Anyway, next letter was slightly more interesting. It was the notes from the endocrine MDT meeting summarising my 'case'. It began with my overall profile (symptoms and history etc., basically all that was discussed in the first appointment, nothing new), then had the table of results from my dexamethasone blood tests (not that I have the foggiest idea on what half of the hormones do or any idea on what the numbers mean), the measurements of cortisol in my piss (normal person is meant to be under 200 and mine was 2014!), the findings on my MRI (left sided 11mm macroadenoma(!), no pictures though :() and then was what they still need to do ahead of surgery (get my baseline ACTH, Cortisol Day Curve, start me on Metyrapone and CT my adrenals). Lovely. Now I actually know what's going on and I'm finally in the loop!! Even though hearing that despite only 10% of pituitary tumours are over 5mm and mine is 11mm was a bit of a shock, the size of it means that an IPSS test isn't necessary (at least I think/hope not) so now my mind's at ease because I don't have to worry about gross or invasive testing. I've just got to have another scan and have my blood taken a few times. Phew.
So anyway, Monday rolls around. Getting up early really isn't my thing so when I arrived on time (as they had warned me to), and I had to wait an hour and twenty minutes to be seen, I was pissed off. It was an hour and a half I could have spent sleeping, but no I had to listen to an old woman texting reeeeallly slowly on an old school phone with the button sounds turned on. But it was nurse Kemi again and I like her, she's cute. Again, there's not really much to say about what this investigation involves. She put a cannula in my arm and drew my blood 3 times and then said it needed to be taken again in 2 hours, then 2 hours after that, then 2 hours after that and then I could go home. I was allowed to do whatever the hell I wanted in the time being (within reason), providing I was in the PIU at those times. ... but there is fuck all to do in Denmark Hill so looks like I'll just set up camp here. At first she gave me a bed, in which I thought 'fantastic! 6 hours more of sleep' but swiftly after I'd just taken my shoes off another nurse came in with a clipboard and claimed the bed. I was relegated to a chair. Cheers. To be fair it was a pretty slick chair though, it reclined and everything. Although it was on wheels and when I clicked the recliner button and the front flipped out it was so powerful that I slid across the floor and into the curtain. And to make matters worse, I was on my own so I didn't even have anyone to laugh about it with. I just had to get up and wheel it back to the wall while everyone else watched.
Yeah, so the day consisted of me watching Breaking Bad in a recliner chair. Pretty boring. There was a woman next to me though, in for her pre-op assessment and she had Cushing's too. Seeing as the only form of privacy was a thin blue curtain between each patient I was able to hear all the things she was discussing with her doctor. She was quite a bit older than me, maybe in her 50s and the list of illnesses and problems she's had throughout her life associated with Cushing's was scary! She was telling the doctors how she suffers so badly with Osteoporosis to the point where she currently has a fractured spine, has had to have hip replacement surgery and had to leave her job because she is no longer able to do even the smallest thing, like lift a box, without the risk of her bones snapping. She's also developed type 2 diabetes, has to be on medication for depression and has a whole load of heart conditions. She's been diagnosed and had to deal with all of these things throughout her life but only now has she discovered that they're actually all a result of this one thing. It was quite sad to know that it had gone so long undetected that the excess cortisol has damaged her mind, bones and organs to the point of no return. I hope and pray I'm lucky and young enough to ping back from any damage that my 11mm guest has slowly been doing on the sly.
Anyway, so my six hours was up and I was sent on my merry way with 336 capsules of Metyrapone to last me the next couple months. They said I should start meds tomorrow and they'll call me to arrange a date for another Cortisol Day Curve within the next month to check the dose they've prescribed is having the right effects on me, but that's all. I have to take 2 capsules 3 times a day, 6-8 hours apart, with food. How inconvenient and annoying. I hate eating in the morning but if I eat and take my first dose too late, it means I have to wait and eat and take my last dose even later at night... Kemi suggested 8am, 2pm, 8pm.
...I suggested 10am, 4pm, 10pm. But come on! Who eats at any of those times? I've only been on it for three days and I'm already struggling. Because I can't bring myself to eat properly in the mornings, when I've been having food for the first dose it's only small. But that then means that I can't wait six hours to have my lunch, so I have lunch and then have to have a snack when it gets to dosage time. But when it's snack time I'm still full from lunch so I have to argue and force myself to eat like I'm some sort of child. And dinner...... it's the same bloody situation! If I'm not eating dinner with friends, I'm eating dinner with my family. They don't have to revolve when they eat around the schedule of my meds! So I tend to have dinner before my last dosage time and have to eat another snack when the six hours is up. Looks like I'm gonna have to be snack queen and pile on a couple more thousand pounds ahead of surgery. ...That or vomit when I take my pills... maybe I'll see how bad it really is taking them without food and decide. They have been making me feel super light headed and dizzy for about half an hour when I initially take them, like my mind is 5 seconds behind my body, and then just averagely light headed and dizzy for about an hour after that though, so that mixed with vomit doesn't sound like something I'm raring to dip my feet into.... Haven't got the shits though! WIN!
