Wednesday, 20 November 2013
With a little help from my friends
So once again Thursday came along and today I wanted to have a fairly quiet day, with all the running around and "stressing" I had been doing the last few days it was nice to finally get it over and done with for another while and be able to relax a little over today and the weekend. Had all the things I needed to send off, put them in an envelope and popped them into the post box, now to wait.
Some more forms did arrive today but they were not for me to fill in, they were for my dad so I made a copy of all the info that he needed to fill them in (and more) gave him the forms and the copies... "Oh we'll do that sometime together" why we? You have everything I can possibly input and you have to fill them in and it's for you I won't gain anything from this... He was so enthusiastic to get these forms too, but I think he expected that it was me who had to fill them in. Today would have been a good day to work on the last blog as I was just sitting around and for a while I was literally staring into space, not always a bad thing as it can be quite relaxing in a way not thinking about anything in particular and just being, give it a go sometime. I've noticed over the last week that I haven't been drinking as much fluids as I normally would, think it's been with all the running around so I will drastically need to improve on that if I want to do all the things that I've got pencilled in for the weekend. But Thursday night was going to be a quiet night so I stayed in and watched The Last Stand in the Insyplex and had some snacks and off to bed.
This week though I've still been getting the problems with the sore arms and legs and night sweats as well, they seem to be getting gradually worse too, but nothing much can be done about that for a couple of weeks and I certainly wasn't going to let it put a downer on my weekend which I was thoroughly looking forward to. Friday started with a nice lie in, which I don't think exactly helped with things as i felt like crap, but after breakfast I went round to check up on my friend Tim who had the heart surgery and he was looking really well and in good form and seems to be making a swift recovery back to 100% thankfully won't be long until he is up and about again.
In the evening I just went to a friend's house and had a few drinks but wasn't feeling 100% felt very blocked up and congested in my belly and nothing seemed to be sitting right, so the next day I took some laxatives which seemed to help with that. My neck and head were also really sore, this was another thing that would have played up with the lymphoma so... so. Made the most of my O2 priority moments app again by getting a discount on dominos for us all, didn't last long though, was quickly scoffed.
Saturday nothing much happened had a long lie in and my niece was over with a cold so I had been told that they were going to go out and waited for a while until I realised that they weren't going out so had to go down and take the chance, I didn't mind, but if it could have been avoided that would be preferable, she was feeling down in the dumps though and all the others had left her in the house while they went over into the park but at least she had me and her granda there to cheer her up.
The Saturday evening I had made plans to go and watch my friends band, Cursed Sun, hadn't been to see them in a while and there were a few works ones and others that I knew would be going so I headed round to that, was an early start and knew I was going to be meeting other people after so I had to "pace myself"... chuckle. The second place we went was to Morrison's and met the two James there and we went upstairs as it was one of their relatives birthday, I didn't know them but I know some of the family and we just got our own table and had some drinks and cake. By this stage I had already had an ample amount of booze, but it was still early and we headed round to the Hudson Bar for more and after a while we finally decided that was enough... but I didn't fall over... like someone else, haha but one of us did get a chip with mayo on it flung at their head which turned out to be quite amusing, I got the blame of it initially surprisingly and then we got home.
Was very happy that night just with catching up with some of my friends and just felt how much that they have really helped me over the last few months and I don't feel as if I have told them enough, just how much I appreciate it and how much they have helped me through this "challenging time" which in actual fact isn't, because of them (and some people that may not even realise it!). I'm not very good with the emotional, soppy stuff so I'm just going to say, thank you.
Sunday came along and I wasn't feeling half as rough as I should have been after the amount of alcohol that was absorbed, although after drinking some ale I think I have a bit of a taste for it now, even though one of them tasted what I would imagine perfume to taste like. But I have a goal of finishing my Star Wars book before Tuesday so I can start a new one in hospital, spent most of the day doing that and I think there was a bit of TV too a quiet day.
Monday I had to go up to hospital to get my bloods checked as I was going into surgery the next day to get my cataracts removed, went up to the hospital and there was no problems with that as I'd already booked it in advance and they supplied me with some evidence that I am on chemo for the ESA too, counts where all very good, the white cells and neutrophils where maybe a bit on the low side but still within the required boundaries so I got the green light to get the surgery, got a fair welt of the book read by that stage and went home to continue reading to finish it off and that was basically Monday as far as I can remember.
Surgery day!! I wasn't too nervous about this, if anything I was more calm than normal, but reading through the letter I realised I was supposed to phone them to make sure I wanted the appointment, I'm not used of having to do this and considering I had to go up to the hospital the day before to get my counts checked, I think they wouldn't mind if I phoned them up 2 hours before I was due to be there...
