Kudos to my lovely boyfriend for this very interesting link to a website created by an Italian man with brain cancer, who requested copies of his medical files from his hospital in order to send to other hospitals and doctors for their opinions, only to find that they were in proprietary formats which he could not open on his computer. Being computer savvy, he managed to convert them into open formats so that he can share his information with everyone, online. And he's posted them on his website.
It might sound weird, this idea of posting medical records online, when these are documents that we're used to treating with the utmost confidentiality, but already he has had responses from doctors - and the idea is that everyone is encouraged to use the data to create a cure, whether that's a doctor suggesting treatment, an artist creating artworks, videos, poems... you name it. Other people with similar conditions can send in their own data, if they wish, to be added to the site.
The author of the website had some very interesting thoughts about how the way in which his data is treated parallels the way in which his disease has been treated:
"The data formats which I was "forced" to hack is in a peculiar state of harmony with the common definition of "disease/illness".
The definition of "diseases" is "reserved" to doctors. Often using words which we don't understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.
The DICOM format is open, yes, but in a very "peculiar" condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the "cure": you can't understand it, you can't reuse it, you can't combine it with other possibilities. It is thought for "experts" and "professionals" (of one single type), leaving little space for other possibilites for expression and socialization."
It's interesting to consider the possibility that the sacred doctrine of doctor-patient confidentiality may, in some cases, end up mitigating against patients having the ability to take charge of their own healthcare, or seek the widest possible range of medical opinions on their condition. Now that so many hospital systems and even procedures are digitised, there's clearly a balance to be struck between protecting patients' private information, and making it so inacessible that patients are unable to view their own data.
Historically, medical education and knowledge has been very much the preserve of the privileged few, and patients weren't necessarily expected to understand their own conditions. With the rise of the internet, it's so much easier for patients to be informed about their own illness - some might say too easy - and thus it seems terribly ironic that the same medium enabling greater patient choice and freedom should simultaneously be creating new and unwelcome restrictions on their ability to use their own data in whatever way they desire.
Posting your medical records on the internet for all to see may not be everyone's cup of tea. But it should still be an option if that's what you want to do.
Check it out: http://artisopensource.net/cure/
Showing posts with label ethics. Show all posts
Showing posts with label ethics. Show all posts
Friday, 14 September 2012
Thursday, 26 July 2012
Failing Treatment: Patients, It's Your Fault
One of the things you notice, once you've been around doctors and hospitals for a while, is the way that medical terminology sometimes seems to place a slightly unreasonable amount of blame on the part of the patient.
For example, the website for Korlym, a drug used to control high blood sugar in patients with Cushing's syndrome, states that Korlym is used "in adults with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or cannot have surgery".
1.) I wasn't aware that surgery was a test.
2.) Surely if it were a test, the person charged with passing it would be the surgeon, not the patient zonked out on the operating table.
It seems strange to me that they went for this phrasing (and not as a one-off either, it appears elsewhere on their website). Would it really be difficult to say "patients whose surgery was unsucessful" or "patients whose surgery did not effect a cure"? It's not an isolated case restricted to one copy editor on one website either; it's fairly common to read things like "the patient failed chemotherapy"/"radiotherapy"/"to tie their shoelaces that morning, leading to chaos on Ward Five."*
Doctors of the world, please note: patients don't fail treatments.** Treatments fail patients.
It's an entirely obnoxious phrase, and when I started researching the question it was heartening to see that I am by no means the only person to object to it. As if patients don't feel crappy enough after discovering that their treatment has not succeeded, it then seems to be implied that this is in some way their fault. Yes, it's a medical convention; no, doctors don't mean to imply that the patient is to blame for the treatment not working. But as this patient points out, it's an entirely unnecessary little phrase which can serve to undermine the doctor-patient relationship. Patients who are not au fait with medical terminology - i.e. almost all of us - are unlikely to be impressed if they hear it.
There are plenty of problems out there in the world which are far more serious and important than this little question of syntax. But is it really so hard to change "[Patient Y] failed [Treatment X]" into "[Treatment X] failed [Patient Y]"?