So anyway, Monday rolls around. Getting up early really isn't my thing so when I arrived on time (as they had warned me to), and I had to wait an hour and twenty minutes to be seen, I was pissed off. It was an hour and a half I could have spent sleeping, but no I had to listen to an old woman texting reeeeallly slowly on an old school phone with the button sounds turned on. But it was nurse Kemi again and I like her, she's cute. Again, there's not really much to say about what this investigation involves. She put a cannula in my arm and drew my blood 3 times and then said it needed to be taken again in 2 hours, then 2 hours after that, then 2 hours after that and then I could go home. I was allowed to do whatever the hell I wanted in the time being (within reason), providing I was in the PIU at those times. ... but there is fuck all to do in Denmark Hill so looks like I'll just set up camp here. At first she gave me a bed, in which I thought 'fantastic! 6 hours more of sleep' but swiftly after I'd just taken my shoes off another nurse came in with a clipboard and claimed the bed. I was relegated to a chair. Cheers. To be fair it was a pretty slick chair though, it reclined and everything. Although it was on wheels and when I clicked the recliner button and the front flipped out it was so powerful that I slid across the floor and into the curtain. And to make matters worse, I was on my own so I didn't even have anyone to laugh about it with. I just had to get up and wheel it back to the wall while everyone else watched.
Yeah, so the day consisted of me watching Breaking Bad in a recliner chair. Pretty boring. There was a woman next to me though, in for her pre-op assessment and she had Cushing's too. Seeing as the only form of privacy was a thin blue curtain between each patient I was able to hear all the things she was discussing with her doctor. She was quite a bit older than me, maybe in her 50s and the list of illnesses and problems she's had throughout her life associated with Cushing's was scary! She was telling the doctors how she suffers so badly with Osteoporosis to the point where she currently has a fractured spine, has had to have hip replacement surgery and had to leave her job because she is no longer able to do even the smallest thing, like lift a box, without the risk of her bones snapping. She's also developed type 2 diabetes, has to be on medication for depression and has a whole load of heart conditions. She's been diagnosed and had to deal with all of these things throughout her life but only now has she discovered that they're actually all a result of this one thing. It was quite sad to know that it had gone so long undetected that the excess cortisol has damaged her mind, bones and organs to the point of no return. I hope and pray I'm lucky and young enough to ping back from any damage that my 11mm guest has slowly been doing on the sly.
Anyway, so my six hours was up and I was sent on my merry way with 336 capsules of Metyrapone to last me the next couple months. They said I should start meds tomorrow and they'll call me to arrange a date for another Cortisol Day Curve within the next month to check the dose they've prescribed is having the right effects on me, but that's all. I have to take 2 capsules 3 times a day, 6-8 hours apart, with food. How inconvenient and annoying. I hate eating in the morning but if I eat and take my first dose too late, it means I have to wait and eat and take my last dose even later at night... Kemi suggested 8am, 2pm, 8pm.
...I suggested 10am, 4pm, 10pm. But come on! Who eats at any of those times? I've only been on it for three days and I'm already struggling. Because I can't bring myself to eat properly in the mornings, when I've been having food for the first dose it's only small. But that then means that I can't wait six hours to have my lunch, so I have lunch and then have to have a snack when it gets to dosage time. But when it's snack time I'm still full from lunch so I have to argue and force myself to eat like I'm some sort of child. And dinner...... it's the same bloody situation! If I'm not eating dinner with friends, I'm eating dinner with my family. They don't have to revolve when they eat around the schedule of my meds! So I tend to have dinner before my last dosage time and have to eat another snack when the six hours is up. Looks like I'm gonna have to be snack queen and pile on a couple more thousand pounds ahead of surgery. ...That or vomit when I take my pills... maybe I'll see how bad it really is taking them without food and decide. They have been making me feel super light headed and dizzy for about half an hour when I initially take them, like my mind is 5 seconds behind my body, and then just averagely light headed and dizzy for about an hour after that though, so that mixed with vomit doesn't sound like something I'm raring to dip my feet into.... Haven't got the shits though! WIN!
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