I've been signed of work until the 3rd March... 2009. Yippee thanks docs for a small paperwork issue that will of course cause havoc.
The exit from the hospital was in fact chaos. Originally I was supposed to leave in the morning, then they said 14.00h, so I could get to see the re-education lady in the morning; I arranged the taxi-ambulance for 14.00, but my paperwork wasn't ready, so I re-arranged for 15.00, but had to phone them at 10 to, because my paperwork wasn't ready... finally left at 16.30.
The paperwork was a set of prescriptions for the nurse, to know what dressings I needed, and for the medical product providers (goo, goo machine, dressings, etc.); my sick note (for the wrong year as mentioned above); my travel note, to cover the cost of the taxi-ambulance; and an exit-note. Once I finally had all that, I could go downstairs to the Exits Office, hand them my exit note and get another sort of exit note. Luckily I didn't have to pay anything, I believe they do all that directly with the social and the insurance.
I was not given any prescription for pain killers, acid reflux control, vitamins, iron supplement, sleeping tablets or sedatives, all of which I was being systematically given in hospital. Vitamins, obviously I can do them! OK, the sedatives I have, my happy bunny pills of which I take a quarter occasionally, just takes the edge off; the sleeping tablets I really can't carry on taking, been almost 2 months, so I use a quarter happy bunny just to help me drop off. Most definitely not so effective, but I am sleeping much better, so I'm sure it's adequate. Have started waking up in the small hours again though.
However, all the rest - I am quite shocked actually. The acid reflux control is important - the acid (bile and gastric juices) coming up into the throat can actually harm it, and can even be one of the causes of cancer; additionally, it can cause oesophageal damage, a complication not desirable right now thank you. I get acid reflux quite a lot, so it really needs something. They were also giving me iron supplement because I am a bit anaemic. Anything that weakens you is a no-no.
So must get to see the doctor.
November 30, 2009
The goo tube, weight, nutrition
Goo-tube details as per request from Rachel - again, faint-hearted abstain.
The tube goes in just below the left rib cage. I'm not sure how much of it there is in there - probably quite a lot, I know I was amazed at how far my nose tube went when I had my little spat and tried to pull it out... There is a clip thing that you can open/close that covers the actual hole - when the clip is open you can move it on the tube so that you can clean the entry point. This is currently still being done my the nurse, because it was inflamed and still is rather. This also allows you to... eeeesh.... 'mobilise the tube' - pull it in and out a bit - to make sure it doesn't stick... sorry... I don't like that bit at ALL - but it'll be fine once it's healed up properly. At that time, it will just be open to the air, not dressed at all, and I will just clean it with gentle soap and water, put baby bottom cream on it and close the clip. Not quite at that stage yet, it makes me go all eugh.
Apparently it is ante-deluvian equipment - because it's a public hospital, they have the cheapest type. Modern ones, you just have a sort of button over the hole that you clip the actual but on/off, so you don't wander around with tubey-bits hanging around and getting in the way - the external bit of the tube, including attachments, is about a foot long. So it's really not conducive to sun-bathing.
I will have the goo tube until some time (not known) after my radio therapy is completed; apart from re-education needs, I have been firmly warned that my throat is really going to hurt from about week 3 of radiotherapy, and I will have trouble swallowing, so that is principally why I have it: it is really important to make sure I don't lose too much weight, so nutrition by whatever means is vital. Will be getting some high protein drinks too I think, to help me now. I try to eat-eat as it were, but it's really hard - stuff sort of gets lost in the mouth, you have to be so careful not to swallow wrong, it's slow, everything gets cold and since I can only eat mush if at all, it's boring... except for Danone caramel deserts, I have a real craving for them, and that sort of thing stays together in the mouth and slips down easily.
I lost 4kgs in 3 weeks, so obviously I have to slow the weight loss down. Ideally I don't want to go under 60kg (so ok I still have PLENTY of leeway!! I'm at 67kg approx.).
