What's wrong with me?!
Discussion
Have very restless legs t9ni and struggling to sleep.
It's hoped tomorrow I can try t9 to to stand up with a bit of a help!
The nurses here are amazing.... It's very almost 24/7 care.
My chest seems to have stayed clear s9 far so I could be moved from icu within a day or 2. Then the only thing stopping me getting home is no swallow because I can't eat or drink! Tell you what though guys it's been a f
king hard week!
It's hoped tomorrow I can try t9 to to stand up with a bit of a help!
The nurses here are amazing.... It's very almost 24/7 care.
My chest seems to have stayed clear s9 far so I could be moved from icu within a day or 2. Then the only thing stopping me getting home is no swallow because I can't eat or drink! Tell you what though guys it's been a f
king hard week! Some of the nurses are indeed lovely, but what u wouldn't give to get back to being normal again. Hand on heart I wouldn't take £100M pounds and stay like this over just being normal again.
I'm currently wearing an eye patch to help with the diplopia, I have very bad numbness around my legs and, erm, saddle area and can't feel my bits but at least I can go to the loo (with help sadly!).... Hopefully it's just a hell of a lot of swelling and in the coming weeks and months it'll settle.
I'm petrified, truth be told. But that's not to be unexpected I suppose. I would genuinely end it if there is NO further improvements by another month.... But as long as there are changes over time I can look forward.
I'm currently wearing an eye patch to help with the diplopia, I have very bad numbness around my legs and, erm, saddle area and can't feel my bits but at least I can go to the loo (with help sadly!).... Hopefully it's just a hell of a lot of swelling and in the coming weeks and months it'll settle.
I'm petrified, truth be told. But that's not to be unexpected I suppose. I would genuinely end it if there is NO further improvements by another month.... But as long as there are changes over time I can look forward.
Bit pissed off earlier, they seriously fked my feed up, so in 1 week this already skinny person lost 8kgs! I'm well underweight now so that's not going to help recovery.
Saw ent chap who stuck a camera down my nose. 1 of 2 vocal cords not be but suspects it's due to surgery (well, duh). Just saw physios and with a bit of support I walked to the toilet door and have been given permission that I need just one helper to walk me to the loo and also..... A sit down shower!! That'll be heaven! Baby steps, but steps. Just more desperate for the cranial nerve stuff to work again!
ked my feed up, so in 1 week this already skinny person lost 8kgs! I'm well underweight now so that's not going to help recovery. Saw ent chap who stuck a camera down my nose. 1 of 2 vocal cords not be but suspects it's due to surgery (well, duh). Just saw physios and with a bit of support I walked to the toilet door and have been given permission that I need just one helper to walk me to the loo and also..... A sit down shower!! That'll be heaven! Baby steps, but steps. Just more desperate for the cranial nerve stuff to work again!
garyhun said:
Ross, I was in hospital for 3 months many years ago. I broke my neck in a diving accident and had to have bone grafts and a full neck/body brace with halo.
The fist week or so after the operation was awful. My friends and parents thought I'd never be the old Gary ever again.
But you know what? I gradually healed and one day I realised that this week was better than last week. And then next week was better than this.
Over 6 months I eventually got back to 'normal' (although most people who know me would say that was never possible
) and then I looked back and realised that those 6 months, as difficult as they were during the time, were actually the blink of an eye.
Stay strong, stay positive - you'll get through this and then it will become another memory in the rich tapestry of life.
All the best
Gary
3 months, holy moly! I'll pray that doesn't happen to me! My throat and chest were so wheezy I thought fThe fist week or so after the operation was awful. My friends and parents thought I'd never be the old Gary ever again.
But you know what? I gradually healed and one day I realised that this week was better than last week. And then next week was better than this.
Over 6 months I eventually got back to 'normal' (although most people who know me would say that was never possible
) and then I looked back and realised that those 6 months, as difficult as they were during the time, were actually the blink of an eye.Stay strong, stay positive - you'll get through this and then it will become another memory in the rich tapestry of life.
All the best
Gary
k it, let's get some out....lied in my side and took loads of deep breaths and hunked a surreal amount of green (luckily not brown) phlegm was, quite frankly, heroicDid the same in the other side and same result... Did flat on my back too. Airways still not right but they are feeling so much better refreshed. Time for a sleep before the xray.
I'm on antibiotics so definitely an infection there but.... I was on antibiotics when I was in icu which cleared it up, but what's to say it won't just come straight back again?
Otherwise my balance seems MARGINALLY better today perhaps. Walked to the shower and had a sit down shower.... fk me do you take running hot water for granted! Feel so fresh now. Lovely stuff. That, after Wednesday, was my weekend goal and I've done it Friday. I still needed a little help opening doors etc but I'm already feeling a little better.
