Tuesday, 29 April 2014
An Extra Holiday.
The next week continued as the previous time I got out of hospital, a lot of running to the loo, a lot of not feeling great and a lot of sitting around. My liver and kidneys seemed to be having a rough time trying to get out all the rubbish that's inside me and they were making me feel rough too, increased my fluid intake to try and help, with little success and was starting to think I might have to phone the hospital up if it doesn't improve. Eventually they did though by about Thursday. Bit of a relief. The tinnitus has continued but not as bad as the weekend.
As before as after Wednesday things began to improved e and I started feeling a little better and my taste was starting to return too. Thursday I got out for a bit of a walk, not much just down to the postbox and tesco to get something for lunch and back home and sat in the garden read for a while, all covered up of course with no direct sunlight on me.
Friday I went for a bit of a longer walk with was nice until I started walking back down my street at the end and my legs had nearly completely given up on me, the avascular necrosis and osteoporosis seems to be getting generally worse, a mixture of sitting and lying around so much and with the stronger drugs I'm getting too.
Saturday I had a nice quiet day, watching Stargate and ... and that's it really, I'm sure there were a few games thrown in the too at one point or another, also I started eating my easter eggs now I have my taste and appetite back. Only bad thing about having the appetite back is the amount of junk I'm eating and crisps make me pimply and got some dry skin too so still continuing with the lots of fluids.
Sunday started something like Saturday sitting watching some TV with lewis and Caitlin, tried teaching them a bit of piano, which I was also "teaching" myself at the same time, k got a bit of twinkle twinkle learnt, they couldn't care they just wanted to make a racket. Later on in the evening my neck and head got a little sore and took some paracetamol which eased it and watched some more Stargate and motd2, poor Liverpool, getting beat by a better team.
When I was getting to bed my head was starting to hurt a bit again, one of the reasons I was going to bed, but my mum had went to bed at about 9 so I'm guessing she's not well, which is great cause I was sitting with her for a few hours earlier and no mention of it, even though I've spent the last 2 months avoiding people so I would not even have the slight chance of bumping onto anyone with even the sniffles. During the night I had a very broken sleep, up every hour or so and felt a temperature coming on and come the morning when I did get up I took my temp and it was 38.09°. The district nurse comes on a Monday so I waited for her to clean my PICC line, they normally come at 10 but as I need them to come early this time they don't. I phoned the hospital at 11, who phoned back and asked what was wrong, who then phoned back again saying to come up to get my bloods done between 1 and 2. Gave it a few mins and at 12 rang the district nurse... HQ? To tell the nurse that I will probably not be there by the time she gets here and to just leave it. Went and got sorted to leave and got things sorted for a stay, just incase. Then ding dong, was the district nurse, who then rang the hospital to find out if it was fine to change the PICC so another wait for that, turned out it was and got it done. She got the call not to not to call out while I was sitting there and another one after about PPI.
Finally got to hospital and they took bloods, I read and waited, by this stage I has taken some paracetamol as I couldn't be bothered with the sore head and temp anymore, so I was back to feeling normal again. They dome a few tests to check for meningitis etc because of the sore head and took some medical background and all that caper then went to check the counts, turned out the neutraphils were zero and so with that they want to keep me in. At this point all communication was lost and things just... happened/didn't happen. I was brought to a ward. Porter just turned up and took me, then when I got to the ward to the entry test for the hospital another porter turned up to take me for an xray, were there was no form for them to know what to xray and I didn't even know I had to got for one so no point asking me. After an hour they finally got it all sorted and I got back to my entry test. Started on an antibiotic and that was all that happened, then one of the nurses said my magnesium is low. Few blood pressures taken, asked the nurse exactly what's going on. So basically I have nothing to fight infection because I might have had an infection, but they don't like releasing people when their neuts are less than 1 and they are going to give me the antibiotic and see if they can do anything for the neuts and some magnesium supplements too. Was what I had thought the reason was, no point sending me home with some tablets then back a couple days later after catching a bug.