***
UPDATE: So, there's a twist to the tale! I wrote to Corcept Therapeutics, Korlym's creators about this, because I'm pushy that way, and their Director of Commercial Operations got back to me like a bolt of extremely speedy lightning, - despite the fact that I do not have Cushing's Syndrome and thus am hardly their target audience. Here's a couple of extracts from his email:
"Our intent was certainly not to place any blame on the patient for the surgery’s failure, but I can certainly see how the words could convey this. [...] In the world of pharmaceutical marketing and communications in the US, we are highly regulated regarding what we say and how we say it, among other things. For many things, we use language directly from our FDA provided Full Prescribing Information (also known as the label or package insert) and Medication Guide. These two FDA provided documents use the exact language “patients who…… have failed surgery”. In the case of our website copy, we picked up the language directly from these documents.
*Well, maybe not the last one.
**Unless of course they're non-compliant with the treatment regime. In which case, have at them.
For example, the website for Korlym, a drug used to control high blood sugar in patients with Cushing's syndrome, states that Korlym is used "in adults with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or cannot have surgery".
1.) I wasn't aware that surgery was a test.
2.) Surely if it were a test, the person charged with passing it would be the surgeon, not the patient zonked out on the operating table.
It seems strange to me that they went for this phrasing (and not as a one-off either, it appears elsewhere on their website). Would it really be difficult to say "patients whose surgery was unsucessful" or "patients whose surgery did not effect a cure"? It's not an isolated case restricted to one copy editor on one website either; it's fairly common to read things like "the patient failed chemotherapy"/"radiotherapy"/"to tie their shoelaces that morning, leading to chaos on Ward Five."*
Doctors of the world, please note: patients don't fail treatments.** Treatments fail patients.
It's an entirely obnoxious phrase, and when I started researching the question it was heartening to see that I am by no means the only person to object to it. As if patients don't feel crappy enough after discovering that their treatment has not succeeded, it then seems to be implied that this is in some way their fault. Yes, it's a medical convention; no, doctors don't mean to imply that the patient is to blame for the treatment not working. But as this patient points out, it's an entirely unnecessary little phrase which can serve to undermine the doctor-patient relationship. Patients who are not au fait with medical terminology - i.e. almost all of us - are unlikely to be impressed if they hear it.
There are plenty of problems out there in the world which are far more serious and important than this little question of syntax. But is it really so hard to change "[Patient Y] failed [Treatment X]" into "[Treatment X] failed [Patient Y]"?
***
UPDATE: So, there's a twist to the tale! I wrote to Corcept Therapeutics, Korlym's creators about this, because I'm pushy that way, and their Director of Commercial Operations got back to me like a bolt of extremely speedy lightning, - despite the fact that I do not have Cushing's Syndrome and thus am hardly their target audience. Here's a couple of extracts from his email:
"Our intent was certainly not to place any blame on the patient for the surgery’s failure, but I can certainly see how the words could convey this. [...] In the world of pharmaceutical marketing and communications in the US, we are highly regulated regarding what we say and how we say it, among other things. For many things, we use language directly from our FDA provided Full Prescribing Information (also known as the label or package insert) and Medication Guide. These two FDA provided documents use the exact language “patients who…… have failed surgery”. In the case of our website copy, we picked up the language directly from these documents.
"I think we have room to improve the language, using language that you suggest, or something similar. We have a compliance team that meets semi-regularly to review our communication material. At a point in the near future, we will review this language change, in hopes to get it approved for a future website update."
So thank you very much, Corcept, and the moral of the story is this: if there's something you don't like, don't keep it to yourself - whinge!
__________________________________________*Well, maybe not the last one.
**Unless of course they're non-compliant with the treatment regime. In which case, have at them.
Wednesday, 11 July 2012
The Very Scary Case of Kane Gorny
Before going into hospital last Tuesday, I stopped off at one of my favourite cafes for a hot chocolate, as a pre-hospital treat. I wasn't allowed caffeine in the three days before going in, so I had been suffering from a woeful lack of hot drinks. I got my hot chocolate (which was delicious) and sat down by the pile of daily papers they keep at the café. Alas, all the more upmarket titles had been taken, so I had to settle for that peculiar bastion of journalistic achievement: the Daily Mail.
You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.
You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.
I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:
You can imagine my feeling of ill-omen when, immediately before going into hospital overnight for further investigations into my pituitary tumour, I saw that the Mail's headline story was about Kane Gorny, a 22-year-old with a pituitary tumour who died of dehydration in hospital after nurses denied him his medication.