Still, however, my main concern is the pesky swallow and cough reflex.
I just want answers.... They say "give it time" but does that mean wait in hospital until it comes back? If so.... How long would they leave it until they say "nah he's been here long enough we'll do more surgery or we'll do whatever..."
I just want to know with regards to how long I'll be here are we potentially looking at another week, new year or March time. I've already prepared for it to be new year in many ways. I mean, I can barely walk on the flat let alone around at home up stairs etc.... Mind you we have bannisters either side so should be fine!
Certainly been a roller coaster this December. Someone suggested I made a diary (I have a mini laptop here now) but I've kind of done that on ph
Will see if I can get some p8cs up soon too.
Otherwise my balance seems MARGINALLY better today perhaps. Walked to the shower and had a sit down shower.... f
k me do you take running hot water for granted! Feel so fresh now. Lovely stuff. That, after Wednesday, was my weekend goal and I've done it Friday. I still needed a little help opening doors etc but I'm already feeling a little better. Still, however, my main concern is the pesky swallow and cough reflex.
I just want answers.... They say "give it time" but does that mean wait in hospital until it comes back? If so.... How long would they leave it until they say "nah he's been here long enough we'll do more surgery or we'll do whatever..."
I just want to know with regards to how long I'll be here are we potentially looking at another week, new year or March time. I've already prepared for it to be new year in many ways. I mean, I can barely walk on the flat let alone around at home up stairs etc.... Mind you we have bannisters either side so should be fine!
Certainly been a roller coaster this December. Someone suggested I made a diary (I have a mini laptop here now) but I've kind of done that on ph
Will see if I can get some p8cs up soon too.
ali_kat said:
Ross, they say give it time because that's all they know - in time it will get better.
How long - how long is a piece of string? It is different for every person, Gary healed in 3 months - that could take me 4 months, or you 2 months. Until you've done it, they don't know IYSWIM?
Every day is a new day, one you may not have had. Count your blessings & see the differences. A few days ago you'd not have been able to win the World Gobbing Championship
You didn't think you could do it til you did! And that is hard work & proves that you're getting your swallow back - you need those muscles to get stuff up as well as down
I'm sorry that the Ward has been closed to Visitors, that seems a bit like shutting the stable door after the horse has bolted to me
I'd isolate him in one of the side rooms rather than isolate everyone! (less cleaning for a start ) But what do I know? :shrug:
I still won't be winning any gobbing competitions, I can't spit anything out my mouth. How long - how long is a piece of string? It is different for every person, Gary healed in 3 months - that could take me 4 months, or you 2 months. Until you've done it, they don't know IYSWIM?
Every day is a new day, one you may not have had. Count your blessings & see the differences. A few days ago you'd not have been able to win the World Gobbing Championship
You didn't think you could do it til you did! And that is hard work & proves that you're getting your swallow back - you need those muscles to get stuff up as well as down I'm sorry that the Ward has been closed to Visitors, that seems a bit like shutting the stable door after the horse has bolted to me
I'd isolate him in one of the side rooms rather than isolate everyone! (less cleaning for a start ) But what do I know? :shrug:It is worrying to think though, that if I wasn't allowed in here or whatever, I'd die within a few days, if that from dehydration....
Just had a funny turn. Went to walk to toilet with someone but went into like a spasm/convulsion.... Wasn't very nice! Probably just take it easy for the rest of the day. Trouble is if I had my own comfortable bed I reckon I'd sleep so much better!
IforB said:
Hi Ross, just stumbled across this thread and thought I'd chuck in my 10p about a mildly similar situation I had a few years ago.
I was 29, just about to get married when I noticed pain in my abdomen. Fortunately my FiL is a consultant and I mentioned it to him (as I've always been rubbish at going to the docs when I've felt a bit under the weather) and he had one poke of my stomach, got on the blower and I found myself in the CT scanner at his hospital the next morning, where an hour later they confirmed something I wasn't really expecting. I had both Hodgkin's and non-Hodgkin's lymphoma at the same time and they were both pretty far along. (It wasn't obviously exactly diagnosed that first day from just a scan!)
Anyhoo, after about a year of chemo, it was time for the last step on the treatment road, a stem cell transplant. I went into the isolation ward where I was to live for the next few weeks and all of a sudden, it all went a bit wrong and I went from being fine, to having a very high temperature and even fitting a bit. All of this before the treatment had even started. To cut a long story short, they threw the kitchen sink at me as they simply couldn't find the source of infection that was causing my temperature to go mental. Weeks of intravenous anti-virals, anti-fungals and anti-biotics followed until they decided it was in my spleen (all the necrotic tumour that had been killed off by chemo had caused an abscess inside it)
I was climbing the walls in frustration as I was stuck in a little room on my own and often unable to get any visitors, what made it even worse was that there wasn't even any internet access as the hospital had just opened and they still hadn't got it working yet...