Next day after a lot of sitting around reading, I'm focusing on reading this visit, or at least trying to, the doc came round and said the meets where up to about 5 which is considerably better but the magnesium is still only 3.1 which is still very bad. I thought the way he was speaking after talking about WBCs that he was going to let me go home, which I didn't really want with my mum being sick. As long as I can still get the chemo next Monday I don't really care what else. But they said that might shorten the stay by a day or two and they're changing one of my tablets to another as it can cause a fall in magnesium but it also reduces the effect of a long term antibiotic I'm on so... its never simple.
Dad came up at lunch and said about my mum feel awful the other day whenever she got up which sort of peeved me off that she new fine well that she was sick and never said anything apart from a rash she got from some cream. Later he went on to say it was just stress... and my mum did too when she phoned later. But at least I get the evenings free from visitors to do what I want, as "nice" as visitors are, I much prefer it this way.
Anyway today has been pretty nice sitting reading and had a bit of a doze when the sun was shining in and the writing this, supper will be round soon so bossy nurse will close the windows,blinds turn on the side lamp and basically tell me to go to sleep and give her no work to do. She's not that bad really....
Sunday, 20 April 2014
and home.
So the rest of the time spent in hospital is a bit of a blur all into one, nothing much differentiating one day to the next, thinking of a few things that happened, all that did happen. I got my ears tested to see what they were like with the tinnitus and even with the tinnitus they said that my hearing was well above average and that it may be the slight change that I have noticed that is making all the difference and why it seems to be so bad, he did say that towards the higher end that there was a dip but even with that it was still very good. During the hearing test though as I was hooked up to the three drips I kept hearing the clicks of the machine and initially I thought that it was part of the hearing test till it twigged on me that it was the machines and a few minutes into the test with having to wait out in the waiting room the battery started to go and so started to beep itself. Because of this they had to open the door and plug it in which I'm sure didn't help with the results either and probably brought them down a bit too.
There were four people in the ward one, all of us on the same chemo (at the time) just different doses me and another guy were on the exact same thing the other two were on a slightly less dose one over three days the other over five, the one that was on the three day course seemed to start suffering really badly on the Tuesday, didn't seem to be any reason for it and everyone else was still all in good spirits, this continued into the next day as well for him and he did get out ok but it turned out that he was on the booze at the weekend and that's what had triggered it to be so bad, his kidneys probably just couldn't cope with it all, bit of a lesson for him and a warning to me to make sure I avoid any. Although not that I would feel up for anything like that with the way I was the last time. I got a the portable TV sent out on Wednesday so had a bit of a play with that on Wednesday evening but nothing too much as my mum was over but the next day had a better bash at it and works perfectly when the antenna is out the window, picks up everything perfectly, so I'll get to watch the IPL which I done on Thursday and Friday too.
Come Thursday I was still feeling pretty good and there was a new patient came in, he has been going through the chemo for a bit less time than me but has had a lot more done with surgery and he went through it sixteen years ago to, he was quite fun to be around and certainly lifted the room, which was already in pretty good form all things considering. I had bloated up so much with all the fluids that I was getting and started on diuretics on the Wednesday to get rid of that, Feels pretty rotten when you're all bloated up, uncomfortable, hard to breathe and move, not nice in the slightest. First one was given to me in the afternoon which was fine I was peeing all day and then died down at night, the next day though I was given one in the afternoon and then the evening, the evening one didn't seem to kick in until around midnight so I was basically running to the loo all night because of that and I had the rattliest trolley to carry the pumps around with, felt like an earthquake going along during the night. But the others seemed to understand and weren't that bothered by it.
Friday I was getting more wrecked directly from the chemo, more drained tired and uneasy, the potassium levels had dropped too but they were happy enough to just give me a drip and that evening they let me go home. Got finished for about 7.30 and home for 8, was nice to get home but everything is so much noisier and just hurts my ears. Quiet night not doing much and then off to bed and running to the loo again over and over, getting rid of the excess fluid still. Saturday was a fairly relaxed day a lot of sitting around on the computer and watching Stargate Atlantis, was fine in the morning but as the day went on I'm just getting more and more rough, I thought I would have a crash today and be whipped out but I'm not as bad as I was expecting to be. That night I was just too tired to be on the computer and flung myself into bed and that was me till morning, apart from the running to the toilet all the time.
