What's wrong with me?!
Discussion
KTF said:
E65Ross said:
Back now. That was a piece of piss.. Only took 15 mins!
Do you get a book of 'recipes' to use with it or do they just point to the blender?Reasonably productive evening.... Learned how to use the feed machine that I'll be going home with.... Piece of cake really. Also had the speaking valve fitted to my trachy and it's much more difficult to breathe out with that than the other thing they give you.... They said to just use it for an hour at a time and build up. My family and also the SALT person said my speech is more clear now than before the trachy, and that the trachy makes no difference to speech.... The implies my tongue is moving a bit better.... Confirmed by the fact I can now JUST about lift my tongue high enough so they can fit the thermometer under it now.
Progress feels slow but I do keep getting told it's being quick.
Nurse here very impressed with my progress and how quickly I'm taking things on board and my attitude towards this and my desire to learn.... It's more the fact I just want to go home now! She's also rather tasty if I may say so!
I'm shattered now so off to sleep.
Edit - lots of people keep saying they're proud, I'm doing so well and coping amazingly, I'm being inspirational etc but I'm not exactly sure why? How would others be? I've had my moments, mostly in the 1st week but now I don't see how moping is going to help, this has happened, it's s
t but I need to deal with it. Do I want to get better? Bloody right.... So may as well take things on board and try.
Progress feels slow but I do keep getting told it's being quick.
Nurse here very impressed with my progress and how quickly I'm taking things on board and my attitude towards this and my desire to learn.... It's more the fact I just want to go home now! She's also rather tasty if I may say so!
I'm shattered now so off to sleep.
Edit - lots of people keep saying they're proud, I'm doing so well and coping amazingly, I'm being inspirational etc but I'm not exactly sure why? How would others be? I've had my moments, mostly in the 1st week but now I don't see how moping is going to help, this has happened, it's s
t but I need to deal with it. Do I want to get better? Bloody right.... So may as well take things on board and try. SydneyBridge said:
You must be feeling a bit better when you start to notice how attractive the nurses are..
Some of them are really nice!! Updates for this morning....
Feeling a bit better still. Stomach peg seems easy enough to care for and at rest there is no discomfort. On deep breathing in there is some marked discomfort over the insertion point but I'm sure I'll cope. Saw the physios and walked up some steps and back down. They were happy to take my crutches away and said keep doing what I'm doing because I'm doing really well and they are happy to not see me again unless I need it.
My calves are stiff as f
k so been doing a few stretches. Went to go to the shower but it's bloody occupied so I'll try again in a bit. st nights sleep last night so think after the shower I'll get some more sleep. Haven't had a s
t since Saturday and dietician put me on a higher fibre feed.... Too bad the fking nurse didn't put it up last night so hopefully that'll help. Also had some laxatives this morning.... Speech valve went in yesterday and felt uncomfortable after a few mins, but this morning I had it in from 8-10 and wasn't too bad. Speech also seems a touch better.
AppaaApparenthey will have to change the trachy tube type before I go home, and being Xmas and boxing day I'm now doubtful of a new year return but we'll see. I suppose 1 benefit of staying here longer I'd that when I do go home I know I'll definitely be ok...
As ever, will keep you posted.
See.... All this stuff, you wouldn't get it anywhere else except PH (or perhaps mumsnet).
BlackVanDyke said:
You're gonna feel like some fker's punched you hard in the stomach when your new PEG's in. Surgeon never warned me, but it gets better really fast afterwards - you'll be able to forget it's there in a couple of days.
Keep going matey.
You weren't wrong. Just went for a 10-15min walk and added a couple of flights of stairs in too and that peg started fker's punched you hard in the stomach when your new PEG's in. Surgeon never warned me, but it gets better really fast afterwards - you'll be able to forget it's there in a couple of days. Keep going matey.
king killing me! Guess I'll just do a shorter walk later and take it easier. Lots of visitors later and my brother (coming in 4-8) is bringing a few board games which will be good. I can't take a full deep breath in without the peg being quite sore which isn't ideal when I need to cough with relative frequency!
