Sunday, 23 February 2014
The start of the second beginning
So the Friday night came and gone, watched The Last Crusade to continue on the Indiana Jones theme that I have had the last few nights. Didn't start my antibiotics tonight, will wait until tomorrow. would have taken the first ones too late in the afternoon and didn't really want to have to split them on half a day i.e. half a day today and half a day at the end, not that it really makes that much of a difference, just don't like doing that.
Next morning wasn't feeling so bad, still a little annoyed at finding out about the lymphoma yesterday, but I still think I should be worse. Back was sore this morning which woke me up and lay on again rather than just getting up and getting paracetamol to clear it, seems to be the thing I do now. When I finally did get up I watched the NHL outdoor stadium match a repeat from earlier in the year and watched the Man City Chelsea game later in the day in the FA Cup and that night some Batman: The Dark Knight Returns Part 1 and 2, was very good and really enjoyed it. Also started playing WoW again today, this always cheers me up. Just feel a bit grumpy and not my normal cheery self.
Sunday came along and didn't do too much today, just stayed in again and watched the Arsenal match and played on the computer, nothing much else, although did run out of cigarettes and didn't bother going and getting more.
Monday was a bit of a busy day, started off by going to the GP to get another sick line which I was hoping I didn't have to get and after telling the doctor she said "this doesn't sound very good at all" and it sort of hit at how bad a situation I was in and got a bit more upset about it and she proceeded to ask what support I had at home and mentioned about different people or groups that I could talk to about it, to be honest I just need to spend a little time having drinks with my friends and I think I'll be back to normal, just a bit shit that I'm on antibiotics for two weeks...
After the GP I went to hospital to hand in a couple of samples of sputum to test for infections and while I was there a couple of the nurses that I've known since starting to go up there about ten years ago asked me how I was and explained everything to them and they both gave me a hug because of it, so even the nurses think this is a pretty big deal, it's really not like them to do anything like that. Next stop was into work to get my sick line photocopied and then sent off. Explaining things to the manager there was quite upsetting but I helped clear my mind talking about it a bit more, I find it hard telling people about it without welling up a bit especially after the way the doctor and nurses have responded to it, but I'm sure it will pass, it is me after all and there's always something wrong with me. Plus... another six weeks off work to find out what's going happen in the long run.
After getting back to the house for some lunch I had to go and pick up my new sunglasses from Halfords (no were near that price though) but when I went down the delivery hadn't arrived yet and popped over to Argos to pick up a couple of WoW Mega Blok figures that I had also ordered. That night I watched Final Destination 5 in the Insyplex, it was disappointing.
Tuesday woke up again with my sore back and felt very rough, got up and it did ease again. Got a call saying that my glasses had arrived and went and picked them up and the rest of the day was spent on the computer and watched the City Barca match and then some Stargate after.
Wednesday, back was once again very sore, the cough is still there as well and doesn't seem to have cleared up that much with being on the antibiotics, but it's only been a few days so will obviously have to give it more time to notice anything. Later in the afternoon I started getting my roughness back again with the fever/cold legs thing, but instead of going to bed for a while I thought I would do the opposite and go out onto the stationary bike for a while to see if that helped, it didn't, maybe even felt worse off after. But I got out onto it for an hour and got some reading done and once back in wrapped myself up to get warm. Although it has cheered me up a bit I done my whole laughing at something I thought of, then forgot what I thought of and started to laugh because I couldn't remember what I was laughing at. That evening I got to watch the Arsenal Bayern match as it was on Sky 1 for some reason.
Thursday very little was done but still had the same feeling like crap in the morning, and seems to be getting worse and also moving into my chest too which is getting a bit sore and tight. I gave myself a bit of a project today to find out a bit more about astrophotography and if I would be able to use the telescope that my dad has and a camera that we have too, turned out that the telescope can be used (which I knew) but the camera can't so if I want to do it really high techy, I will need to get a new camera which will be from about £250 but would be able to get some incredible pics which would be very nice. Instead I settled for a mount to attach to the telescope that I can put the ST200F to and get pics of stuff in the solar system, should keep me busy itself for a while anyway. Just hope it works well enough. That was basically how I spent the day researching that for a suitable camera etc, will just have to wait and think about it.