Sunday was a fair bit worse than the previous days, but comparing it to last time it's not too bad. I keep on eating to try and tasting things, but the taste never comes so I keep on eating and then over eating, I'm going to have to sort that out because it has put my stomach into knots and isn't helping with the nausea which I think I can flush out with just drinking plenty of water, I just need to make sure I can put the water into me with the food I'm eating. The bouts of tiredness haven't been great either, you could be sitting there full of energy one minute then a few seconds later your eyes are closed and you've missed a few minutes of the program you were watching and building up the energy to do anything is bad, even when you know that the outcome will be you in bed resting, the thought tires you out.
This evening my hearing was going as well and people's voices were going right through me it was as if they were just shouting right into my ears, incredibly annoying, I've also been really tired and could probably just pop off to sleep, but I thought I would do this and then maybe stick on a film or something, not that important, didn't eat too much dinner as I was still stuffed from my lunch earlier and haven't ate much chocolate at all, a cream egg, my stomach just isn't making any acid so things just seem to sit in there for a while longer than normal which isn't helping with things either. I'm just gonna sip on water and hope it passes soon enough and a bit quicker than the previous time too. I also get this weird feeling in my face too, as if there pressure at different points, like if I was wearing glasses and stuff like that and my jaw being pushed to the side, it's unusual but will pass. I also have now a real tingliness, not the numbness I get on my hands and feet that I have, which is a bit nice when you wiggle your toes, it's a bit tickly, but a painful pin prick tingliness whenever I touch my arms chest and shoulders, don't think it's anything serious, doubt it is.
But generally feeling much better than the previous time and the stay in hospital was quite enjoyable, if that's the correct term to use. Not even gonna bother reading over this and just go for a nap cause I'm now done out.
Tuesday, 15 April 2014
I'm in hospital!
So the week since my last post everything has continued to improve slightly each day, although I did tweak my back after writing the last blog which gave me a spasm in my back which is still playing up (but not as bad as it was) at times. Another problem I have is that my knees and hips have been sore too which I would have put down to the sitting around so much but my shoulders are sore at times too and when I move them a specific way, feels like everything just needs a good crack. This has made me think it is more the osteoporosis as much as the sitting around.
I'm trying to remember what I got up to during the week but I can't remember too much, but I didn't get out much, but more than last week, I went to the chemist on Monday to order tablets, Tuesday and Wednesday I just stayed in, Thursday I took a walk down to Connswater which was much easier this time than what it was last week and on Friday I had hospital and went down into work after as it was one of the managers was leaving to go on maternity leave till January so I popped in with some sweets for the party and to sign a card for her. I didn't want to linger around too much and take any chances with infections etc but at least I got to speak with a couple of the staff which is always nice and made me miss the place again for a while. I had also taken a picture of the sick line I last got from the gp to show them in work as I wasn't feeling capable last week of being able to take it in to them but we noticed that it was dated from January rather than March so that is one thing I'll have to do, but will have to get someone to pick it up for me as I'll be in hospital when it's ready.
I have also had a notion of getting a portable TV for when I'm in hospital for the IPL(cricket) and the world cup, so I went to napkin and bout one with a powered antennae, but when I got it home the sound doesn't work so had to go back and they're sending me out one from their offices, I would have just asked for my money back but I was very impressed with it (apart from the sound obviously). I even gave the manufacturers technical support a call to see if they had a solution, it seemed like a fairly small company and they had never heard of the problem, so either it was the one that doesn't work or no one has bought one in NI. I think it might be to do with what ever way the signal is broadcast here that the machine may not be able to decode the sound signal, which would suck. I'll find out tomorrow. But would be great to link it up to the projector on sunny days in the garden into a white sheet in the evenings for the footy.
I felt great on Friday, completely back to normal and maybe even a bit better, but I think this was steroid induced and that I might crash the next day, which is what did happen was pretty wrecked and had a bit of what seemed like a hangover from it, but it wore off pretty quick. I did shave my head earlier in the week and just in tome as my hair has stared to come out and I don't much want to clean up the mess like I had to last time. I have basically gave up on 24 after season 2 may go back to it but back onto Stargate and this time Atlantis which is much more my thing but not quite like SG-1 more military orientated even though its a science expedition. I've also been playing lots of World of Warcraft and caught up nearly completely with my character Insy.