Movember Update 19/11/13
Anyway I turned up handed in the form and they asked me to take a seat, didn't seem to matter, waited about an hour and then went through to speak with the doctor who wanted to make sure it was ok with my doctor as they hadn't got back to him, but since he sent off to ask them I have changed doctor to the new lymphoma doctor which he didn't know about and I had told him that they were happy if he was happy and that the counts where blah blah and everything is technically ok to go ahead. So everybody was happy that everybody else was happy that everybody was happy so we went ahead. Waited a bit longer and went into the nurse to get the eye drops and then a bit more of a wait to go in and get it done.
*if you're squeamish you may want to skip this paragraph*
When I went into the final stage they put me down on a table and then the anaesthetist came in to numb the eye, this was certainly one of the more unpleasant things I have experienced, guy coming at your eye with a needle about an inch or so long and sticking it in just beside it in the wee pink part at your nose, I could barely keep my eye open and I could feel him moving it around beside and behind the eye. Once he put that in, that was his job done, could still move it and blink and see ok. They brought me into the next room where they hooked me up to the heart monitor to make sure I wasn't freaking out, heart rate seemed to stay quite low in the 60s which I was surprised about, thought it would have shot up, maybe it did at time but I was too busy bricking myself, they seemed to pin my eyelids open, not exactly sure how but u did feel something that seemed to be grasping the back of my eye in the four corners, really not sure though as well I couldn't see anything but shadows and a bright light. They put in a few more eye drops to wash it out a bit more but they made me jump and then he realised I could still feel and said that because I was young the anaesthetic mustn't have worked as well but he continued on. Then there seemed to be a bit of pulling at the front of my eye as they cut the skin in from of the eye and it felt what pulling an eyelash feels like... but on the actual eye some more fluids put on and then when I'm guessing they put in the plastic lens, that was quite sore, a bit of looking around and then that was basically it, they slapped on a mask over the eye and took me into the waiting area. Not sure if this is what happened but this is what it felt like what happened.
It was more uncomfortable rather than being sore and a very unpleasant experience all-round, but it's done now... the cover they put over my eye was see through as well, I was expecting it to be a type of plaster over it, but I've to keep it on until morning and then to use it at night time sleeping.
That evening I just sat and watched TV as well as I could as the mask and the tape were blocking from seeing too well. But at least I still got to see the England Germany game which I'd been looking forward to for a few days, just a bit of a pity Germany didn't put out their main team and was more testing for some players for the bench that anything, but they ended up winning anyway and then a spot of Midsomer Murders to round off the night and then off to bed.
Wednesday, 20 November 2013
The start of the running around
So once again I have been pretty quiet for a while, a week and a half or so, so we'll see how I do this one, might have to split it in two or just condense it down a little.
On Thursday night I done a bit of research into the SSP and ESA thing and as I said I wasn't quite sure how it was going to work but it would one way or another. But wasn't going to worry about it too much until after my chemo cleared up over the weekend. That night I did go and get some snacks for over the weekend and some supplies for a new mini project I am starting up on, you'll see that a little later though.
On Friday morning had my normal tri-weekly ritual of going to the hospital nice and early to get the counts checked and speak with the doctor at which point I told them about the problems that I've been having over the last few weeks with what I think is the glands and the feeling pretty crap, not as bad as what I was in August or September but still going in that direction. They were a bit concerned about it and were thinking of pushing forward the scan that I have later in the month (21st) to see if the chemo is working or not, but I told them not to as I've a few other appointments that it could clash with and may not be a good idea. They were happy enough with this and so was I so they have left it as it is.
that window....
After the initial appointment I went into town and to work and told them about the situation with the SSP and they gave me an SSP1 form and an ESA form as well, this should have came from head office and not from them but they were very helpful in doing so and I popped round to California for some lunch before going back to hospital to get the chemo. There was nothing of any real interest this time around when it came to the whole hospital day out and when I got home I started feeling rough, had some food and just lay around in bed and at the computer that evening. Woke up at about 2 feeling very nauseous and took another anti sickness tablet and that seemed to do the trick, combined with falling asleep, until morning.
Movember
On the Saturday when I got up had breakfast and took my tablets, but never took my anti sickness ones, in the end this turned out to be a good idea, felt much better the rest of the day for it and didn't get nauseous at all, I had planned to hold off and if I did take some but thankfully that was not needed. Seen a few offers on things so ended up ordering my secret Santa pressie, or what I plan to use as my secret Santa pressie but will have to wait just to make sure that I can use it for that person. Not find out for a few weeks yet. But most of today was spent reading and lying around not doing very much, was still a bit run down from the chemo yesterday.