After 5 weeks, they got the infection under control and it was time for my spleen to go bye-byes. They chopped it out and immediately I started to get back to full health. My spleen had been sodding up all of my blood counts, so I had a low Haemoglobin count as well as wonky white cells.
After a few weeks to recover from the surgery, it was time for round 2 in the isolation ward. Another 5 weeks stuck in the place followed, but at least this time it was moving towards a final close, even though the horribleness of the high dose chemo followed by the stem cell transplant had to be endured.
I got out eventually and that was wonderful. It was a horrific experience really, but these things do come to an end and life does move on.
I'm now 6 years down the line and whilst I still remember it, it's just a memory and I'm just thankful to still be here. We got married, I went back to work and now we have a wonderful, mischievous and very beautiful 16 month old rampaging around. The cancer was just something that happened and that's the way it'll be for you. It's crap at the time, but it does get better. Promise.
Your grumpiness and frustration at being stuck in, is in reality a really good thing. Simply put, if you can be in there and be pissed off, then you're actually doing well! When you lie there and couldn't give a monkey's then that's when it's concerning.
I send you all the best wishes I can and you'll be amazed how quickly it turns around once the infection gets a wallop.
That is one truly horrible but amazing story! Thanks for sharing with us! Truly remarkable! I just really wanted to get out in a few days, as initially expected, then it was like Hmmm let's hope for before Xmas but I'm beginning to doubt new year now. The feed thing truly pissed me off.... I was 29, just about to get married when I noticed pain in my abdomen. Fortunately my FiL is a consultant and I mentioned it to him (as I've always been rubbish at going to the docs when I've felt a bit under the weather) and he had one poke of my stomach, got on the blower and I found myself in the CT scanner at his hospital the next morning, where an hour later they confirmed something I wasn't really expecting. I had both Hodgkin's and non-Hodgkin's lymphoma at the same time and they were both pretty far along. (It wasn't obviously exactly diagnosed that first day from just a scan!)
Anyhoo, after about a year of chemo, it was time for the last step on the treatment road, a stem cell transplant. I went into the isolation ward where I was to live for the next few weeks and all of a sudden, it all went a bit wrong and I went from being fine, to having a very high temperature and even fitting a bit. All of this before the treatment had even started. To cut a long story short, they threw the kitchen sink at me as they simply couldn't find the source of infection that was causing my temperature to go mental. Weeks of intravenous anti-virals, anti-fungals and anti-biotics followed until they decided it was in my spleen (all the necrotic tumour that had been killed off by chemo had caused an abscess inside it)
I was climbing the walls in frustration as I was stuck in a little room on my own and often unable to get any visitors, what made it even worse was that there wasn't even any internet access as the hospital had just opened and they still hadn't got it working yet...
After 5 weeks, they got the infection under control and it was time for my spleen to go bye-byes. They chopped it out and immediately I started to get back to full health. My spleen had been sodding up all of my blood counts, so I had a low Haemoglobin count as well as wonky white cells.
After a few weeks to recover from the surgery, it was time for round 2 in the isolation ward. Another 5 weeks stuck in the place followed, but at least this time it was moving towards a final close, even though the horribleness of the high dose chemo followed by the stem cell transplant had to be endured.
I got out eventually and that was wonderful. It was a horrific experience really, but these things do come to an end and life does move on.
I'm now 6 years down the line and whilst I still remember it, it's just a memory and I'm just thankful to still be here. We got married, I went back to work and now we have a wonderful, mischievous and very beautiful 16 month old rampaging around. The cancer was just something that happened and that's the way it'll be for you. It's crap at the time, but it does get better. Promise.
Your grumpiness and frustration at being stuck in, is in reality a really good thing. Simply put, if you can be in there and be pissed off, then you're actually doing well! When you lie there and couldn't give a monkey's then that's when it's concerning.
I send you all the best wishes I can and you'll be amazed how quickly it turns around once the infection gets a wallop.
Losing 15% of my body weight is inexcusable, yes, you'll lose some but my consultant was disgusted with it. That's never going to help my recovery at all! My muscles have just totally wasted and gone to jelly.... They'll be built back again I know but it's all a delay.
Only thing I must remember to ask is why I'm STILL so tachycardic and hypertensive after the op. Otherwise km a healthy guy and my BP usually 110/70 or so, it's still at 150/100! My resting pulse is usually 50 but it's still almost 110! Almost 2 weeks after surgery.... Seriously!?
