmed" with the clinical research facility place where I will be going (how exciting) and that she would call me back and let me know when they're definite and also tell me more about what exact tests they will be doing. That was on Monday. Today is Thursday. I am really hoping that doesn't mean there is a problem with the dates.

Monday, 18 June 2012

IMFW: Autism Research Defrosted

In a previous post about brain injuries in sport, I wrote about the Centre for Traumatic Encephalopathy, which collects and studies brain tissue from athletes involved in high-contact sports. Recently another "brain bank" has been in the news; the Harvard Brain Tissue Research Center at McLean Hospital, where a freezer malfunction damaged one-third of the world's largest collection of brain tissue donated for autism research.

150 brains were prematurely thawed as a result of the broken freezer, with alarm systems and daily inspections failing to alert staff to the malfunction until it was too late. Some of the tissue may still be useable for genetic research, but it's considered to be a huge setback in the field of autism research generally. Postmortem research has previously led to breakthroughs in the study of Huntingdon's disease and Parkinsons.

The loss of the potential research opportunities afforded by the collection is devastating not only to the medical community, but to the families of those whose brains were donated for research. The hospital is conducting two investigations into the fault, with a third carried out by a charity, Autism Speaks.

Sunday, 17 June 2012

A Lesson From My Former Landlady: Part 2

I know what you're all thinking after yesterday's post. Maybe I was just a genuinely awful tenant and this poor innocent landlady was understandably desperate to get rid of me. Maybe that £65 just barely covered the emotional trauma of having to live with me. Maybe my mere presence in a house creates the kind of dark cloud of horror and despair that nothing but years of intensive therapy can lift.

Well, I admit I wasn't perfect. Due to all my dance classes, I had a very unpredictable pattern of kitchen useage, and I did once manage to lock my boyfriend in the house and trap him there, because I am apparently incapable of understanding how keys work. I wasn't allowed to hoover my room in case it scratched the floor, so I only swept the floor occassionally. Sometimes I would move bags that were left in the middle of the hallway, so that I could get by. I admittedly never cleaned the windows. And I did once keep a friendship cake on the sideboard in the kitchen for almost two weeks - although I feel that offence should be mitigated by the fact that I gave June and her kids several of the resultant cupcakes.

On the other hand, here is a small taster of what it was like living with June:

1. She once went on holiday without warning me at all in advance; I just arrived home to find an email saying she wouldn't be back for a week. This would not have been a problem, except she turned off the heating before leaving and I had no idea how to turn it on, so it was freezing, and she locked away the wireless internet box in a room with no key, meaning that whenever I had problems getting internet access, which happened every now and again, I was unable to reset the wireless and had to just wait until it fixed itself, which could be hours. Oh, and she also left her kid's hamster in the house with no-one to look after it but me. I emailed her back about the above issues and she completely ignored it, even when I texted her as well; I didn't call because I didn't know what country she was in.
Fortunately, after four days, just at the point when the hamster's food was starting to run low and I was starting to think I would have to find something for it to eat, her ex husband rocked up at half nine at night to pick it up, with no warning.
2. The whole house was permanently a huge mess (except for my room in the roof… my room was lovely, that's the only reason I put up with it), particularly the kitchen, where plates of congealed food could lie in state for days. At one point, some mouldy bananas were left hanging up in the kitchen for two weeks. That's two weeks after they'd already gone mouldy.

3. When I moved into my room, one of the curtain fittings was broken and falling off the wall. Despite raising it more than once, it was never fixed. Nor was the door to my kitchen cupboard fixed in the months after one of its hinges detached. Apparently June - a fully grown woman with children of her own - was waiting for her elderly parents to come and fix them.
She also got her parents to come and stay at the house for a week while she went on holiday, so that they could do her gardening. They came and worked in the garden and swept her paths and fixed her fence, and they didn't even see her or their grandchildren. This didn't affect me in any way, I just thought it was a pretty crappy thing for her to do.