Now for the more serious stuff, dun dun dun!! For hospital I guessed that I would be getting 6 cycles of the new chemo (R-ESHAP) as they had never said anything about it as they didn't know themselves. But if it continued that way I would have been getting out of hospital on the 11th July the day after got out from my very first chemo last year. But they informed me of the "long term" plan which was that I will be getting 3 cycles of ESHAP then a ct scan to make sure its all working as it should and if it is they are going to take stem cells doing a high dose chemo to destroy my whole immune system(which I don't have much of in the first place) then reintroduce the stem cells to grow back an immune system. First thing that came to mind was that this will possibly get rid of the ITP(my blood disorder) if the chemo hasn't already done that which I'll mention at the end. I haven't asked too much about the high dose chemo yet as there's still a while to go and we don't know if I'll be getting it or not so no point thinking about that yet.
Came into hospital on Monday and everything got started earlier than the last time at about 12 and the peritin made me dosie and tired for the rest of the day as always so slept for the next few hours. All of Monday went grand didn't drink much which kept the fluids balanced but the tinnitus still playing up a bit. Didn't get to sleep until about 3 just with sleeping all day. But I didn't mind got stuck into spy hunter on the vitta that I was stuck on a mission for and done it first time. Been reading mostly and watched jackasses Bad Grampa part of it with my mum which was a bit awkward at times but still think she enjoyed it.
Today getting washed as I only trimmed my beard and head there was some sheddage so I've asked my dad to bring up my clean shaver which barely gets used just get rid of it, make things easier. Also feel a little more bloated today, not much but feel a bit of pressure on my fave and head nothing bad or to worry about though. The tinnitus seems to have got a little bit worse today too although all seems to be going really well ins and outs are as they should and all the counts are grand too.
This day last year I was up at hospital and was the day that we thought that the rhombiplostim (or however its spelt) was starting to work its magic with the counts starting to be normal again, but I did have my "infection" by this stage I think it was about 2-3 weeks before that I started coughing. Can't believe its been a year now that this has been going on for and considering what's been happening I'm as happy as I've ever been and more relaxed too. Its great!! Roll on summer beers garden and the world cup!!
FYI I've done this on my phone and the first time I had done loads and left the app and it whipped it all so had to start from scratch. Really annoying when you're pushed for time!!
Sunday, 6 April 2014
Cycle 1 or 10
So I haven't updated the blog in a while, for a few different reasons, the first week I was just a bit done out and not well the 2nd I was in hospital and this week cause well I've been recovering from hospital, really took a lot out of me.
The first week nothing too much happened, I found out that I now have DLBCL (Diffuse Large B-Cell Lymphoma) a transformed aggressive one, apparently, to be honest I don't think it's that aggressive and is more just a resilient wee bugger to get rid of than they initially thought with plans A and B, and that I will be going in to hospital every 3-4 weeks to receive treatment (R-ESHAP) which is basically a couple of drips constantly from Monday to Friday 24 hours a day. I have been given a PICC line to make things a lot "easier" as it will be going right into a main vein in my body rather than into a smaller one in my arm. The PICC line was a bit uncomfortable to start off with as you could feel it poke into things in my chest and my armpit and even caused a bit of pain at times, I need to get that cleaned each week to prevent infections and making sure it's not blocked. Not allowed to get it wet so I have these bag type things to use in the shower and when I'm getting washed and as I showered each day rather than washing in the sink it has been a bit of a hassle getting a routine that stops it from getting too bad.