Some good, some not so good news, but mostly good.
The good started out as a fairly decent walk the toilet with basically no assistance at all. Bad was a walk out later I fell over.... Luckily no seeming damage anywhere. Next good stuff, they're happy with my blood tests and chest xray.
So.... Only thing stopping me going home is no feeding tube or something to suck moisture from my mouth.... I can just about manage without that I need a be but it's not dignified. I'm not sure whether they'll lend you these 2 items for a couple weeks to see if things settle at home? It'd save NHS bedspace and takes 2 equipment items which aren't needed everywhere and would be in use if I was there anyway...
The good started out as a fairly decent walk the toilet with basically no assistance at all. Bad was a walk out later I fell over.... Luckily no seeming damage anywhere. Next good stuff, they're happy with my blood tests and chest xray.
So.... Only thing stopping me going home is no feeding tube or something to suck moisture from my mouth.... I can just about manage without that I need a be but it's not dignified. I'm not sure whether they'll lend you these 2 items for a couple weeks to see if things settle at home? It'd save NHS bedspace and takes 2 equipment items which aren't needed everywhere and would be in use if I was there anyway...
Bit of an update after my parents took my phone away!.... It's been a long time here, I'm still at hospital. I needed another op on my throat (tracheostomy) because I couldn't swallow saliva was getting into my lungs and causing infection after infection). I'm awaiting one more operation to fit a stomach peg so until I can swallow again I'll b3 feeding myself through a tube into my stomach.
My eyes are still poor with diplopia, my tongue is moving MARGINALLY more (and I do mean marginally at best), I have developed an extremely weak swallow (it doesn't even take any saliva down, but I had nothing at all last week so that's progress), my balance is still iffy but markedly better and I can just about walk around myself but feel more confident with a zimmerframe. The numbness in my legs and, erm, private area is still similar, perhaps marginally better again. Drs seem to think most of my problems will settle (whether that'll be 100% or not, who knows) but this will likely be quite a few months rather than weeks.
My eyes are still poor with diplopia, my tongue is moving MARGINALLY more (and I do mean marginally at best), I have developed an extremely weak swallow (it doesn't even take any saliva down, but I had nothing at all last week so that's progress), my balance is still iffy but markedly better and I can just about walk around myself but feel more confident with a zimmerframe. The numbness in my legs and, erm, private area is still similar, perhaps marginally better again. Drs seem to think most of my problems will settle (whether that'll be 100% or not, who knows) but this will likely be quite a few months rather than weeks.
Stomach peg being fitted this afternoon so that'll get rid of this nasty nose tube. Walking yesterday really coming along well, I walked a couple of hundred metres in one stint, largely without crutches and at normal walking pace. Still a bit wobbly but the progress in the last 4 days with that has been amazing.
Swallow is not really any better, tongue is moving a touch more (it's very subtle and the only reason I noticed was I can now JUST about lift my tongue high enough for them to get the thermometer under it when they check my temperature. Legs still a bit numb though and not much better.
They seem confident to send me home for a good few hours Xmas day as I've already learned how to feed myself and almost learned what I need to to care for this trachy, all I need to learn now is how to take out and clean the inner tube/canula thing and replace that and change the dressing.
I'm getting mixed views.... Some nurse saying I could be out next week, another saying they usually let trachy patients out on Mondays but because of new year and District nurses being off it may be Monday 5th.... Who knows! How can you upload videos here? I've got a video of me walking. I'll see if I can upload a few pics too.
Swallow is not really any better, tongue is moving a touch more (it's very subtle and the only reason I noticed was I can now JUST about lift my tongue high enough for them to get the thermometer under it when they check my temperature. Legs still a bit numb though and not much better.
They seem confident to send me home for a good few hours Xmas day as I've already learned how to feed myself and almost learned what I need to to care for this trachy, all I need to learn now is how to take out and clean the inner tube/canula thing and replace that and change the dressing.
I'm getting mixed views.... Some nurse saying I could be out next week, another saying they usually let trachy patients out on Mondays but because of new year and District nurses being off it may be Monday 5th.... Who knows! How can you upload videos here? I've got a video of me walking. I'll see if I can upload a few pics too.
Try this
http://www.youtube.com/watch?v=mWHrEz4noC0&sns...
I've managed to put 2kgs back on which is good. I just want to go home and get some decent sleep!
http://www.youtube.com/watch?v=mWHrEz4noC0&sns...
I've managed to put 2kgs back on which is good. I just want to go home and get some decent sleep!
OpulentBob said:
Can I ask what may be a dumb question? Why is one eye of your specs blanked out?
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