4. There was a mysterious and horrible smell coming from the downstairs drains for a couple of months after I moved in. After talking to her about it several times, she finally booked a plumber, without mentioning this to me until two days beforehand. She managed to book him on my day off, when I had been planning a lie in and general lazy day, and informed me that I would need to vacate my room that morning by eight o'clock - earlier than I would usually leave for work. I said that I had booked leave and had been planning a lie in and would have appreciated it if she had checked with me that it would be ok. Her response? "Oh well, it's too late, he's booked now".

5. She kept her Christmas tree up and fully decorated until at least the end of March, when I left. Not really a problem as such, just Very Weird.

I could go on, but I'm bored now. In any case, that's got to be enough for you to see that she wasn't the easiest person to live with. However, I have become a much more patient person in the last few years (except when I'm walking behind slow people. OUT OF MY WAY, SLUGGARDS!)* and I do at least try to think the best of people. Despite all the above, I liked my room, I thought I got on fine with June, I kept myself out of the way and I always made sure I tidied up after myself. Even though my mum and boyfriend** clearly (and accurately) marked her out as a Bit Of A Weirdo after meeting her just once or twice, I really did make the effort. So for her to effectively turn on me for the sake of a measly £65 felt pretty horrible, given the amount of effort and patience I had put into maintaining a good relationship with her.

Even after she had her big shouting fit at me and docked her pound of flesh from my deposit, I was naive enough to assume that would be that. I had previously provided her with my new address so she could forward any post; I was pretty organised with getting my address updated with various organisations that write to me, but I've had problems in the past where I've called the hospital and given them a new address, only for them to fail to change their records and continue sending stuff to my old address, so I wanted to be safe. I assumed everything was fine.

This week, I suddenly realised I had failed to provide the professional body that I'm a member of with my new address. They don't usually send me much, but I emailed them anyway. I was impressed when, two days later, they sent me a magazine to my new address. Until I looked at it and realised that it had previously been sent to my old address at June's house. Instead of forwarding it to the address I had supplied her with, she had marked it "Not known at this address, return to sender." Obviously the professional body had received it back and been waiting to get my new address so they could re-send it.

But what a horribly petty, vindictive thing for June to do. She knows my new address perfectly well; writing it on the envelope before sticking it back in the mail would take no more effort than writing "return to sender" before sticking it back in the mail. Fortunately she's chosen to do that with a magazine that's not important. But what if it had been medical information sent to me by the hospital? It's not going to come in an envelope marked "important medical info for Emer, please don't dick around with this".

I had decided to put my previous encounter with June to the back of my mind, but this upset me all over again - because now I'm worried that the hospital could have sent me a letter which I haven't received thanks to her childish behaviour. I have no idea why she would choose to behave towards me in this way. Presumably it hasn't even occurred to her that messing around with someone's mail could have serious consequences - or else it has occurred to her, and she really doesn't care. Maybe that was the only bit of mail that she's done this with, and she just wanted to make some kind of point - but I can't know that for sure.

I'm hoping that, as I spoke to my endocrinologist yesterday, he would have seen any problems with my address on the hospital system and mentioned it, and I will call and check that they have the correct address for me now. But I don't know what to do about June. Part of me really doesn't want to let this go; I think she should be made aware of how serious her actions could be. But equally, I have no desire to have any contact with her ever again. I'm worried if I email or write to her, I might just make things worse - but I do think that telling her about my illness might give her a bit of a wake-up call regarding her behaviour.

Any suggestions?

* Is sluggard actually a word? It should be. Answers on a postcard, please.

** Some of the few people to have met her - for the most part I didn't invite people to the house because I was embarassed that the kitchen etc. was so horrible

Saturday, 16 June 2012

A Lesson From My Former Landlady: Part 1

I was originally going to name this post something else, but in deference to my readers who have delicate constitutions, I decided against it. Anyway. While it will be something of a massive rant, it's actually a good way of illuminating a topic that I've been wanting to write about for a while.
So for about eight or nine months from last summer, I lived as a tenant in a house occupied by my former landlady and her two children, who split their time between her house and their dad's. My former landlady - let's call her crazy bitch June - gave me notice in January that she'd need me to move out in June because she wanted to redecorate the room I was in. This seemed a suspect excuse, as my room was the only part of the house not in need of decorating, but no matter; I didn't have the chance to discuss the issue with her because she took the rather peculiar decision not to tell me in person, but to wait until I went on a weekend away and then slip a note about this under my door. I started to look for a new place almost immediately, because I knew I would have exams in June and didn't need the stress of moving out at the same time.