The week in hospital went quite well, from Monday to Friday as was planned, no real side effects was sleeping well and everyone in the ward kept themselves to themselves which was great as I just got to do what I wanted to do (watching films and reading, had the Vitta with me but never played it). One thing that did occur was with the amount of fluids I was receiving running to the toilet ever hour and having to measure input and output to make sure it was balanced. A couple of times I was told not to drink as much because my input was nearly 5l in total higher than my output, which caused problems itself with face, ankles, arms and belly swelling and even causing a few breathing problems. But this gradually started to decrease towards the end of the time there, which caused another problem which was with going to the toilet so much I was flushing out needed products and my potassium levels dropped so they kept me in for another couple of days to build that up with an added potassium fluid for another 30 odd hours, but I did get a night of not being hooked up to drips which was surprisingly freeing. Friday night I got moved to another ward as the one I was in was only open Monday to Friday, It was a nightmare, constant beeps because a guy kept pulling his line and blocking it, another guy who was a snorer and just generally noisy and another one who talked, thankfully the talker wasn't too bad and the noisy guy pestered him a lot and made it possible for me to just lie and ignore everyone else.
By Saturday I was starting to feel very rough with the last chemo kicking in that I got on Friday evening, nausea and mostly just feeling like crap, it's hard to explain but think of your worst ever hangover and think of how it would feel after about 3 days, that's probably as close as I can explain it although it's not really like that at all. Most of the week I had been tired, but I did constantly have family up, which was nice, but I spend more time with them when I'm in hospital than I do when I'm in the house with them. It's not really my thing, I like my own company too much. The thought is nice though. More or less all Saturday was spent sleeping and similar with Sunday too and by this stage I had started to develop tinnitus in my ears (caused by the chemo I got on the Friday) It wakes peoples voices go right through me or are just inaudible, a couple people I just can't make out. I don't even bother asking what they said most of the time now as well I dont really care if the weather's supposed to be nice tomorrow, I've got a couple pretty nice coats that would keep me dry if I was to go out anyway.
Sunday I got out and was very weak with sitting around for a whole week and not getting any exercise, the chemo has a big part to play in that as well as it has just drained me completely and staying awake longer than an hour or concentrating on anything for much time is impossible, even worse than what I am normally. It was nice to get home though and have a bit of freedom to do what I want to do and when, which is basically the exact same as what I was doing in hospital but with less interruptions. Taste has also basically gone but think it's more down to the mouthwash I am on to prevent infection than the chemo just yet, but I get cravings for tastes and the one I had when I got out was for KFC skin which we got that night for dinner. Sunday and Monday I slept downstairs close to the toilet because I knew I would still be running back and forward and was having some lucid dreams, never seemed to get into a deep sleep that much but still sleeping the whole night.
Gradually each day I have been getting a little better and a bit more energy and not been as tired as the previous day, Wednesday I was at hospital and because my PICC line had been bleeding they had to clean it and while they were picking off the scab from the line the line came out a couple of centimetres and had to get an X-ray to make sure it was still in place ok which it was. It was nice seeing exactly where all it went around my arm, shoulder and chest, was quite interesting to see and explained why you can feel it poking into places. That night it was very uncomfortable in my armpit and had to take a couple of paracetamol to get to sleep. Everything went well in the hospital, counts were all very good and didnt want to see me unless something was wrong and back up to give bloods and drugs ordered on the 11th to start again on the 14th.
Thursday I was able to get for a while down to Conswater to do a couple of things that I needed done and to get a few things too. It was... a challenge, when buying things my speech was slurred and when I stopped my legs did but my body just seemed to keep moving forward and was quite wrecked afterwards (had a skips craving so got skips, they didn't last long).
Generally each day this week I have been getting better a bit more each day and now I feel probably about 80% but I am not going to push myself to get out for more exercise or fresh air, I'm not going to be taking any chances with infection nor push myself as much as I normally would, I have another week before it all starts over again and hopefully this time I will get out on the Friday or have a bit more of a quiet time at the weekend in hospital than I had.
My sleep pattern has changed a bit too I'm staying up later at night and lying in more in the morning, it makes absolutely no difference to anything except that I keep getting woke up in the mornings. I have spent my time mostly playing on WoW catching up on a lot of things that I haven't been doing over the last year on it and I am thoroughly enjoying it at the moment. I have also started watching 24 and I am half way through season 2 now, didn't like season 1 but season 2 is a bit more enjoyable.
But things are going well I guess, as well as they can be and I'm happy most of the time as long as there's no people involved :D