Feeling in the wars but I know I'm more than over the worst of it so I must keep positive!
I'm in a right state now i know but looking back I was a right mess 3 weeks ago. Cannot believe it's day 24 now. The days seem to be passing a bit quicker now. In icu visiting was 10-8 and I was basically a cabbage. Now visiting is 3-8 but I've got a bit of a routine (ish) now..... Get up around 9, nebulise myself, by the time I then get a few drugs down me, my night feed had finished and I have a shower usually around 10. Finish that and get back, go for a walk it's about 11,quick nap for an hour or so and then maybe another walk, feed my self etc, have another nap and it's almost visiting time. After that I'm pretty much ready for bed so the time goes quicker here I think.
Sucks being here over Xmas but I'm not a massive Xmas person anyway. I don't even celebrate new year, the reason I want out by new year is because I didn't want to spend over a month here but we'll see.
Been a mixed bag at home. Seem a little bit more dizzy and still have the headache when I cough or sit for two long so I'll mention that when I go back to the hospital in a minute.
Has been nice to be home but I had to lie down a lot and couldn't enjoy myself as much as if have liked.
Because I hadn't been to the loo from ages I managed to get some all-bran with milk and water mixed in a blender shoved down my tube got extra fibre
Oh well, 5 mins and time to get packed up to go back. I still haven't showered and need to shave when I get back too it now it's visiting hours so I'll still be quite busy.
Struggling to get some actual sleep at the moment too, it's largely just shut eye.
Has been nice to be home but I had to lie down a lot and couldn't enjoy myself as much as if have liked.
Because I hadn't been to the loo from ages I managed to get some all-bran with milk and water mixed in a blender shoved down my tube got extra fibre
Oh well, 5 mins and time to get packed up to go back. I still haven't showered and need to shave when I get back too it now it's visiting hours so I'll still be quite busy.
Struggling to get some actual sleep at the moment too, it's largely just shut eye.
motco said:
Ross, I might have missed it if you said already, but what did the path lab make of the tumour? Have they pronounced on its grade and ability to invade/malignancy? Will they be carrying out any post-op treatment: radiotherapy, chemo, etc?
Hi, It was a grade 2 ependymoma, approximately 20% chance of recurring.
Slept a bit better last night. Purely shut eye from 7-9pm, think I got to sleep around 10pm, woke up about 4am, back to sleep around 5ish and up at 6:30 and here I am now. Quite tired still but may just get shut eye until 8 then get up. They're letting me out on day release again so being picked up at 10am. I didn't shower yesterday so feel a bit icky now. Thing is that things the so long these days. Getting up and out of bed isn't 2 second job at the moment
I was feeling a bit rough last night after a seemingly worse day but before my dad left we went for a walk which seemed ok which perked mind up a bit.
Today I'm going back home and the plan is to relax, i think we're going to try and play a board game like ludo... See how I feel... And get some rest too.
Fishtigua said:
If you're feeling a tad rough it means the old body is working for a living, all good in the end.
Ludo, ruddy Ludo? Can't stand it. Much prefer Naked Twister, though that doesn't work so well with family members.
Hope you have a great day.
I don't think twister would work too well with me with me either right now Ludo, ruddy Ludo? Can't stand it. Much prefer Naked Twister, though that doesn't work so well with family members.
Hope you have a great day.
I love monopoly but I think it'd be a bit much on the old brain right about now! I'm tempted to get up now, have a shower, pack my stuff up and then try and get more shut eye before I get picked up....
Yesterday was a generally good day, probably the best so far. Comfortably did the most walking and balance wasn't too bad. I was given more day leave and I believe that's set to continue until I get discharged.
My dad collected me at 10am and we went for a spin in his M6 which was great fun. My brother and his partner were down and a few of us played a board game which was so good fun. My only problem was my stomach peg was hurting quite significantly yesterday when I laughed, coughed, stood up straight or took a deep breath in but after some rest it did settle down.