Sunday morning I got up and still no need for the anti sickness tablets thankfully and went ahead and had breakfast and washed nice and early, not because I was going anywhere, just to feel sparkling clean at such an early stage in the day. In the early afternoon I was beginning my new mini project, which I had asked my mum to help me with but she was a bit busy with the kids so I made a start on it myself. It was making cookies/biscuits, was a very straight forward task as, well, it was the first time that I had done anything like that, the only change I had to make to the recipe was that instead of using Golden Syrup, I used honey... seemed to work just fine. They were quite tasty although I couldn't eat many or much of them, they were a bit too sweet for my liking but I still ate two of them. Later in the day I watched the MotoGP and read, that was basically my day.
Monday morning I had to phone up to get some advice on the ESA/SSP situation but the person I needed to talk to wasn't in again today, so instead I just started filling in the forms myself anyway and if they weren't the right ones ah well, it gave me something to do anyway. Got a bit bored at one stage doing that and decided to go for a bit of a walk, which wrecked me, got really tired and sore very quick, think this is a combination of the chemo, sitting around and the lymphoma playing up again, but I got home and went for a bit of a sleep again. After dinner I was in two minds about going to the quiz, I wanted to go but then I was up early in the morning to go to the GP for some blood tests but finally decided at the very last minute I would go, so I just drove over and it was only Victoria, Rosemary and me that went. We done very well considering it was only the 3 of us, we came 3rd with only 3 points difference from first and won a bottle of wine. By the end I was pretty tired and needed to get home to sleep but of course once I got into bed I was wide awake and took a while to get over.
Tuesday morning was a nice early start, I forgot how good early starts made me feel, I quite like them, considering I'm definitively more of a night person. Got round to the GP for the blood tests to make sure I wasn't a druggy and to get base lines of my counts and booked into the open surgery too to get a new sick line, when I got home I phoned up about getting the help with ESA and they said to call round, which after having breakfast I did and we went through the notes and got them completed and after that went into town to drop my sick line into work and ended up going to watch Philomena, wasn't a bad film, but wasn't great either, it was watchable but it wasn't a Sci-Fi so not my type of film. When I got home and after a bit of sitting around and reading I looked out and seen this lovely moon out the front and got the telescope and took a few snaps of that, it was really night with the craters along the sunrise, was nice to see again. Think I'll get the telescope out a bit more than what I have. One thing I did find out today was that I needed a sick line back dated from when I need to apply for the ESA so that means another early morning tomorrow to get that.
Just like yesterday first thing I done was get up and go to the GP to get a back dated sick line, had a photocopy of the one that I handed into work yesterday and I was able to get that no bother. After I headed into hospital to request a letter from them as evidence for the reasons to not be working, I was only there a couple of minutes and away, but on the way back home I started feeling quite rough, had thought of maybe doing a few things but thought better and just went straight on home, had breakfast and looked up where I needed to send the ESA forms to, which unfortunately I turned out there was nowhere to send those specific ones and needed to get in contact with the Social Security Agency and I ended up just doing it over the phone with the lady, which only took about 20 minutes as I had everything that I needed right there in front of me which was quite handy, as my handwriting isn't exactly... neat... But after the call in which I found out I needed originals of the sick lines to send off so I called work to see if they still had the one I gave in yesterday and that I would pick it up a bit later, had lunch and headed back to there to pick it up, so all sorted now, just need to send them off.
Thursday, 7 November 2013
Second Last Chance
So as I said I would do on Sunday night I watched 2012, I've always really enjoyed the show, it may be a bit ridiculous at times but it's fun, a nice end of the world story. Sleep wasn't too bad that night but over the last while I have been getting the night sweats and I think they've been gradually getting worse over the last couple of weeks, especially since the colder nights have come about and I'm snuggled up more under the blankets.
Monday I wasn't quite sure what to do, but then I remembered about a pathway that I had never been to before at the top of the Cregagh Road, so I began to walk up to there. It was a tough walk, my legs weren't exactly being nice to me and when I looked up in the direction of where the path leads to I knew it was going to be a struggle, a real struggle. But I went on in anyway and it was very, very muddy at the start at least and there didn't seem to be anything that good about the place apart from a river flowing beside you. As I went further on up then it started getting much nicer with lots of waterfalls and lots of greenery, but that made the path much worse, covered in damn slippy leaves and steps, a LOT of steps and I was holding on for my life going up and down them, some with what could only be called cliffs to the side of the dangerous path. But some of the sights were really nice, certainly made up for the crapping-yourself-going-down-the-steep-slippy-steps-with-a-20-foot-drop-beside-you moments. I got to the top and crossed under the road via a bridge and walked around the other side, unless I missed something, there wasn't much there apart from a path that went in a fairly small circle and up a hill to Lagan College.
