Well yesterday was a horrible day, woke up a 1am with my legs in agony, took some painkillers and walked around for a bit and it subsided so I went back to bed. Then I woke up again at about 4am and with exactly the same thing, this time unable to take any painkillers because I'd already taken codeine and paracetamol. I was feeling angry, pissed off and just gutted that yet again I didn't get any sleep. All day I just felt low, tired and anxious, everything I tried to do just screwed up and I got upset. For instance, tried to make myself breakfast, dropped an egg on the floor and pretty much broke down and started crying... just felt like I couldn't even look after myself, I know its all the steroids, mood swings plus the lack of sleep but it just makes you feel pathetic. Still I haven't been taking any of the diazapam or sleeping pills, I've just been talking it through with people and calming myself down, which has got to be a good thing.
Anyway, it was a bad day, I managed too get a bit more sleep later on in the day and felt a lot better. Plus we've figured out that the pain in my legs is due to poor circulation, so last night when I went to bed I made sure my legs were raised with pillows and I slept straight for a good 5-6 hours so I feel better this morning, probably try and get a couple more hours again later on.
With my neutrophyll levels really low at the moment not being allowed to go out to crowded places anyway is really starting to get to me, finding things to do around the house is getting tough, god knows why I've got tons of games and I'm never alone so theres always somebody to do stuff with, plus I want to start working on my Uni work but when I try and do it with not much sleep, blurry vision and a bit of a fuzzy brain it feels like I'm screwing it up and I get all anxious and upset about it. Again I know its the steroids and the radiotherapy and it WILL fade. but right now I just feel useless and I just can't seem to hold on to that positivity I had.
Having said all that, there have been moments in the last week where I've felt brilliant, my friends came to see my the other day and that was brilliant, I felt proper anxious about it beforehand just because I thought I'd be a mess but it was great. Plus sometimes after I've slept well my mind feels so clear and everything just comes together, so I KNOW this is going to get better.
Wednesday, 29 July 2009
Friday, 24 July 2009
Day +77: What a week!
Tough to know where to start, it's been a hell of a week.
It's been a week of sleep deprivation, tears, anxiety and mood swings but the steroids are coming down and down now, I'm getting close to being off them though but they do build up in your system so it'l take a while for them to flush out even when I'm off them entirely.
Physically everythings going really well, I'm eating well, exercising (a little too much yesterday, my legs ached like a bitch last night!). I haven't needed any top ups on blood or potassium or anything at the hospital so my body seems to be taking care of itself by the looks of things and the Docs are all happy.
My medications come down quite a lot, I'm not on the Ganciclivir right now so I dont have to hook myself up to that machine at 8am and 8pm everyday, thats been brilliant, all I gotta do is take pills three times and day, not even a massive amount.
I've kicked those crappy sleeping pills now and I'm getting decent amounts of sleep on my own, still not quite enough maybe, but that'l come in time.
As for my head, I'm still finding it quite difficult to concentrate but it's getting better with more sleep. I'm still getting very anxious and worried over next to nothing, I really just need to relax. Literally anything starts to make me get a bit anxious, what to have for breakfast, what to put on tv, what video game to play, when to go home and visit my family, whether I'm annoying my girlfriend or being an idiot to her. The Doctor did give me some diazapam to take the edge off it when it was really bad a few days ago but I haven't been taking it the last few days, just deep breathing and talking to people instead. There's a lot of hours in the day and it can make you feel a bit down when you're not really allowed out of the house. I don't know if I'm 'depressed', I imagine its all just the steroids on-top of everything I've been through so far, they mentioned putting me on antidepressants when things were real bad a few days again but I don't know... I might feel a lot different once the steroids are all gone, but if they help and their safe, we'll see.
I'm off in to hospital today for a while, I'm not taking this one pill any more which means that I have to go in once every three weeks to inhale this gas. I've had it once before, it's pretty horrible but it doesn't last too long. My girlfriends taking me in so if I start getting anxious she'll be there to help me calm down, not that there's anything to worry about!
Ahhhhh it felt good to get all that out!