I slept for a good 5-6 hours but I'm currently awake at 4am now.
I also walked, with my dad, back to neuro icu and saw some of the lovely drs and nurses who cares for me when I was basically a cabbage and they were amazed with my progress. The Dr said the thing with neurological injuries like this is.... Time. He said be patient and it'll come.
Only thing stopping me coming home now is when the Dr's are convinced by the nurses/sister that I'm capable of caring for my trachy. Well, this evening was a good step forward because a nurse saw me change my own dressing and clean the inner tube/canula and she said she'd write in the notes I'd done it independently.... So that's a big step!
This thread has truly helped keep me going I think. It has allowed me to vent any of my issues, frustrations etc as well as the good things, had yielded some great advice as well as an awful lot of friendliness between, effectively, total strangers. One of the reasons I absolutely love pistonheads.
SureI'll be back later
Best regards
Ross
My dad collected me at 10am and we went for a spin in his M6 which was great fun. My brother and his partner were down and a few of us played a board game which was so good fun. My only problem was my stomach peg was hurting quite significantly yesterday when I laughed, coughed, stood up straight or took a deep breath in but after some rest it did settle down.
I slept for a good 5-6 hours but I'm currently awake at 4am now.
I also walked, with my dad, back to neuro icu and saw some of the lovely drs and nurses who cares for me when I was basically a cabbage and they were amazed with my progress. The Dr said the thing with neurological injuries like this is.... Time. He said be patient and it'll come.
Only thing stopping me coming home now is when the Dr's are convinced by the nurses/sister that I'm capable of caring for my trachy. Well, this evening was a good step forward because a nurse saw me change my own dressing and clean the inner tube/canula and she said she'd write in the notes I'd done it independently.... So that's a big step!
This thread has truly helped keep me going I think. It has allowed me to vent any of my issues, frustrations etc as well as the good things, had yielded some great advice as well as an awful lot of friendliness between, effectively, total strangers. One of the reasons I absolutely love pistonheads.
SureI'll be back later
Best regards
Ross
IforB said:
Great news Ross. You really are doing brilliantly.
They're always going to be paranoid about you being able to look after the Trach and Peg sites, simply because of the risk of infection and other complications. I've never had either myself, but I know plenty who have had them and the care of them has to be scrupulous from what I've seen.
You are making great leaps forwards and once you get home, then if your experience is anything like mine, your pace of recovery seems to double when you're home. It must be to do with being more relaxed.
Well done and keep up the good work. Oh and more info on the M6, I do have a soft spot for them as they are really quite silly. Which in my book is a very good thing!
Bought just over a year ago with less than 1500 on the clock. Sakhir orange with full, extended black leather interior (so that includes the dash board etc), bang and olufsen stereo (about £3500 option.... It's amazing!), it's almost fully specced except it's not got carbon brakes and isn't a CP car. It's an awesome GT car and really rather rapid. They're always going to be paranoid about you being able to look after the Trach and Peg sites, simply because of the risk of infection and other complications. I've never had either myself, but I know plenty who have had them and the care of them has to be scrupulous from what I've seen.
You are making great leaps forwards and once you get home, then if your experience is anything like mine, your pace of recovery seems to double when you're home. It must be to do with being more relaxed.
Well done and keep up the good work. Oh and more info on the M6, I do have a soft spot for them as they are really quite silly. Which in my book is a very good thing!
Oddly, I have no interior pics! I'll get some soon. Anything else you'd like to know?
SpeckledJim said:
E65Ross said:
The greeny-blue mazda was replaced earlier this year with the S5 cab. The S5 is the V6 turbo one. Nice enough but the interior is a bit disappointing (though a nice colour combo.... Half black/red leather) but it should be a coupe and not dull white. My old man bought it for the Mrs as that's what she wanted. It's quite quick but not my cup of tea, dad doesn't like it much either.... Different kettle of fish I guess but much preferred his E92 M3 he had before which you could easily get for the £30k or so he spent on the S5.