The tube goes in just below the left rib cage. I'm not sure how much of it there is in there - probably quite a lot, I know I was amazed at how far my nose tube went when I had my little spat and tried to pull it out... There is a clip thing that you can open/close that covers the actual hole - when the clip is open you can move it on the tube so that you can clean the entry point. This is currently still being done my the nurse, because it was inflamed and still is rather. This also allows you to... eeeesh.... 'mobilise the tube' - pull it in and out a bit - to make sure it doesn't stick... sorry... I don't like that bit at ALL - but it'll be fine once it's healed up properly. At that time, it will just be open to the air, not dressed at all, and I will just clean it with gentle soap and water, put baby bottom cream on it and close the clip. Not quite at that stage yet, it makes me go all eugh.
Apparently it is ante-deluvian equipment - because it's a public hospital, they have the cheapest type. Modern ones, you just have a sort of button over the hole that you clip the actual but on/off, so you don't wander around with tubey-bits hanging around and getting in the way - the external bit of the tube, including attachments, is about a foot long. So it's really not conducive to sun-bathing.
I will have the goo tube until some time (not known) after my radio therapy is completed; apart from re-education needs, I have been firmly warned that my throat is really going to hurt from about week 3 of radiotherapy, and I will have trouble swallowing, so that is principally why I have it: it is really important to make sure I don't lose too much weight, so nutrition by whatever means is vital. Will be getting some high protein drinks too I think, to help me now. I try to eat-eat as it were, but it's really hard - stuff sort of gets lost in the mouth, you have to be so careful not to swallow wrong, it's slow, everything gets cold and since I can only eat mush if at all, it's boring... except for Danone caramel deserts, I have a real craving for them, and that sort of thing stays together in the mouth and slips down easily.
I lost 4kgs in 3 weeks, so obviously I have to slow the weight loss down. Ideally I don't want to go under 60kg (so ok I still have PLENTY of leeway!! I'm at 67kg approx.).
Not blogging am I
Back home and really don't feel like saying anything... have a nice nurse who visits daily for my dressings... not eating well, so doing goo... felt a bit more energetic today and actually did some housework... and got agreement with L today to get some hours from the lady who does the cleaning in the flat upstairs thank God. Desperately overdrawn because of dental cleaning process which was the 1200€ I wanted to get refunded and thought my insurance had agreed but the money has not been forthcoming and I also paid my nephew 1000€ now I have cheques bouncing - stupidly, I changed my branch from the Espé one to one here just before going into hospital, the Espé one would not have done this and if they couldn't get hold of me they'd have talked to my mum and understood; my new branch of course don't know me from Adam and have just baulked. I have to go see the buggers, also the doctor, but didn't get it together to call either of them today. They were changing our windows - taking out the 1970s wood ones and putting in nice new plastic double glazed white ones - no not my normal taste but in a standard flat, they are GREAT, makes a real difference to the heating and the place looks soooooooooo much brighter. But it was difficult today while they were putting them in - I had to move from room to room desperately trying to keep warm. November is not the best month to do that sort of work in - I bet the lads doing it were freezing, but I'm far too selfish to have spent any time checking on them, I'm afraid!!
November 24, 2009
Oh and by the way
I'm out on Thursday! Hospital assures me they will arrange for goo machine etc, I just need to take my lovely flowers. The amarylis my ma gave me is STUNNING
Oh how goomusing
This space goo malarky takes some getting used to. I am improving, but it is still a constant chore. It is sticky stuff, and stains, so if you do drip it or squirt it or whatever anywhere, it is unpleasant to clean up. It gets quite complex sometimes (alright, it may not sound complex, but in my current small universe it's VERY complex), having to switch between medication, hot chocolate and goo, and trying to stay clean at the same time.