It's been a week of sleep deprivation, tears, anxiety and mood swings but the steroids are coming down and down now, I'm getting close to being off them though but they do build up in your system so it'l take a while for them to flush out even when I'm off them entirely.
Physically everythings going really well, I'm eating well, exercising (a little too much yesterday, my legs ached like a bitch last night!). I haven't needed any top ups on blood or potassium or anything at the hospital so my body seems to be taking care of itself by the looks of things and the Docs are all happy.
My medications come down quite a lot, I'm not on the Ganciclivir right now so I dont have to hook myself up to that machine at 8am and 8pm everyday, thats been brilliant, all I gotta do is take pills three times and day, not even a massive amount.
I've kicked those crappy sleeping pills now and I'm getting decent amounts of sleep on my own, still not quite enough maybe, but that'l come in time.
As for my head, I'm still finding it quite difficult to concentrate but it's getting better with more sleep. I'm still getting very anxious and worried over next to nothing, I really just need to relax. Literally anything starts to make me get a bit anxious, what to have for breakfast, what to put on tv, what video game to play, when to go home and visit my family, whether I'm annoying my girlfriend or being an idiot to her. The Doctor did give me some diazapam to take the edge off it when it was really bad a few days ago but I haven't been taking it the last few days, just deep breathing and talking to people instead. There's a lot of hours in the day and it can make you feel a bit down when you're not really allowed out of the house. I don't know if I'm 'depressed', I imagine its all just the steroids on-top of everything I've been through so far, they mentioned putting me on antidepressants when things were real bad a few days again but I don't know... I might feel a lot different once the steroids are all gone, but if they help and their safe, we'll see.
I'm off in to hospital today for a while, I'm not taking this one pill any more which means that I have to go in once every three weeks to inhale this gas. I've had it once before, it's pretty horrible but it doesn't last too long. My girlfriends taking me in so if I start getting anxious she'll be there to help me calm down, not that there's anything to worry about!
Ahhhhh it felt good to get all that out!
Thursday, 16 July 2009
Day +69: Toughest times I've had, and they're not over yet
The last few days the steroids have just been wrecking me, I've been trying to survive off a couple of hours sleep a night and it's just been turning my brain to jelly, which has been making me worry about absolutely everything. Eventually today it came to a head, I just started screaming and shouting, I couldn't calm myself down so we went straight to hospital and the Doctor's put me on some dopamine to keep things in perspective and keep me calm.
It was meant to help me sleep tonight and I've had a few hours but it's 3am now so I think they're going to have to up the dose tomorrow. It's hard to say what I'm worried about, pretty much everything, but if they keep the edge off with this valium, or dopamine or whatever they decide to give me I'm hoping it'l keep me going until the steroids come down and I can start sleeping properly again.
A big source of stress is the routine I have to keep every day:
7am to 8:30am - Hook myself up to a machine at home, using hyperdermic needles, saline solutions and have this anti-virus drug. It's called Ganciclovir and it's a twice a day thing so, 7am and 7pm.
8am - Have all my morning pills: intraconazole, steroids, cyclosporin, MMF, potassium, magnesium, penicilin v, septrin.
2pm - Afternoon pills: potassium, magnesium, omeperzole.
7pm to 8:30pm - Again hook myself up to the machine again.
It can only get better from here right :)
My family have been great, they're here 24/7, I just cant cook, or clean, or look after myself, everything I do is a massive amount of effort, just replying to text messages from friends or on facebook really taxes my brain after everything.
It was meant to help me sleep tonight and I've had a few hours but it's 3am now so I think they're going to have to up the dose tomorrow. It's hard to say what I'm worried about, pretty much everything, but if they keep the edge off with this valium, or dopamine or whatever they decide to give me I'm hoping it'l keep me going until the steroids come down and I can start sleeping properly again.
A big source of stress is the routine I have to keep every day:
7am to 8:30am - Hook myself up to a machine at home, using hyperdermic needles, saline solutions and have this anti-virus drug. It's called Ganciclovir and it's a twice a day thing so, 7am and 7pm.
8am - Have all my morning pills: intraconazole, steroids, cyclosporin, MMF, potassium, magnesium, penicilin v, septrin.
