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?

IMFW: Skinny Minnie or Stressy Bessie?

My favourite medical fact of the past week has been that a study has indicated that men in stressful conditions are more likely to find larger women attractive. Presumably this should prove useful to husband-hunters everywhere - the more slender ladies can go on the prowl at yoga centres and juice bars while their heavier sisters can target office blocks and traffic jams... In less jolly news about things that are definitely true, a man with Parkinson's was arrested at the Olympic men's cycling road race. His illness meant that he did not "visibly appear to be enjoying the event", and this coupled with his proximity to a group of protestors apparently was enough for him to be arrested for breach of the peace.

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...

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

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

*Censored* (A Rant)

Oh god, I hate hospital administration systems.

Two weeks ago, I went to the hospital. My doctors wanted to keep me off my medication for 6 weeks, despite the fact that this would worsen my symptoms, so that they could run some tests and do some scans while it was out of my system. They said they would arrange for one of their research people to call me and arrange the tests. I pointed out whilst I was standing right there with them that as I have exams and a holiday coming up, there would be some dates I couldn't do, but that I could write these dates down and hand them over immediately so as not to waste time.

No, they said, that's fine. I would get a telephone call in the next couple of days, no worries.

Two weeks later, no bloody telephone call, and I'm going on holiday for a week tomorrow. I don't have a number I can speak to any of them on directly, the best I can do is call one of the doctors' receptionist, who is only in for three mornings a week. So I called her yesterday morning and left a message pointing out that if they wanted to arrange these tests before I left, they would need to get their freaking act together.*

Today at lunchtime I managed to miss the receptionist returning my call. There were no apologies for the massive delay; she left a message saying there was no prospect of getting me booked in today and that I should call back on my return from holiday. There was also no explanation of how this went from being the hospital's responsibility to call me to being my responsibility to call the hospital.

Sadly, I am incapable of shouting swearwords at my phone loudly enough to make myself feel better.

It is so unbelievably frustrating that this seems to happen almost every time anything hospitacular has to be arranged. Oh, your surgery's postponed at the last minute. Oh, your surgery's now back on with less than 24 hours notice. Oh, your letter got lost in the mail. Oh, didn't I mention that you're going to be booked in for an overnight stay? Oh, your MRi appointment never got booked? Well there's no point in you sitting here in this neurosurgical aftercare appointment then! Bye!

This means that three weeks will have gone by before I get booked in for ANY of these arsemongering tests and scans. On my return from holiday, I have exams. Essentially, this "six week period off medication" just got extended to an "indefinite period until we can be bothered to get back to you, lol." They really have no clue how shitty it is to seesaw on and off taking this stuff. Every time I start/stop taking it, there's a bunch of side effects - it messes up my skin and appetite and stuff - on top of the symptoms I get anyway when I'm not on it (heart too fast, hair falling out, etc. etc).

In my now-lengthly experience, it seems that hospital doctors are completely clueless about the barrage of administration that patients have to maneuver through in order to ever actually see them. Once, a letter that was sent to me giving a time and date for an MRi scan was lost in the post. I knew I was expecting an appointment, so when I didn't get a letter, I called the endocrine department, the MRi department, the main hospital switchboard and even I think neurosurgery for good measure, to try to find out if an appointment had been booked. Everyone told me they had no idea, had no means of finding out, and no clue who I should speak to - except the MRI department, who told me that I definitely didn't have an MRi booked. About two months later, the letter eventually turned up, by which time I'd obviously missed it. At my next appointment with my endocrinologist, he actually attempted to give me a telling off for missing an appointment, and then clearly refused to believe me when I explained what happened.

Well, this has been a massive rant. I do feel slightly better. But I am still pissed off.

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*Except obviously I was politer than that.

Addisonian Crisis... or stressful football match?

I found an article on BBC News about how a woman was recently diagnosed with Addison's Disease, and one of the key clues to her underlying condition was her extreme response to the stress of watching particularly close and high profile football matches. They think that treatment for her condition may have cured her extreme reaction to tense games of football... but they can't be sure because her treatment and diagnosis has happened at the same time as a run of easy matches for her favourite team!