Medication and hot chocolate are syringe-applied. To continue in my usual line of assuming you all have strong stomachs and want to know the gory details, the stomach thing has a length of tube sticking out, with some attachments on the end that let you screw bits in or stick other bits in. On the tube you have a small plastic clamp. This you have to remember to do up or undo, in order to allow matter in and, most importantly, to stop it all coming OUT again. That is the really fun bit. The other day was feeling a little bit down - washed, did my hair, put on a nice clean nightie to perk myself up, did my medication (crushed in water, syringed into tube) then my hot choccy (which is also syringed in and really just for the smell). For whatever reason, even though I clamped the clamp, the hot choccy did not want to stay in, and I had a devil of a time not chocolating myself all over. They onto brekkers proper, yummy, fibre goo. This time I forgot to clamp the clamp when I was attaching myself, and my clean nightie became a thing of nightmares. Me floods of tears.
I stamped my feet at myself a few times to stop myself being pathetic, washed it as best I could (without getting the wrist dressing wet...) and put it on the radiator to dry. OK, OK, I had another one. It's just that... it's so sticky and it has this particular smell - not unpleasant just... I don't know, particular and it makes me think of hospitals and old people; and I wanted to wear THAT nightie and sometimes it's those little things that just bring one down.
Yesterday I almost managed 4 full packs of goo. I can now do the fibre goo at 250ml/hour, which is around maximum, so one pack takes 2 hours. I can't do the ISO that fast; I tried it last night, and after 2/3s of a pack had to stop, it gives me a bad back. That may sound silly, but I'm sure what I need is for someone to put me over their shoulder and pat/rub my back until I have a jolly good burp, and then it would be all better.
Maybe I can start practising projectile vomit?
Medication and hot chocolate are syringe-applied. To continue in my usual line of assuming you all have strong stomachs and want to know the gory details, the stomach thing has a length of tube sticking out, with some attachments on the end that let you screw bits in or stick other bits in. On the tube you have a small plastic clamp. This you have to remember to do up or undo, in order to allow matter in and, most importantly, to stop it all coming OUT again. That is the really fun bit. The other day was feeling a little bit down - washed, did my hair, put on a nice clean nightie to perk myself up, did my medication (crushed in water, syringed into tube) then my hot choccy (which is also syringed in and really just for the smell). For whatever reason, even though I clamped the clamp, the hot choccy did not want to stay in, and I had a devil of a time not chocolating myself all over. They onto brekkers proper, yummy, fibre goo. This time I forgot to clamp the clamp when I was attaching myself, and my clean nightie became a thing of nightmares. Me floods of tears.
I stamped my feet at myself a few times to stop myself being pathetic, washed it as best I could (without getting the wrist dressing wet...) and put it on the radiator to dry. OK, OK, I had another one. It's just that... it's so sticky and it has this particular smell - not unpleasant just... I don't know, particular and it makes me think of hospitals and old people; and I wanted to wear THAT nightie and sometimes it's those little things that just bring one down.
Yesterday I almost managed 4 full packs of goo. I can now do the fibre goo at 250ml/hour, which is around maximum, so one pack takes 2 hours. I can't do the ISO that fast; I tried it last night, and after 2/3s of a pack had to stop, it gives me a bad back. That may sound silly, but I'm sure what I need is for someone to put me over their shoulder and pat/rub my back until I have a jolly good burp, and then it would be all better.
Maybe I can start practising projectile vomit?
Well if she's going to do it...
Nils just said she can't help it, she's turned into one of those who posts bits of poetry (in this instance I preferred the photo which immediately let me smell that wonderful autumn bonfire smell, but let's face it I was too lazy to read more than the first 3 lines of the poem... sorry 'bout that).
So it made me think, hey, I own this: so I'm going to post a poem and it means I'll retain ownership of it. I THINK. If not well hell it's only another poem that I can't enter into a competition or publish elsewhere or whatever. I just like this one.
Max just did a smelly poo
I’m sure he wasn’t meaning to
Perhaps he has a dicky tum
And probably a quite sore bum
Max did use his litter tray
I’m extremely glad to say
But now there is a nasty niff
The kitchen’s full of horrid wiff
Max just did a smelly poo
And now we’re all suffering, too!