You can read the Mail's story online here. According to the Mail, it seems that after his entirely routine hip replacement surgery, nurses did not give Mr Gorny medication necessary for fluid retention; he became so agitated from dehydration that he called 999 in an attempt to get some water, but was sedated and left unattended overnight, despite his mother raising concerns. Even after his death, the attitude of some members of the nursing staff appears to have been appalling.
I thought I would tackle a couple of questions raised by the reporting on this terrible story, before moving on to look at it as a whole:
What was wrong with him?
Kane Gorny suffered from a pituitary tumour; that much is certain. The exact details of Mr Gorny's condition are still somewhat sketchy and vary depending on which paper you read, but I'm going to guess that he possibly had acromegaly or Cushing's Disease, from the statement of his endocrinologist that he had a "rare tumour", and the fact that he had joint problems.
Most papers have reported that he had a "malignant" brain tumour or "brain cancer". The tumour may well have been cancerous, but it should perhaps be noted that this extremely rare for pituitary tumours; they are sometimes misreported as malignant due to journalists misunderstanding the condition and the fact that a tumour labelled "benign" may still be very harmful. In any case, I'll be looking at the definition of malignancy/cancer with regard to pituitary tumours in a future post, hopefully within the next couple of weeks, because it's an interesting question.
Why did he need a hip replacement aged just 22?
After pituitary surgery, sometimes the healthy pituitary gland is damaged, leaving it unable to produce certain hormones, including ACTH (adrenocorticotrophic hormone), which stimulates the adrenal glands to produce the steroid hormone cortisol. Without cortisol in the body, you can die quite quickly - consequently, it is standard to give patients steroid pills after surgery until doctors are certain their pituitary gland is able to produce ACTH. If the pituitary gland has been damaged, patients will need to take these pills for life.
Most reports have stated that Mr Gorny's steroid treatment left him requiring a hip replacement; high levels of steroids in the body can lead to avascular necrosis (although not in "a couple of weeks" as one paper initially reported). Additionally, if he did indeed have Cushing's or acromegaly, both of these conditions can adversely affect joints.
How did he die of dehydration so quickly?
A healthy human can live for a couple of days without water, depending on exertion and environmental conditions. Kane Gorny could not. After his pituitary surgery, Mr Gorny was left with diabetes insipidus. This is a very different condition from what we refer to as "diabetes" (diabetes mellitus) and is caused by a deficiency in anti-diuretic hormone (ADH, or vasopressin). Anti-diuretic hormone is secreted by the pituitary gland and helps to control the body's fluid balance. In diabetes insipidus, the lack of this hormone means that the body cannot conserve much of the water which it takes in, and consequently the sufferer becomes extremely thirsty and needs to urinate frequently. Unfortunately, developing this condition is a fairly common side-effect of pituitary surgery and pituitary radiotherapy.
In order to treat his diabetes insipidus, Kane Gorny would have needed to take a drug called Desmopressin (DDAVP), which is a synthetic substitute for vasopressin. As long as he was taking this drug, his body would be able to retain a normal amount of the water he drank, and he would not become dehydrated. When the drug was witheld, his body could not remain hydrated, and he died.
How could the hospital get this so wrong?
Unfortunately this is the question that can't be answered. Kane Gorny's death appears to have been preceeded by a number of absolutely catastrophic blunders at the hospital. His endocrinologists were not informed that he was in the hospital for surgery; his surgeon was entirely unaware of his condition; nurses did not read his notes; no-one listened to his mother's concerns; the list goes on.
Diabetes insipidus is a common problem among pituitary patients, but far more rare in the general population. Endocrine and neurosurgery nurses would likely be familiar with the condition, the importance of the medication Mr Gorny was taking, and the crucial need to monitor his fluid balance. The nurses actually looking after him knew almost nothing about it.
It's a sad fact that there are a hell of a lot of medical conditions in the world. Patients with diabetes insipidus or the inability to produce steroid hormones are encouraged to wear MedicAlert jewellery to alert paramedics and medical staff to their conditions in case of emergency, yet it seems even when medical staff have access to full notes on a patient they can go unheeded.
Sometimes it gets frustrating when you're in hospital or go to the doctors and are asked for the thousandth time to explain what's wrong with you. In the future I'll try to be more grateful that someone is checking...