Salgar said:
E65Ross said:
This was my bedside view last night... Amazing or what!
What is the thing that looks like a sponge dildo?Some of the nurses are rather tasty I must say!
Some of the people in my ward are lovely, some less so. Trouble is I can't really talk much at the moment anyway!
Thanks, makes me feel much better.... There's always someone worse off
Back home again and watching sky sports, the Saints Chelsea match. Managed my first semi decent length walk outside.... Walk round "the block" which is a little over 0.4 miles. I did some walking at hospital earlier and I'll do more tonight too.
Legs still feel like jelly but I think that's just total loss of muscle bulk and that's going to take weeks of regular walking to sort.
For now it's hard to get into a proper routine with being able to come home, not being able to, waiting for nurses to do stuff etc etc but for when I'm back I've drafted up a list of various arm exercises with light weights (eg bicep curls, upright rowing etc), core stability (eg planks and side planks, quadruped exercises etc), leg work (eg squats, calf raises etc) which I can make sure I do once discharged.
My only issue now is, where I'm nearing discharge, is what happens with speech and language therapy. I need to ask because these are the guys who not only help with speech, but also determine my swallow ability and when I can get back to drinking fluids and, hopefully eventually, solids.... So ultimately they determine when this trachy and stomach peg come out. I'm hoping for something simple like once a week outpatient appointments....om sure you'll agree that it's absurd I should stay in hospital 24/7 to wait for 1 appointment per week which lasts around 5 mins. One of the main nurses thinks I'm good to go home myself now, and she's written that in the notes I believe. Just need to wait to hear what happens about speech and language. My swallow also appears to be JUST beginning to taks a small amount of saline down. At this rate I could potentially be drinking fluids in January.... But who knows, progress may slow and so on
Stomach peg is also still really quite painful today. Dr had a quick look and listen with a stethoscope and said not to worry all seems ok but, as already said, I can't take a deep breath in, laugh, stand up straight and coughing really hurts.
Will be aiming to get back to hospital around 5pm. I'm being moved to a more quiet bay tonight, same ward though so that'll be nice. I hope it's the same staff because I think the current staff are brilliant.
Coming back home and seeing my car is also both quite nice and depressing.... It's something to look forward to, but I know I won't be able to for ages. I was contemplating either SORN'ing it or selling but, even though it'll cost a lot, I think I'll keep it insured and get a friend or family member to drive it once per week for a good 20-30 miles, mostly motorway miles. I have a very good battery charger but it's quite large and I have no garage. Ideally I'd have the car in a garage with the charger in 24/7....but the battery in very hidden in the boot so it's charged under the bonnet which means the bonnet needs to be left ajar and I'd need an extension lead going to the car.... I can't leave the charger and extension lead outside so I think I'll just see about plugging the charger in for a good few hours once or twice a week.... What do we think of that?
Ross
Back home again and watching sky sports, the Saints Chelsea match. Managed my first semi decent length walk outside.... Walk round "the block" which is a little over 0.4 miles. I did some walking at hospital earlier and I'll do more tonight too.
Legs still feel like jelly but I think that's just total loss of muscle bulk and that's going to take weeks of regular walking to sort.
For now it's hard to get into a proper routine with being able to come home, not being able to, waiting for nurses to do stuff etc etc but for when I'm back I've drafted up a list of various arm exercises with light weights (eg bicep curls, upright rowing etc), core stability (eg planks and side planks, quadruped exercises etc), leg work (eg squats, calf raises etc) which I can make sure I do once discharged.