So it made me think, hey, I own this: so I'm going to post a poem and it means I'll retain ownership of it. I THINK. If not well hell it's only another poem that I can't enter into a competition or publish elsewhere or whatever. I just like this one.
Corn Goddess
Weaving, twining her fingers and hands,
Her limbs waving like corn in the wind,
She beckons - come to me, come to me;
I follow, blind, enticed, entranced,
her movements an entrance
to another world, a dance,
divine. Her eyes glisten
as I near her. Her smile lengthens.
A step. Another step. Again, a step.
And then I am surrounded by the wind
and the waving and the weaving; bound
and ensnared. Suddenly,
everything is green.
Her limbs waving like corn in the wind,
She beckons - come to me, come to me;
I follow, blind, enticed, entranced,
her movements an entrance
to another world, a dance,
divine. Her eyes glisten
as I near her. Her smile lengthens.
A step. Another step. Again, a step.
And then I am surrounded by the wind
and the waving and the weaving; bound
and ensnared. Suddenly,
everything is green.
Just in case and because some people have said this stuff is important - I'm a total naive about it - copyright Sian Cooper 2007
And here's one of the fun ones
Max is one of my cats, once upon a time a kitten.
Max just did a smelly poo
I’m sure he wasn’t meaning to
Perhaps he has a dicky tum
And probably a quite sore bum
Max did use his litter tray
I’m extremely glad to say
But now there is a nasty niff
The kitchen’s full of horrid wiff
Max just did a smelly poo
And now we’re all suffering, too!
copyright Sian Cooper 2006
Keep smiling!
November 18, 2009
Tired... but things move on
My parents have been here the last few days, visiting me in the afternoons, plus Lionel of course; a lot of the time they have the joy of watching me sleep - and boy do I drool a lot at the moment!!! - but it's not all fun, they do get to have to converse with me as well, and get thrown out at regular intervals as gaggles of nurses and doctors come in to do unspeakable things to me.
So I had this stomach feeding tube fitted on Monday - no-one told me it REALLY FKING HURTS - but tube came out of nose so voilà I look more like me. They started me on a very slow saline drip feed into it yesterday, and I am on my first spaceman's mush pack as I type. I hope I will stop feeling so tired now I'm getting mushiment again, glucose drips are all very well but after 3 days you feel the need for some decent stomach clogging goo.
They removed the dreaded canula today, I don't know if that's what you call it in English, the tube they put in the hole of the tracheotomy so you can still speak. I now have compressing bandages on the left of my neck but not on the right, because you cannot endanger the graft by limiting the blood flow. Whenever I want to talk, sneeze or cough, I have to put a finger on a particular spot on my neck (marked by an adorable blob of cotton wool), and push up - this is to encourage the hole to stay closed and not to be used as an airflow any more. That is all very well, but I can't bend my right elbow enough to use my right hand to do this, because the veins in my hands gave out last night and they had no choice but to go for inside of elbow as my infusion point, no, I don't know how to say that in English, either! - so I have to use my left hand, but that is the one I use to hang onto my side which hurts when I cough or sneeze... there's no winning this one, I take the pain and scatter saliva liberally around.
They are making an appointment for me with the radio therapist specialist chappy, and they are going to see if my existing portacat actually works or if I'll need it removed and another one put in, please god no. I don't want any more ops right now.
Apparently my tongue graft is beautiful - medics are strange things, nurses say the same things about various other of my wounds - but there is a 'precarious' area in the front, which is pale, indicating insufficient blood flow and possible issue; but it seems to be behaving ok otherwise, so it is just being kept an eye on.
There are rumours of letting me out next week, with home nursing visits. We'll see. Feels a little early to me.
Thank you all for your comments, I'm sure you'll understand if I'm not emailing you personally at the moment, I truly do not have the energy for much stuff at all. But your good wishes really bolster me up.