_____________________________________________________________________
Kane Gorny's brother is fundraising for CLIC Sargent. You can donate here.
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
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.
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.
***
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 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.
Monday, 2 April 2012
IMFW: Face Transplants
Today's Interesting Medical Fact of the Week is all about face transplants! Recently an American man named Richard Lee Norris received what is allegedly the most extensive face transplant ever carried out, in which he received a new jaw, teeth, tongue and nose. The pictures are pretty incredible. After being severely disfigured by a gun accident, Mr Norris had been living as a recluse for fifteen years, wearing a mask whenever he had to leave home - and he had lost his sense of smell completely. That's all changed.
Only the 23rd facial transplant ever carried out, the operation was a gruelling 36 hours long; all Mr Norris' facial tissue from the scalp to the back of the neck was completely replaced. As with every transplant, there is a risk of rejection; recipients of face transplants have to take immunosuppressant drugs for the rest of their life, which increase their risk of cancer and infection. The first Chinese recipient of a partial facial transplant, Li Guoxing, died in 2008 just two years after his transplant, when he either stopped taking his immunosuppressant drugs or failed to take them correctly. There is also the potential psychological issue of patients finding it difficult to adjust to their new face; although such transplants don't give the recipient the face of the donor, nevertheless even after the most successful operation they will never regain their appearance from before their injury.
The world's first face transplant came in 2005 in France, on Isabelle Dinoire, whose face was so badly mauled in a dog attack that she was left unable to speak or eat. Dinoire has had problems with her transplant, including kidney failure and two episodes in which her body tried to reject the transplant. But from the interviews she's given, it seems that she has been happy with the results. The first full facial transplant came in March 2010, when a Spanish man who had accidentally shot himself in the face received a completely new jaw, nose, teeth, cheekbones and skin.
Face transplants can be controversial because some people see them as being done for "cosmetic", rather than purely medical reasons. Yet if you look at the people who have received facial transplants, it's clear that in every case their disfigurement affects their lives in much more than a purely "cosmetic" way. These are people so badly injured that they can no longer eat, drink, or - in some cases - breathe independently. For them, the risk of rejection and of a shortened lifespan due to the immunosuppressant drugs is worth taking in order to have the chance to live a more normal life.
Equally, as the story of Richard Lee Norris shows, even for those who remain independent after injury, the effects of severe facial disfigurement are much more wide-reaching than the purely medical, affecting employment, relationships and simply the ability to leave the house without feeling the need to cover your face. It's difficult for those of us who haven't experienced disfigurement to understand just how significant an impact it can have on people's lives. Obviously, face transplantation is an extreme step and certainly not one which is suitable for most people with serious disfigurement - but it should be available as a last option for those who cannot be treated by other means.
Some doctors have raised concerns over the way these transplants are followed up, suggesting that there should be greater emphasis on psychological analysis of patients, to gain deeper understanding of just how facial transplants affect recipients.
The Guardian has a short history of face transplants here.
Only the 23rd facial transplant ever carried out, the operation was a gruelling 36 hours long; all Mr Norris' facial tissue from the scalp to the back of the neck was completely replaced. As with every transplant, there is a risk of rejection; recipients of face transplants have to take immunosuppressant drugs for the rest of their life, which increase their risk of cancer and infection. The first Chinese recipient of a partial facial transplant, Li Guoxing, died in 2008 just two years after his transplant, when he either stopped taking his immunosuppressant drugs or failed to take them correctly. There is also the potential psychological issue of patients finding it difficult to adjust to their new face; although such transplants don't give the recipient the face of the donor, nevertheless even after the most successful operation they will never regain their appearance from before their injury.
The world's first face transplant came in 2005 in France, on Isabelle Dinoire, whose face was so badly mauled in a dog attack that she was left unable to speak or eat. Dinoire has had problems with her transplant, including kidney failure and two episodes in which her body tried to reject the transplant. But from the interviews she's given, it seems that she has been happy with the results. The first full facial transplant came in March 2010, when a Spanish man who had accidentally shot himself in the face received a completely new jaw, nose, teeth, cheekbones and skin.
Face transplants can be controversial because some people see them as being done for "cosmetic", rather than purely medical reasons. Yet if you look at the people who have received facial transplants, it's clear that in every case their disfigurement affects their lives in much more than a purely "cosmetic" way. These are people so badly injured that they can no longer eat, drink, or - in some cases - breathe independently. For them, the risk of rejection and of a shortened lifespan due to the immunosuppressant drugs is worth taking in order to have the chance to live a more normal life.