So I retraced my steps back to the Cregagh Glen but this time took the routes that I didn't take on the way up, one route, took me to the top of a very, very steep hill... and just stopped, for no real purpose, I'll have nightmares about coming down that, how I didn't fall is all down to my "hold tight or die" grip I had on the wobbly railing. The next one I went up was much better it took me up into a field, wasn't sure if I should be there or not but there was no sign saying I shouldn't. I did remember back to when I was younger and hanging around Leadhill there was a bull in one of the fields so that was the first thing that came to mind, I walked up the hill took a few picks and came back down fairly swiftly, just in case. Once down I walked on home and knew I was going to suffer for a while from that. I won't be doing it for a long time, as much as I did enjoy it.
After lunch went for a bit of a sleep and had made plans to go to the quiz tonight again, so called over to Victoria's and got a lift over and met up with Rosemary, Nuala and Cobbe. Think Victoria regretted driving, but after we had won a bottle of wine and some of us went back and drank that. Next morning got moaned at for waking my mum up during the night when I got home, so I obviously apologised for that and felt bad for doing it in the first place. I also discovered, before going to the quiz that I hadn't received any of the SSP which I thought and was told that I would be getting so I have a feeling that that may turn into a bit of a moan later in the week.
Tuesday afternoon I had my appointment with the new GP surgery, it was just with the nurse for a bit of an introduction to the new place and to get some details off me, what they weren't expecting was having to write an essay on my medical history, for something they were expecting to be twenty minutes, turned into 50 minutes, feel sorry for anyone that was supposed to be after me. But it went well and have already been booked in for a couple of other appointments over the next few weeks. When I got home I watched Moneyball with Brad Pit, was a pretty good show and that night in the Insyplex I watched Seven Psychopaths and Olympus has Fallen, both also pretty enjoyable shows, I was glad to go to bed though so after reading and finishing off my book, Castle Vroman, I went to sleep.
Yesterday a guy called to the house to do a survey but I told him that I didn't have the time to do it then but he could call back again at another time, so he had said that he would call in today at about 10, so I got up showered and fed and was waiting around watching Homeland until he came, but I had a couple of things that had to get done one was to get a list of repeat prescriptions for the GP and the other was to pick up some stuff from Tesco, I was getting ready to leave when he finally did call, at about 11.15. He was a nice guy and got through it pretty fast and gave me the obligatory free pen afterwards. My legs where still pretty sore from Monday so I ended up just taking the car to Tesco, that and I probably would have struggled bringing the stuff back home after if I wasn't. But on the way out I was looking for the old car rather than the new one and almost walked past it when I realised that it looked too familiar.
When I got back home I phoned up the old GP to get the list of the prescriptions and of course one thing they said when I was in the meeting with the surgery manager was "we never hang up on people" well... that happened again, I heard their voices and then beeeeeeeeeeeep. So I ended up just going to the chemist to get a list of him, but it wasn't exactly what I was after, but while I was there I got a sandwich in the shop beside it, it was massive there's one girl that seems to think I need a good feeding and piles on twice as much as the other, I couldn't even finish it, but I did give it a good go! Most of the evening I was reading my new book that I was given by James, I've been surprised how fast I've got into it, as normally with a new series it takes a few days, but I've been warped into it so fast even from the first couple of pages. Don't think it will last too long.
That night I also discovered the reason why my SSP hadn't went in, as I had two jobs, both of which paid just under the minimum amount that I would need to get to qualify for SSP, but as they are completely separate I can't get it even though I earn more (in total) than the minimum requirement, so it looks like I have to go down the route of getting ESA, this could work out in my favour though, as I could slowly build up my ability of getting back to work after all this is over, while still getting some money for being sick. But I will have to make a few calls tomorrow to see what my options are. I'm more annoyed at work, not the ones I work with, but the ones that are in charge of paying me they were supposedly getting in contact with me when the CSP was up and to inform me about the SSP which should have been about 6 weeks ago at the latest, but they never. This would all have been cleared up without any bother then rather than now.