Addison's Disease is a medical condition which occurs when the body does not produce enough cortisol, a steroid hormone - basically it's the opposite of Cushing's Disease. Some people who suffer from pituitary problems due to a pituitary tumour, or after surgical removal of a tumour, are unable to produce ACTH, the pituitary hormone which stimulates the body's production of cortisol, and consequently they need to take steroids to make up for the lack of cortisol. The tricky part is that the body needs more steroid hormone when it's under stress, so when people who take steroids are sick or injured, they need to double their dosage.

After pituitary surgery, most people including me, go onto steroid replacement pills just in case there's been any damage to the part of the pituitary that produces ACTH, and take them until doctors are sure that the body is producing steroids naturally.

The aim of this is to make sure they don't suffer an Addisonian crisis, which is an acute medical emergency where there is a severe shortage of cortisol, usually in a high-stress situation. If untreated it can lead to death or coma, so people whose bodies don't produce cortisol on their own usually have some form of medical ID in case they're in an accident, to inform paramedics that they will need steroids immediately.

Russell Watson

I was originally going to make the title "Russell Watson: What You Got, Son?" but obviously, that would be stupid. So I decided not to mention it.

Ahem.

Anyway, today's post is (surprisingly) about international singing sensation and all-round famous guy Russell Watson. Ever heard of him? NOR HAD I.

But last year he popped up on an episode of Never Mind the Buzzcocks, which aired on the evening of the 2nd December. I had an important exam the next day, so obviously I was watching. Mr Watson mentioned that he had had a brain tumour. I, as yet undiagnosed,* thought nothing more of it, not least because the notorious buffoon Tim Westwood was hosting the show and I was quite busy despising him.

About a week later, I got the call from the hospital announcing that I had a pituitary adenoma. Russell Watson was far from my mind. But then one day, as I was waiting to collect a takeaway in my local Chinese, I began paging through their ancient and tattered copies of the Daily Mail** and came across a month-old article about the same Mr Watson and his second round of brain surgery for a "benign brain tumour".

So obviously I had to look it up. After a bit of searching, my suspicions were confirmed: Russell Watson's pituitary gland also enjoys cultivating adenomas in its spare time. I can't really say why knowing this made me feel better, but I guess it's just vaguely reassuring to know that there are other people out there. The poor guy had a particularly nasty case of the pituitary tumour as well, he's had two surgeries and radiotherapy, and the first surgery apparently had a knock-on effect to his pituitary function, something which so far I've been lucky enough to avoid.

 However, I would like to take this opportunity to glower at the British press for their woeful lack of precision when reporting on brain tumours. It seems that any distinction beyond that of "benign" and "cancerous" is completely beyond them. For anyone who knows their oligodendroglioma from their meningioma, and particularly for anyone trying to identify famous fellow tumourheads, it makes life rather challenging. Are the details of a diagnosis too much to ask for?

Also, while I don't mean to sound like a stalker who's read every article on the subject, I have to say that I particularly empathised with the last lines from with Russell Watson in this article: "Specialists repeatedly told him that he was only suffering from stress, to which he replied: 'The only thing that's stressing me is this pain in my head.'"

Just like all the years of me visiting various doctors complaining that my hair was falling out. And my heart was doing funny things. And I felt tired all the time.***

UPDATE: You may also be interested in further posts I've made about famous people with pituitary adenomas, which you can find here and here, and there's also this post specifically looking at famous people with Cushing's Disease and another post looking at the strange shortage of famous women with acromegaly when compared to their male counterparts.
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*Though admittedly in the realm of "we're pretty sure it's a pituitary adenoma. Because it's the only idea we have left".

** Oh god. I know. I'm so sorry. I'll never do it again.

***Any doctor treating me in future may be interested to know that if any symptom I may display is ever put down to "stress" again, I will not be held responsible for my actions. Of course, being accused of suffering from "stress" comes with the unfortunate Catch-22 that anyone repeatedly insisting that they're not bloody stressed looks exactly like a stressed-out mentalist. Le sigh.