Breakfast
Friday I didn't do too much, although won a few quid on the Euro Millions so went to the shop to get the money for that and got another one for tonight and stupidly got some cigarettes too which I've been off since Monday... Didn't do very much again today had the usual back pain in the morning which eased once I got up and the throat pain which has been coming on this week, feels like the lymph system is blocked up and putting pressure around my face and head, it's not quite sore, more uncomfortable.
Saturday woke up and back sore once again, another thing I noticed a few days ago was that I seem to be grinding my teeth, my teeth and jaw was sore in the mornings along with my back so I ordered a gum shield that you can mould to fit your mouth better, if anything it will help keep my teeth in one piece. I also keep getting twitches, especially in my left arm, they're very frustrating!! The day was mostly spent watching sport, watched the Chelsea Everton game and once that was over the end of the Italy Scotland rugby game and later after some computering the England Ireland match, all very good to watch even if all the results didn't go my way. That night started playing Rayman Legends and then watched some more Stargate.
When I woke up on Sunday I felt rough, back was sore and the lymph system was all blocked in my neck and throat, was very unpleasant, once I got up and took some paracetamol (thankfully that's as strong as I need) the back eased but the blockedness lingered on for a while. Watched the World Superbike races from the early morning in which Laverty won race 1 and was doing great in race 2 until his engine blew up, a fantastic result for him, winning on his debut for the new bike.
Mentally feeling back to normal again and really wanted to head out on Saturday night but I want to make sure that I'm rid of this bug, might be able to get to the quiz on Monday but after the way I was feeling this morning it put a bit of doubt into my head. Still haven't heard anything from the hospital about a date for the biopsy, will probably hear about it sometime this week and back up to hospital for the review on Friday anyway, hopefully no more antibiotics so I can get out and get blootered next weekend. Was a tough start to the week but I've settled and cheered up thoroughly as the weeks went on and felt pretty good on Saturday, feeling wise, physically I'm gradually getting worse and feeling really bad at times, really bad.
Friday, 14 February 2014
The Bug III
I'll keep this one short but basically since the last post I've had highs and lows, but all in the same days, mostly the mornings I have been feeling worst, with either the sore back or the cough waking me up at about 6 or 6.30 and the only time that it wasn't is if I was out drinking the night before. Some days I have been coughing all day and others it would just be the morning and then clear up once I get out of bed, similarly with the back pain. Some days I would just lie on in bed for hours and know that if I was to get up it would clear up, but still just lie on. Other mornings I would get up and things would be great for the rest of the day. Others at about 1-2 I would start getting my chill and have to go to bed because I felt so rough.
Skipping on to Friday 14th February I woke up at 6.20 with a coughing fit and took a few minutes to settle, but from my experience I knew that a locket would settle it pretty quickly from the fit state. What caused this was lying on the one side all night and then just as I was waking, shifting to the other side and that's what seems to trigger it. The cough continued as a tickle for a few hours after and I've found that even talking has made me cough a bit too.
After a short breakfast I went to hospital to get the results of the PET scan that I had last week up in the Royal, and thankfully didn't have to wait around too long to get in to see the doc, not just any doctor though, the head doctor for it, this wasn't going to be a simple in and out visit. Once I got in with him he was asking how I was and I explained about the bug and that the antibiotics just seemed to make it worse if anything and started off the cough, he then asked again "how are YOU?" after that explaining about feeling rough, the pains, the blocked face and neck, and the tiredness that I had linked to the lymphoma rather than the bug. Once I had finished what I was saying he moved his seat closer *sigh* not good and he started to talk about the scan results.