So on Thursday morning I firstly had a lie in cause I felt like I needed one, didn't feel too great at all the night sweats were pretty bad and my arms and legs were sore and even my back where the glands that had swollen was a bit sore too, once up and about most of the things seemed to settle and I made a few phone calls and unfortunately the person I needed wasn't there so will have to call back again tomorrow or Monday to speak with her, but I'll be busy most of tomorrow with getting the chemo, for some reason I'm not really looking forward to this one, I doubt it can possibly be as bad as the previous one, but I'm not looking forward to taking the antisickness tablets and the vein they put the last one into has still not fully recovered and is still sore and feels blocked up.
But I went down to the old GP and picked up the list, which only has half the ones that I get on repeat, not surprised, but at least with the combination of what they gave me and what the chemist gave should cover it. But the walk there was terrible, I felt woeful, everything was sore, my knees, ankles, hips and even my feet were all sore and then the sun shining in my eyes and the wind blowing in them just made them water a ridiculous amount. But finally got home looked up a few things and then started to read, I'm tempted to go for a bit of a walk tonight to pick up some stuff to eat tomorrow evening and Saturday for while I'm basically housebound, but the thought of going out into the cold is just too much, so I may just sit and read the rest of the night, or watch a film... I'm not sure.
Sunday, 3 November 2013
Last Chance
Thursday evening came along and we went up to my sister's house for dinner and round to Wallace Park for the event on in there, was a good night seeing the marching, skeleton drummers and everyone dressed up. There were some fantastic costumes, I didn't dress up and it was as well I didn't the others lost me a few times, even though I was right beside them, so in the dark wearing black would have been a nightmare... or great for them. And at the end a nice fireworks display. We returned back to my sister's house after letting the crowds disperse and had some cream and apple tart and then finally back home to ours.
That night trying to sleep wasn't exactly the easiest, my room was really cold but I was really warm. Under the sheets I got sweaty and out of them it just froze me, I ended up settling for the sweaty rather than freezing. Remembered that the Black Friday sales will be this month and from reports so far it will start on the 25th, I always really enjoy this trying to find the deals and getting them before they sell out and the excitement of not knowing what will crop up. I'm going to have to make a list of things that I would quite like and a price I would like it at and not have to look it up before ordering it to make sure if it is a good deal or not, looking forward to it. Will have most of my Christmas shopping done before then though.
Friday I got to call round to my friends house to see how he was, I had only planned to stay for a little while but ended up being there for over an hour, was great to see him again and I'm sure I'll be back to pestering him more and more over the next couple of weeks and he seems to be doing quite well after his surgery. I also wanted to call into work to inform them of the good news that I should be back at the start of January. I walked in most of the way but did get the bus for the last of it. When I got in it was the boss boss there and haven't spoken to her properly in a while and she told me that she will be going off soon after I get back, she'll be going on maternity leave! So it will about two years nearly since we last worked together apart from a month or two at the start of next year, probably longer actually.
Decided to walk home as it was a lovely crisp autumn afternoon and went for a bit of a nap when I did get home. That evening I was feeling quite restless and wanted to do something, need to make the most of the last weekend I will be able to, with getting the chemo next week and then I might be able to do something the week after but then I'll be getting the cataract surgery and won't be able to do anything for the month after and then the final chemo on the 20th, if everything goes to plan... looking forward to Christmas and more so next year. The aftermath with the ITP will be interesting to see how things develop with that.
got more free food in Tilt
That evening we went to Tilt on the Ormeau Road for few drinks and while I was out having a smoke I was looking down the road and seen a car pass another car and heard a massive crash, at first I thought it was a clash of wing mirrors but then I seen this shadow fly out from the side and land on the footpath, some guy had stepped out from behind the parked car and got hit by a car passing. I went down to see what was happening and everyone was just walking on past so I went over and helped support his neck and some pressure on his wounds to stop them bleeding as much until the ambulance had arrived, there was a massive dent in his head and a deep cut down his face. He was knocked out for a while but came to a few minutes later and started trying to get up but the three us where able to keep him there. I gave my number to one of his friends to let me know how things are later for him, but I haven't heard anything yet, I really hope he is ok. I was shaky after for a while but I think that was more down to holding his head for so long rather than nerves or anything like that.
Apart from that incident it was a pretty good night and had a good lie in bed the next day and just watched some TV and read, that evening watched the Ulster game and then The Eagle and Match of the Day and off to bed. Couldn't have stayed up late at all was way too tired. Once Sunday came I felt a fair bit sharper than I did on Saturday, got up and had breakfast and spent most of the day doing the same as I did yesterday, a lot of reading and a little TV and got the last of the Christmas presents for the kids, so I've only a handful of things to get now. Went for a nap in the afternoon and then started on this after dinner. Tonight I think I will watch 2012 think that is on TV and I always enjoy those apocalyptic style films.
Until next time /salute