So I had this stomach feeding tube fitted on Monday - no-one told me it REALLY FKING HURTS - but tube came out of nose so voilà I look more like me. They started me on a very slow saline drip feed into it yesterday, and I am on my first spaceman's mush pack as I type. I hope I will stop feeling so tired now I'm getting mushiment again, glucose drips are all very well but after 3 days you feel the need for some decent stomach clogging goo.
They removed the dreaded canula today, I don't know if that's what you call it in English, the tube they put in the hole of the tracheotomy so you can still speak. I now have compressing bandages on the left of my neck but not on the right, because you cannot endanger the graft by limiting the blood flow. Whenever I want to talk, sneeze or cough, I have to put a finger on a particular spot on my neck (marked by an adorable blob of cotton wool), and push up - this is to encourage the hole to stay closed and not to be used as an airflow any more. That is all very well, but I can't bend my right elbow enough to use my right hand to do this, because the veins in my hands gave out last night and they had no choice but to go for inside of elbow as my infusion point, no, I don't know how to say that in English, either! - so I have to use my left hand, but that is the one I use to hang onto my side which hurts when I cough or sneeze... there's no winning this one, I take the pain and scatter saliva liberally around.
They are making an appointment for me with the radio therapist specialist chappy, and they are going to see if my existing portacat actually works or if I'll need it removed and another one put in, please god no. I don't want any more ops right now.
Apparently my tongue graft is beautiful - medics are strange things, nurses say the same things about various other of my wounds - but there is a 'precarious' area in the front, which is pale, indicating insufficient blood flow and possible issue; but it seems to be behaving ok otherwise, so it is just being kept an eye on.
There are rumours of letting me out next week, with home nursing visits. We'll see. Feels a little early to me.
Thank you all for your comments, I'm sure you'll understand if I'm not emailing you personally at the moment, I truly do not have the energy for much stuff at all. But your good wishes really bolster me up.
November 15, 2009
Look it's me
I'm finally online at hospital, and quite a lot of the time I'm compos mentis enough to update this. Right now, however, is not one of the compos mentis times, or at least I may have some comp but very little ment, so this will be short. I'm doing well. Tomorrow I have a thingy put it so they can feed me through the stomach directly, because I wont be able to ingurge properly during the radio therapy. When I leave here (end Nov ish) I should have 80% swallowing ability. I'm sorry, all that makes me think about is chocolate and tea. It should also mean I have the feeding tube removed from my nose in the next couple of days and soon after that, the tracheotomy. I so look forward to both of those going.
Overall I feel fine, I have my moments, Lionel visits every afternoon plus a few other people have dropped in, I can't talk too long and do tend to start snoring in the middle of other people's sentences, but its great to see them
Thanks to all fr the cards good wishes etc xxxxx
Overall I feel fine, I have my moments, Lionel visits every afternoon plus a few other people have dropped in, I can't talk too long and do tend to start snoring in the middle of other people's sentences, but its great to see them
Thanks to all fr the cards good wishes etc xxxxx
November 3, 2009
Useful fact
It has been determined that the most used sexual position for married couples is the doggie position.
The husband sits up and begs.
The wife rolls over and plays dead.
_____________________________________________________________
Peace and love to all, blimey, I never thought I'd say that!
The husband sits up and begs.
The wife rolls over and plays dead.
_____________________________________________________________
Peace and love to all, blimey, I never thought I'd say that!
November 2, 2009
Oh and - thank you
Thank you to everyone who reads me, comments, mails me, lets me know they care. Every single message of support makes me feel loved and stronger, and I am really touched and grateful.
Hugs to everyone.
Hugs to everyone.
Did I confuse everyone?
With pre-apologies to Steve, Stevie and Chrissie for not being fluffy, funny or filthy enough! I'm afraid this is a very serious issue, and I obviously need psychological assistance. I had to have a conversation with myself today to decide whether to wear and pack the Seriously Big cotton knickers I bought by mistake (honest!) but which are, yes, comfy and warm; or some nice black lacy skimpy things.
You will be relieved to know the lacy ones won.