2pm - Afternoon pills: potassium, magnesium, omeperzole.
7pm to 8:30pm - Again hook myself up to the machine again.
It can only get better from here right :)
My family have been great, they're here 24/7, I just cant cook, or clean, or look after myself, everything I do is a massive amount of effort, just replying to text messages from friends or on facebook really taxes my brain after everything.
Saturday, 11 July 2009
Day +64: The Road to Recovery
Well I've moved in with my girlfriend in a nice house pretty near my old one, all my stuffs settled in, my rooms set up all nice and cosy, think I've managed to lose a few things (this is what happens when your too weak and messed to move anything yourself) but I'm really grateful to everyone who helped me move, my family, my girlfriend and my Dad's mates were stars.
So I'm back on the routine going to Hospital twice a week, doing all my pills at home and my Ganciclovir and its been pretty rough transition to say the least but it's day +64 and day +100 is creeping... ever... so... slowly... closer.... and I'm finally out of the Bone Marrow Transplant ward's clutches and I head back to the AHU. I don't have anything against the BMT Ward, they're been brilliant, the do a fantastic job and they're all fantastic and the consultants are great. The problem comes with the Day Area ward the floor below, to squeeze what you need out of them can be nightmare, it's a wonder a lot patients do it. I'm not gonna bitch about it, it's a tough job and I know they do their best but between pharmacy mistakes and scatty registrars you really realise, you are in-charge of yourself now and you ain't getting a lot guidance.
Still consultants are great, Matt especially is quite happy to ask my questions and is very clear so I stick with his word as gospel.
In myself I've been keeping my spirits up with retail therapy buying games and planning on my buying computers in the future, buying Wii and 360 games to. It's not easy. I suppose I can blame the steroids to a certain to a degree, being moody and that but it can be so difficult to keep your mind focused just writing this blog is really testing my concentration I've written a long entry like this for a while it's really taxing my brain to keep the sentences go coherent (I apologise if they are far from it).
It's difficult to really explain how I feel at the moment, I've been upset a lot really over nothing in particular. I suppose I think back to the weeks of chemo free time I spent just prior to my transplant I think how good I was feeling and it feels like getting back to that stage is going take a long time... I'm really learning meaning of the phrase 'taking it one day at time' which I always thought was going to be one of those cancer cliches (like 'stay positive') but I'm learning the meaning off both in a big way at the moment.
It comes down to this today:
I miss my friends, my indepdendence, my health.
So I'm back on the routine going to Hospital twice a week, doing all my pills at home and my Ganciclovir and its been pretty rough transition to say the least but it's day +64 and day +100 is creeping... ever... so... slowly... closer.... and I'm finally out of the Bone Marrow Transplant ward's clutches and I head back to the AHU. I don't have anything against the BMT Ward, they're been brilliant, the do a fantastic job and they're all fantastic and the consultants are great. The problem comes with the Day Area ward the floor below, to squeeze what you need out of them can be nightmare, it's a wonder a lot patients do it. I'm not gonna bitch about it, it's a tough job and I know they do their best but between pharmacy mistakes and scatty registrars you really realise, you are in-charge of yourself now and you ain't getting a lot guidance.
Still consultants are great, Matt especially is quite happy to ask my questions and is very clear so I stick with his word as gospel.
In myself I've been keeping my spirits up with retail therapy buying games and planning on my buying computers in the future, buying Wii and 360 games to. It's not easy. I suppose I can blame the steroids to a certain to a degree, being moody and that but it can be so difficult to keep your mind focused just writing this blog is really testing my concentration I've written a long entry like this for a while it's really taxing my brain to keep the sentences go coherent (I apologise if they are far from it).
It's difficult to really explain how I feel at the moment, I've been upset a lot really over nothing in particular. I suppose I think back to the weeks of chemo free time I spent just prior to my transplant I think how good I was feeling and it feels like getting back to that stage is going take a long time... I'm really learning meaning of the phrase 'taking it one day at time' which I always thought was going to be one of those cancer cliches (like 'stay positive') but I'm learning the meaning off both in a big way at the moment.
It comes down to this today:
I miss my friends, my indepdendence, my health.
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