What's wrong with me?!
Discussion
I've only spent one night of my adult life in hospital. I can't imagine what it would be like knowing I'd be in for a few weeks, but I've been ill or injured seriously a few times in my life and have learn't it's baby steps, and two steps forwards and one step back for a good while.
Ross, you will get better, you won't be a bit better day by day, but week by week it will come, slowly but not necessarily steadily. All the best, keep your chin up and let us know when you need a whip round for coke and hookers and we'll see what we can supply.
Ross, you will get better, you won't be a bit better day by day, but week by week it will come, slowly but not necessarily steadily. All the best, keep your chin up and let us know when you need a whip round for coke and hookers and we'll see what we can supply.
Ross, my fiancee gave birth to our daughter Eris is traumatic circumstances on August 1st. She had an emergency c-section. This is something that is classed as routine now and it took her nearly a week to be moved off the labour unit to the less critical maternity ward.
When she tried to get out of the bed after a day or two, she nearly collapsed. She couldn't sit in the chair for more than 10 minutes or so before she went really pale and had to be moved back into bed. It took her days to get well enough to have a shower. This was from having an operation that many, many women have every day, let alone brain surgery.
I was in hospital for three days in 2008 with a lung lining infection (pleurisy). My friend took me home on the third day and it was terrible. I couldn't walk more than 10 metres without being out of breath and struggling. I was in a lot of pain and it really knocked me for weeks. Again, this is nothing on a par with having something sliced off my brain.
What I'm trying to say is that you have had major surgery and it will take time to recover. Stress will not help in any way at all. You need to try and relax and give your body chance to get back to full strength.
Ironically, I'm pretty sure that my fiancee and baby would be dead now if it wasn't for modern medicine. So, like you, I'm thankful that the trauma they were put through ultimately helped them stay alive.
Chin up chap and just keep up the fight. You have done so well so far.
When she tried to get out of the bed after a day or two, she nearly collapsed. She couldn't sit in the chair for more than 10 minutes or so before she went really pale and had to be moved back into bed. It took her days to get well enough to have a shower. This was from having an operation that many, many women have every day, let alone brain surgery.
I was in hospital for three days in 2008 with a lung lining infection (pleurisy). My friend took me home on the third day and it was terrible. I couldn't walk more than 10 metres without being out of breath and struggling. I was in a lot of pain and it really knocked me for weeks. Again, this is nothing on a par with having something sliced off my brain.
What I'm trying to say is that you have had major surgery and it will take time to recover. Stress will not help in any way at all. You need to try and relax and give your body chance to get back to full strength.
Ironically, I'm pretty sure that my fiancee and baby would be dead now if it wasn't for modern medicine. So, like you, I'm thankful that the trauma they were put through ultimately helped them stay alive.
Chin up chap and just keep up the fight. You have done so well so far.
E65Ross said:
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!
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.
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!?
E65Ross said:
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!?
A fairly normal side effect of the surgery Ross. It can go on for quite some time apparently.E65Ross said:
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.... 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.
When everything else is sorted but the swallow needs more time to settle and you can manage your NG yourself you would potentially be allowed home. You can shove Christmas dinner in a blender (gravy to make it wet enough 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.
) and down the tube with a syringe if needs be. District nurses to give you a hand replacing tube or whatever if necessary. But it sounds like you're doing great, I kinda suspect they wouldn't want to treat it as anything long-term really, from intensive care to where you are now in a few days is fab, on that trajectory I reckon you have cause to be reasonably optimistic.All the best.
BVD (got long-term slightly b
ksed up swallow myself and get some hydration via PEG tube)E65Ross said:
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....
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!?
Losing weight is a pain, but you'll get it back. It will just take a bit of time. It took me around a year to get back to "normal" weight and fitness. As I had lost my medical (I fly aeroplanes for a living and I lost my class 1 medical for 3 and a half years) I wasn't working after the treatment and lived near a couple of motocross tracks, so I bought an mx bike and decided to get back to fitness that way. To start with I could hardly pull the thing off the trailer on my own, let alone ride quickly. Half a lap at a snail's pace and I was nearly having a heart attack! It got better though and eventually I could ride as long as I wanted. I never got any faster, but that's down to a lack of talent and being a scared 30+ yr old and not a teenager anymore!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!?
The only advice I can really give, is to not get too bogged down in the detail and since you're only a couple of weeks into your recovery, then seriously, don't sweat it! You have to give yourself time to heal. 2 weeks is just enough time for the most superficial of cuts to heal, let alone what happens during major surgery.
You will get better, it will just take you longer than you want. I know the frustration, but the best thing you can do to speed up your recovery is to relax and let it run it's course as best you can. My resting heart rate took months to get back to anything like normal. It's just how it is.
Keep up the pressure on the hospital, as you do need to drive your own treatment at times, don't be unreasonable and always keep your cool as best you can, but don't take no for an answer if you think something is wrong.
Keep it up and I look forward to hearing that you've gotten out!
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...
Genuinely wish you all the best and also wish you bucket loads of patience in the coming weeks. It's not all going to be a smooth upward curve - there will be bumps in the road (under investment in the infrastructure, I hear ) - and you can't rush things. Recovery will go at the pace it wants to go - if you try to rush things you can sometimes end up causing setbacks. While it feels like you want to be climbing the walls, sometimes the hardest part is forcing yourself to sit back and accept that you have to go with the flow.
) - and you can't rush things. Recovery will go at the pace it wants to go - if you try to rush things you can sometimes end up causing setbacks. While it feels like you want to be climbing the walls, sometimes the hardest part is forcing yourself to sit back and accept that you have to go with the flow.E65Ross said:
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...
Yup, you can be discharged with NG tube and with a portable suction machine (eg http://www.vbm-medical.de/cms/114-1-manual-suction... for smallest and lightest I know of), with district nurses helping out with equipment and stuff as needed... BUT if you're reasonably close to not needing one or t'other (or better, both) then they might want to hang onto you until then. You really are doing VERY well, I know it feels slow but it's bloody brilliant - you've gone from ICU etc to seriously talking about independent self-care in what, a fortnight?! 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...
PS you can put anything that'll fit down that NG tube. Just saying.
Unfortunately the consultant has asked Ross to keep off his phone for now as he needs to rest. He's very fatigued.
Ross will need a Tracheostomy tomorrow as he is having issues with breathing and chest infections. There have however been some improvemens today
I'll update this space when I have more news.
Best regards,
Matt
Ross will need a Tracheostomy tomorrow as he is having issues with breathing and chest infections. There have however been some improvemens today
I'll update this space when I have more news.
Best regards,
Matt
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