Firstly he said, well there are still swollen glands, some in your lunges and one in your neck, had a feel and there seemed to be a lump but nothing too much, he had a feel and said it was quite small too, then he went on to talk about them and what they would do next. So the next step is to get a biopsy on one of the glands and to try and find out exactly what is going on, he continued to say that he wants to get that done urgently.
He continued on to say what he thought of the whole situation and he was obviously a bit disappointed himself that plan a and b had not worked, he said that the initial diagnosis of Marginal Zone Lymphoma is a very mild form of lymphoma and the RCVP should have done the trick to clear it up and definitely the RCHOP should have worked and continued to say it's "very rare" that they would not do the job. Very rare... sums up the story of my life, my dad later said "it wouldn't be you if you couldn't find the rarest things". (maybe not quite as politely)
Basically now is just a waiting game again to try and find out what is wrong with me, things seem to be pointing in the lymphoma direction, but there is still the chance that it is just the bug that is causing it, may even just be that the glands are still swollen from months ago and they just haven't cleared.
Seems like everything is back to square one, I don't think I am as upset as what I should be and the most annoying thing is that I am on antibiotics for two weeks so can't even go out and get drunk so I don't feel so bad in the mornings. Ah well summer is coming.
Saturday, 8 February 2014
The Bug II
Back again...
Sunday the 2nd was much the same as Saturday, got up and didn't feel too bad, but once again in the afternoon felt rough and went to bed for a while to try and warm up, watched the rugby and that night decided to stay up and watch the Super Bowl, quite a waste of time if I'm honest but it's the first time I've had the opportunity to watch it so made the most of it, pity I had to get up early in the morning to go to the GP. At the GP I was to pick up the prescription for my antibiotics and hopefully they will do the trick of getting rid of this, while I was there I also got my sick line for another couple of weeks, which I will have hopefully got the all clear of the lymphoma and be able to get back to work again.
Got soaked again which I'm sure will not help with things but not much I could have done about this, but when I got home I got changed into something more comfortable and relaxed for the rest of the day. Didn't feel up for going to the quiz and as I wanted a quiet couple of weeks I didn't.
Tuesday morning I woke up with coughing and a sore back and lay around for a few hours, which I'm sure was a terrible idea, if I had have just got up it would have cleared much faster, as when I did finally get up it did. I had to take a trip into work to hand in the sick line then send it off to ESA afterwards, the walk seemed to do me the world of good though felt much better on the way there, but on the way home I just wanted to get home as soon as possible and when I got back to the house I was having my hot/cold thing again and jumped into bed for a bit to try and spread the heat and fell asleep for a while too.
Similarly on Tuesday I woke up about 6 again coughing and a sore back, but this time I did get up and that was great, got rid of the sore back, but the coughing continued for the rest of the day and had my hot/cold thing once again in the afternoon, had another shower which seemed to help spread the heat, my appetite today has been pretty bad too, barely ate anything and didn't even want my normal breakfast (cereal) and ended up just having a banana and apple, no lunch and a couple of sausage rolls for dinner. Had a pretty early night as well.
Thursday morning I didn't have my sore back but I was still coughing, the coughing seems to be getting worse, I hope it's just my body trying to fight the infection and a sign of getting better rather than it getting worse. Thursday was another bit of a waste of a day doing nothing but sitting around reading and watching films and didn't eat much again today either. Had an early night and my body was more than willing to comply, I honestly think I could lie around sleeping all day and still have a good night's sleep.
Friday morning I was up at the Royal for my PET scan, brought my kindle and got there early as I always do and they seen me early, there must have been a cancelation or something. But I was told I had to lie still and wasn't allowed to read because of the injection I got. I didn't mind it, it gave me an hour to lie there and fall asleep again and once into the PET scan slept for another 20 mins, flew in because of it. Was still coughing a fair amount today and chest was tight, reminiscent of back in May when it all started. I decided to walk into town afterwards and have a nosey around, didn't stay long and then walked home, everything seemed to feel fine apart from the cough. That is until later in the afternoon when I started to feel the glands all block up again and my head getting sore and tired and ended up in bed again and fell asleep until tea time. In the evening watched the Ulster match and made another stop motion, then watched Another Earth in the Insyplex afterwards, a bit of reading before bed then out cold.