My only issue now is, where I'm nearing discharge, is what happens with speech and language therapy. I need to ask because these are the guys who not only help with speech, but also determine my swallow ability and when I can get back to drinking fluids and, hopefully eventually, solids.... So ultimately they determine when this trachy and stomach peg come out. I'm hoping for something simple like once a week outpatient appointments....om sure you'll agree that it's absurd I should stay in hospital 24/7 to wait for 1 appointment per week which lasts around 5 mins. One of the main nurses thinks I'm good to go home myself now, and she's written that in the notes I believe. Just need to wait to hear what happens about speech and language. My swallow also appears to be JUST beginning to taks a small amount of saline down. At this rate I could potentially be drinking fluids in January.... But who knows, progress may slow and so on
Stomach peg is also still really quite painful today. Dr had a quick look and listen with a stethoscope and said not to worry all seems ok but, as already said, I can't take a deep breath in, laugh, stand up straight and coughing really hurts.
Will be aiming to get back to hospital around 5pm. I'm being moved to a more quiet bay tonight, same ward though so that'll be nice. I hope it's the same staff because I think the current staff are brilliant.
Coming back home and seeing my car is also both quite nice and depressing.... It's something to look forward to, but I know I won't be able to for ages. I was contemplating either SORN'ing it or selling but, even though it'll cost a lot, I think I'll keep it insured and get a friend or family member to drive it once per week for a good 20-30 miles, mostly motorway miles. I have a very good battery charger but it's quite large and I have no garage. Ideally I'd have the car in a garage with the charger in 24/7....but the battery in very hidden in the boot so it's charged under the bonnet which means the bonnet needs to be left ajar and I'd need an extension lead going to the car.... I can't leave the charger and extension lead outside so I think I'll just see about plugging the charger in for a good few hours once or twice a week.... What do we think of that?
Ross
Already notified insurance and DVLA. DVLA contact my consultant and they talk it out.
I'm not using the car but I'll keep it insured, I'll have to let them know I'll have a friend drive it.... Who knows, because I'm not driving and it'll he used so infrequently my premium may go down and I'll get some money back!
I'm not using the car but I'll keep it insured, I'll have to let them know I'll have a friend drive it.... Who knows, because I'm not driving and it'll he used so infrequently my premium may go down and I'll get some money back!
Trachy tube just been changed, apparently the speech people are doing a swallow test approx 3pm
So no going home today but it's another step towards going home.
Nurse said she's sent forms off to district nurse but due to bank holiday that may not get it until next week "but that won't stop me going home soon, they just need to send me home with a weeks supply of stuff instead"
Looks like discharge is getting imminent and I can start the proper recovery.
My parents coming in to visit at 3.im just going for a short walk and then possibly some shut eye. I'm not especially tired but it'll kill some time!
So no going home today but it's another step towards going home.
Nurse said she's sent forms off to district nurse but due to bank holiday that may not get it until next week "but that won't stop me going home soon, they just need to send me home with a weeks supply of stuff instead"
Looks like discharge is getting imminent and I can start the proper recovery.
My parents coming in to visit at 3.im just going for a short walk and then possibly some shut eye. I'm not especially tired but it'll kill some time!
Swallow test done.... Was more than just swallow though! Camera down my nose for a good 20+ mins. 1 vocal cord paralysed but the other doing a sterling job at compensating.
Swallow definitely improving but reduced movement of palate and tongue.... And, well, just about everything. They got me to swallow a tea spoon of thick milkshake and also some milk. It's not going down windpipe but very close to, but when it gets close I'm coughing it up and they're pleased with my cough.
I'm now to swallow 3 teaspoons of water 5x per day, purely as a training exercise. Also been given some other palate exercises etc. So.... Promising signs I suppose.
Swallow definitely improving but reduced movement of palate and tongue.... And, well, just about everything. They got me to swallow a tea spoon of thick milkshake and also some milk. It's not going down windpipe but very close to, but when it gets close I'm coughing it up and they're pleased with my cough.
I'm now to swallow 3 teaspoons of water 5x per day, purely as a training exercise. Also been given some other palate exercises etc. So.... Promising signs I suppose.
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