In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*

I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.

The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.

June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.

She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.

By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.

Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.

When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...

It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.

That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?

Because it shouldn't.

You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.

Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?

Of course it would.

And that's why I'm glad we didn't go piss on her doorstep.

Well... mostly glad.

* So much for "redecorating".

**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.

Friday, 15 June 2012

IMFW: The King's Evil

Recently, the UK celebrated the Queen's Diamond Jubilee, marking sixty years of her right regal reign. At some point over the weekend, I made a joke about scrofula - that most historical of diseases - and no-one got it. Now, people often don't get my jokes, and I'm sorry to report that approximately 70% of the time this is because they are Not That Funny. However, the other 30% of the time they are absolutely hilarious, and this was one of those times. Consequently I was forced to the conclusion that either 1.) my friends are, to a man, ardent royalists who refuse to laugh at an old lady purely because she has an unusually heavy and unfashionably metallic hat, or 2.) they didn't know what scrofula was.

And so, in the interests of education, this week's extremely overdue Interesting Medical Fact of the Week will focus on scrofula, a.k.a. the King's Evil, a.k.a. tuberculous cervical lymphadenitis - and how's that for a rapper name?

Scrofula is effectively tuberculosis of the neck, resulting in swollen lymph nodes. In children it is often caused by infections other than mycobacterium tuberculosis, but when tuberculosis is the underlying cause, there are also associated symptoms of fever, weight loss, and malaise. It's a very unsightly illness; the swelling of the neck can become so large that the skin around it ruptures, leaving open wounds.

With the huge decline in tuberculosis rates over the past sixty years, scrofula has become a rare disease, except among the immunocompromised, but historically it was much more common. For hundreds of years in England and France it was commonly believed that scrofula could be cured by the touch of a king,* and indeed monarchs would hold huge events in which they touched hundreds of scrofula patients. From 1633, the Anglican Book of Common Prayer even included a special service for the ceremony, and it was traditional for the monarch to give the affected person a coin. Kings and queens varied in how far they were prepared to go with this tradition, however; although Queen Anne (r. 1702 - 1714) was fond of helping the scrofulous and even touched a young Samuel Johnson, who suffered from the illness, her successor King George I (r. 1714 - 1727) abandoned the practise as being "too Catholic" and also, presumably, too gross.
*Queens were an acceptable alternative for the scrofula sufferer on a budget.

Thursday, 14 June 2012

Morning brain is stupid brain.

Long time no blog! I apologise profusely, please forgive me. I blame exams and the subsequent having-of-fun after them. Anyway. Resuming regular service.

So yesterday I called the hospital again and expressed my unhappiness at the fact that, six weeks after the appointment in which I was told I would be contacted in a few days, I still had not so much as heard from them. By now I was supposed to have had all my tests and be back on lanreotide.

This morning - a phone call from the pituitary endocrinologist! Who managed to call me at the exact same time that my alarm usually goes off in the morning. My sleepy brain couldn't work out why the alarm wouldn't snooze in the usual way, when suddenly I realised it was a phone call. Panicking, I tried to answer it using the touch screen (instead of just pushing the big green button before my eyes). The touchscreen - as usual - sulked and refused to function so early in the morning.* So I missed the phone call but did get an answerphone message saying he would call back and he apologised for the "unexpected delay" in getting back to me.

So now I am once more waiting… interminably waiting...
*Much like my brain.

Friday, 8 June 2012

Quick Update

My poor abandoned blog! I have not forgotten you, I just have exams. The last one is today and then I shall be free to come back and write up masses of dull posts. Hurrah!

In other news: still no word from the hospital. It has now been over five weeks and I have called them twice.