Barometer off the scale
Had a good sleep again tonight, I must really need my sleep as it's all I can seem to do, that is if my back doesn't get sore or the cough start up too much, but if I change sides that I'm lying on I can really feel the lunges shifting and a bit of pain in them, also feels a bit like I'm breathing fluid, which is unpleasant. Felt pretty ok for most of the day so far, apart from a period before dinner where I had to go to bed for a while and had a bit of a nap. In the evening I was supposed to be going out to meet up with some people from twitter but I was in no way well enough to go and I'm sure if I did they would probably catch something off me, or well, I hope they would as that would prove that it is a bug and not the lymphoma. But I didn't take that chance either way and stayed in and wrote this, now I just need to find something to watch, not that I don't have plenty it's just finding the right thing for my frame of mind this evening.
I hope the ones that went out have/had a good night and aren't too rough in the morning.
This week hasn't helped settle my mind as to what is wrong with me, the antibiotics haven't seemed to have done anything apart from making my cough worse and I am worse now than when I started on them. The symptoms are way too similar to how I was feeling in May, but then I did have a virus then so it could just be another one... I get the scan results back next Friday so it is going to be a long week waiting for them to come back to possibly rule out one thing (the lymphoma) but then if it is the virus, I have no immune system to get rid of it and if it is an infection antibiotics don't seem to be doing the job. Long week is gonna be long.
Sunday, 2 February 2014
The Bug
As I said on the 20th in "And so it begins" that I was unwell for a couple of days being sick, which more than likely was just a bug but then I go on to say about not being "recovered completely and am seemingly picking up a few more problems". Well also in this post I did mention a few other things such as being sore and tired and being grumpy, what I didn't mention was that this is the same as how I felt when I first started getting sick back in May. The pain that I have in the different places is the same the grogginess is the same and even my chest, feels the same, the sporadic tiredness is also the same and the chills are the same, although maybe not quite as bad this time around so far.
I thought that the lymphoma was possibly starting up again about the 15th and since then the problems that I've been having have just been getting worse and more of them. It was always just a bit of a guess until Thursday 23rd when I really started to feel rough, so rough that I had to go to bed to sleep and evenly disperse my body temperature, as my core seemed to be extremely warm, but my extremities were freezing and making me shiver a bit. That evening I didn't seem to get much better at all, this time though I was extremely warm and sweaty and even that night when I woke up from a sleep and was drenched in sweat.
Friday was the day that I feel that things began to fall in to place and I was almost certain that it is the Lymphoma, after having spells of being cold and warm, and bouts of tiredness throughout the day, during the Arsenal match I was still having the pains that I would have, my neck, left arm and right leg, the same ones that had most of the pains in September when the chemo wasn't working and the lumps where sprouting up each day. I have a check around firstly in my neck and easily spotted a couple of glands either side of my throat, even though they were only wee small ones they were noticeable. Next was my arm, so had a good feel around my armpit and I remembered that previously when I had the pain down my arm it wasn't quite in my armpit but down a bit further, checked there and bingo, again, only a fairly small one, but one none the less. Then finally was my leg and found this one pretty quickly and it was just in my groin, same as before. During the Arsenal match I got very cold and started shivering again, so after, I went upstairs and wrapped myself up to try and warm up a bit.