So - anyway - I'm going in tomorrow (the 3rd) for op in the morning (the 4th) - so in Tuesday for op Wednesday - various seem to think I'm in today for tomorrow - not so fast, Geronimo! (don't know why Geronimo, I've just always been really fond of that name. One day I will have a cat called that. Oscar almost was, but Paul didn't like it).
Had a full day today, including spending an hour on the phone talking my ma through how to install and use YIM. Couple of L's friends (also mine) came over for an hour this afternoon, and this morning I went to the doctor's to get my 100% cover confirmation slip, then to the clinic to ensure they had my cover up to date (wanted my deposit cheque back I had to give them when I had my endoscopy, but the girl couldn't find it; she swears they will post it to me; I told her if they tried cashing it, it would bounce anyway, between paying my nephew and the dentist I'm totally skint); also went to hospital for same reason and to get the sticky labels you need (bar codes, they use them to stick on everything, your bloodtests, your file, your forehead...), so tomorrow I'm able to go straight to the ENT department. I also discovered that the hospital hadn't had the ok from the insurance company for my private room, the insurance company said they had definitely sent the fax, they sent it again... hey ho, all administrations of large institutes are the same everywhere.
Note to self, call insurance co tomorrow to check if they cover the dentist's costs since he's billed them as 'dentures' and if so send tomorrow - it's 1200 euros, I need that money back!!!
Where was I?
OK - so after talking quite a lot today, and being overall jolly, and patient with my dear mama for an hour, my neck is really stressed and hurts, and my head hurts if I try to speak, and I can't think, it is tiring and I feel tearful; so it may sound strange but I really look forward to them taking this bloody thing out. Yes, I'm going to have problems afterwards, yes, I'm going to have to learn to swallow again, yes, I will no doubt consider the scar to be horrific, yes, I will be depressed at times and all sorts, but this thing will have gone.
What's more, I am going to sing again. That I am totally determined about. Ok, it may be with a slight lisp. Let's consider it cute.
You will be relieved to know the lacy ones won.
So - anyway - I'm going in tomorrow (the 3rd) for op in the morning (the 4th) - so in Tuesday for op Wednesday - various seem to think I'm in today for tomorrow - not so fast, Geronimo! (don't know why Geronimo, I've just always been really fond of that name. One day I will have a cat called that. Oscar almost was, but Paul didn't like it).
Had a full day today, including spending an hour on the phone talking my ma through how to install and use YIM. Couple of L's friends (also mine) came over for an hour this afternoon, and this morning I went to the doctor's to get my 100% cover confirmation slip, then to the clinic to ensure they had my cover up to date (wanted my deposit cheque back I had to give them when I had my endoscopy, but the girl couldn't find it; she swears they will post it to me; I told her if they tried cashing it, it would bounce anyway, between paying my nephew and the dentist I'm totally skint); also went to hospital for same reason and to get the sticky labels you need (bar codes, they use them to stick on everything, your bloodtests, your file, your forehead...), so tomorrow I'm able to go straight to the ENT department. I also discovered that the hospital hadn't had the ok from the insurance company for my private room, the insurance company said they had definitely sent the fax, they sent it again... hey ho, all administrations of large institutes are the same everywhere.
Note to self, call insurance co tomorrow to check if they cover the dentist's costs since he's billed them as 'dentures' and if so send tomorrow - it's 1200 euros, I need that money back!!!
Where was I?
OK - so after talking quite a lot today, and being overall jolly, and patient with my dear mama for an hour, my neck is really stressed and hurts, and my head hurts if I try to speak, and I can't think, it is tiring and I feel tearful; so it may sound strange but I really look forward to them taking this bloody thing out. Yes, I'm going to have problems afterwards, yes, I'm going to have to learn to swallow again, yes, I will no doubt consider the scar to be horrific, yes, I will be depressed at times and all sorts, but this thing will have gone.
What's more, I am going to sing again. That I am totally determined about. Ok, it may be with a slight lisp. Let's consider it cute.
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