Equally, as the story of Richard Lee Norris shows, even for those who remain independent after injury, the effects of severe facial disfigurement are much more wide-reaching than the purely medical, affecting employment, relationships and simply the ability to leave the house without feeling the need to cover your face. It's difficult for those of us who haven't experienced disfigurement to understand just how significant an impact it can have on people's lives. Obviously, face transplantation is an extreme step and certainly not one which is suitable for most people with serious disfigurement - but it should be available as a last option for those who cannot be treated by other means.
Some doctors have raised concerns over the way these transplants are followed up, suggesting that there should be greater emphasis on psychological analysis of patients, to gain deeper understanding of just how facial transplants affect recipients.
 |
| Connie Culp, the first US recipient of a face transplant. |
Monday, 2 January 2012
IMFW: Moral Dilemma
The first Interesting Medical Fact of the Week for 2012 - the first interesting fact for a whole new year - concerns something (or rather, someone) that I've written about before. Highly relevant to the pituitary adenoma theme of this blog, in fact.
In my last post, I mentioned Charles Byrne, the Irish Giant, as he was known in his lifetime, a man who suffered from acromegaly in the 1780s. He was briefly a popular attraction in London before succumbing to alcoholism and dying very young at the age of 22. Although he is probably the most well known, as his skeleton is part of the collection in the Hunterian Museum, there were several well-known Irish giants, all of whom likely suffered from acromegaly, who exhibited themself across Europe at the time.
Byrne's skeleton was preserved against his will; the story goes that he was so keen to avoid his body falling into the clutches of John Hunter, a noted surgeon of the time, that his will requested his friends bury his body at sea in a lead coffin. Hunter managed to get his hands on the body, however, allegedly through bribery.
It's curious how many websites I've found when googling the name "Charles Byrne" which not only fail to mention acromegaly, but fail to mention that Byrne had an illness at all - as though growing to 7'7" is a kind of character flaw which could happen to anybody. His skeleton is still on display to the public at the Hunterian Museum, and around a year ago there was some publicity around some genetic research that has been taking place, looking at a genetic cause for pituitary tumours which recur in families, which identified some modern-day acromegaly patients who may be related to Byrne.
More on that research another day.
Today, the news is that there have been calls for Charles Byrne's skeleton to be removed from display, and buried in accordance with his original wishes. It seems fairly unlikely that this will happen, he's a significant feature of the museum; but it's an interesting debate, and on the whole, I have to say that I would broadly be in favour of allowing him to be buried. It's interesting that the moral debate is still going on, more than two hundred years after his death.
In my last post, I mentioned Charles Byrne, the Irish Giant, as he was known in his lifetime, a man who suffered from acromegaly in the 1780s. He was briefly a popular attraction in London before succumbing to alcoholism and dying very young at the age of 22. Although he is probably the most well known, as his skeleton is part of the collection in the Hunterian Museum, there were several well-known Irish giants, all of whom likely suffered from acromegaly, who exhibited themself across Europe at the time.
Byrne's skeleton was preserved against his will; the story goes that he was so keen to avoid his body falling into the clutches of John Hunter, a noted surgeon of the time, that his will requested his friends bury his body at sea in a lead coffin. Hunter managed to get his hands on the body, however, allegedly through bribery.
It's curious how many websites I've found when googling the name "Charles Byrne" which not only fail to mention acromegaly, but fail to mention that Byrne had an illness at all - as though growing to 7'7" is a kind of character flaw which could happen to anybody. His skeleton is still on display to the public at the Hunterian Museum, and around a year ago there was some publicity around some genetic research that has been taking place, looking at a genetic cause for pituitary tumours which recur in families, which identified some modern-day acromegaly patients who may be related to Byrne.
More on that research another day.
Today, the news is that there have been calls for Charles Byrne's skeleton to be removed from display, and buried in accordance with his original wishes. It seems fairly unlikely that this will happen, he's a significant feature of the museum; but it's an interesting debate, and on the whole, I have to say that I would broadly be in favour of allowing him to be buried. It's interesting that the moral debate is still going on, more than two hundred years after his death.
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