That night though I was too warm, ok the house was quite warm, but not that warm. I was very tired when I got to bed only about 12 but I couldn't sleep and decided to tell someone what was going on. I wasn't sure what to do, should I tell people? Would it be any point telling them so they can worry for the next month until the results from my scan get back? I wasn't sure. She did help and put my mind at rest a bit, was more worried about telling my mum than anything else, I knew she would be much more upset than I will ever be if it is the lymphoma, and even if it isn't she will be thinking the worst.
Saturday morning I just couldn't wake up, but finally dragged myself out of bed at about 11 and felt pretty rough, mostly my neck and head, but as today went on I did get gradually colder and more tired and ended up going into bed for an hour or so which seemed to have helped and since then I have been picking up and up and now actually feel pretty much normal, for a while at least. The rest of the night I had felt pretty good but I did have a couple of stages where I did crash a little and I was quite glad I decided not to do anything and stay in.
Sunday morning when I woke up my back pains where there, exactly where the swollen glands where the first time around and as before getting up and moving around loosened it and it eased up. Later in the afternoon I once again had the cold but warm feeling, so I lay down for a while in bed and watched the football, it wasn't too bad this time around though and seemed to pass fairly quickly. The evening was much better, ok I was a little tired but I think that may have been just being tired rather than anything to do with the bug. But tomorrow I am up at hospital to see the dermatologist, so I think I will pop up to see my normal doctor too about the latest problems.
I struggled getting to sleep the night before but it was just down to having a sporadic sleep pattern lately and with the early start to go to hospital I knew I would crash later, first appointment went fine and in typical Alan fashion today I feel fine, no pains, no chills, nothing, but I was still going to go up to the normal docs and let them know what has been going on. They took bloods and had a feel for the lumps and could barely feel them and basically by the end they said what I was expecting, we'll have to wait for the scan, which will be in a couple of weeks. But generally today I have felt pretty good although feeling a bit naff that I had went to hospital, but I know it was for the best and I'm sure it has probably made me feel a bit better as well knowing that they weren't too concerned about it.
Tuesday I felt pretty much normal most the day, just a bit tired and did get a bit of a fever during the afternoon and again in the evening, but nothing too bad and nothing that I couldn't cope with.
Wednesday was quite a nice day, not weather-wise but I felt pretty good, and went for a long walk which in fact absolutely wrecked me, my legs were in pieces and by the end could barely walk for the rest of the day, I did have a bit of a fever again in the evening and had a fairly early night too. Thursday I was still incredibly sore and continued to have my fever and my chest was getting a little tight and the continued pain around my neck as if it was tight. Later in the day my arms and legs continued to be sore and rather than a muscle pain it felt more like the glands and lymph system that where blocked up and that it was that that was stretching rather than the muscles. Late in the afternoon and evening I had another fever and lay in bed watching a couple films and then suddenly with warming up in bed, all my pains went away, just like that, couldn't quite believe how sudden the change was, but at least it was gone.
Friday morning I was back up at hospital for my normal check up and all the counts seemed pretty good, I said to the doctor again that I'm still getting the pains and fevers and generally just not feeling well and he had a look at a lot of other counts that even I had never even heard of, I think it was the CPD count which was 5 three weeks ago, 30 on Monday and 50 today, apparently this is a sign that you have an infection, but doesn't help finding out which infection, so they have stuck me on some antibiotics to hopefully clear it up before the scan next Friday. Most of Friday I felt ok, bit of a fever again in the afternoon and then got quite tired in the evening just before I was going out. I think the best thing about today was that there were signs that it isn't the lymphoma playing up but in fact just a bug I guess I should be happy about this and maybe should just keep it quiet over the next couple of weeks.
The following day I spent most of the time lazing around watching the football and rugby before going to a friend's engagement party, there, I felt a bit rotten and my fever was really kicking in badly, so I left quite early, rather than taking any unnecessary risks and regretting it, got home, read for a little and finally dozed off.
Not been an easy few weeks but it hasn't exactly stopped me enjoying myself, but not long now until the chemo has all wore off and things do finally return to "normal" again and get back to work... just a couple more weeks.