Friday, 14 March 2014
Progress... :D
Tuesday, day of getting my minor surgery and getting the biopsy done!! Didn't feel half as bad as what I had yesterday but still wasn't great had a bit of a cough still, but at least there weren't any fevers, didn't sleep the best again and had about 3 hrs sleep and then intermittent after that, seems to be the general form of it lately. I had to be up at hospital for 11am and it appeared that everyone had to be up at that time! I was the second person taken into the ward so I thought this was a good sign that I might not be too long before getting in to theatre, a lot of time went past and a lot more after that and then the anaesthetist came around and said about going under general anaesthetic which at that point I said that I had only been informed that I was going under local and told him about my chest and cough, he seemed to agree that it was probably best going under local as there could be complications with going under general when you have problems with your chest. Think I have enough.
A bit later a surgeon came in and asked a few questions and wanted to feel where the gland was that was getting removed and I showed him and he said about general and had to explain to him about going for local. Same happened with another surgeon that came in. Then the main surgeon came in and he had obviously been speaking with all the other guys and knew a little bit more of the full picture and he was happy to go for local and would have preferred to go local if he was getting it done, so everyone was happy. It turned out there were complications with one of the earlier surgeries and some people had to be sent home and have to come back another day, thankfully I wasn't one of them. Finally at 5pm, the last person, I was taken round to theatre got hooked up and marked and the anaesthetic and sedative administered, only felt a bit of a wave of tiredness hit me and soon passed and spent most of the time asking the surgeon questions. The main surgeon didn't do much but the younger one that was in training used to be a plastic surgeon so I knew I was going to look good after, he had some problems getting hold of the gland though and the main one had to step in to get it and then he showed me the gland, it was like a wee jelly bean, a red and white one, I don't know what I was expecting but it wasn't quite that.
Then into recovery and back to the ward and had to wait there for a few hours to make sure everything was ok and that was that, off home. Have to leave the plaster on for 2 days and keep it dry, surgeon said to leave the stitches for a week and the nurse said a couple days so i'll leave them for a week, they are dissolvable ones so they come out when they're good and ready.
Wednesday was my mum's 60th birthday so we had a bit of a party for her that night, the morning though I felt a bit rough with coughing but thankfully it wasn't too sore on my neck, my neck just seemed a bit tight and the odd sharp pain but nothing much, nothing I would really need painkillers for. By the end of the day I was shattered and went to bed and 3 hours later I was awake coughing, lay around for a while longer but gave up after another 3 hours of coughing and sleeping and then finally the fever kicking in badly so I got up and went down and watched some Stargate, by about 8 everything had seemed to have settled again and I tried to get another bit of a sleep. But when I woke up the cough kicked in again and the fever came back a bit later. After a while though everything calmed down again, had a bit of a sweat the rest of the day though, but at least I wasn't burning up. Thursday evening I took off the plaster and the cut doesn't look to bad, it looks very tidy and not too red or anything, I'm sure it will change more over the next few days or so with the stitches coming out and getting settled. But I'm very pleased with it.
Friday morning I got my 3 hours sleep and then a dodgy 3 hours after coughing and thinking I should get up to settle it and lying on a few minutes and then doing the same thing over and over for another three hours, although the last hour I felt the fever coming on and was gradually getting more and more sweaty as the night went on, but then with shuffling around the cold air was getting at me and I started to shiver. Was really glad when I got up that I could have a shower as I couldn't the last couple of days and to warm up a bit too.
Today is hospital day, I doubt the biopsy report will be back so will probably just be a quick in and out visit. The usual wait, bloods, wait, doctor routine. But when I was in with the doctor he told me the plans that they had for me, I knew they had a few ideas of what they were going to be doing so was nice to finally know rather than being left in the dark and waiting for results and tests, even though I am still waiting on the biopsy report.
So the plans are to start back on chemo again, which was basically the only path that could be followed, but this time instead of R-CVP or R-CHOP they are going for (R-)ESHAP (unsure about the R part at the moment) and I will have to go in next Wednesday to get a PICC line put in.
Basically with the ESHAP you go in to hospital on the Monday and stay in till the Friday to get basically continuous infusions for four and bit days, the main concern, or at least one of them is with the kidneys so they have to give you a lot of fluids and other things to clear it out of you kidneys as fast as possible. You have to go in every 3-4 weeks depending on how you body copes with the previous one and if the counts are back up to "normal" again after. I don't know how many cycles of that I will be having but I'm going to guess there will be about 6 of them at least. If everything goes the way they should this is the plans, hospital on Wednesday to get the PICC, Friday get the results of the biopsy and Monday start on the chemo.
Doubt I will be doing much to celebrate this at the weekend with the stupid cough, but will have to see and may be able to do something, I'm just looking forward to maybe shifting this cough for a while!!
Monday, 10 March 2014
Lazy Days
So back again and all pretty much the same, hard getting a good sleep at nights with the chest and back getting sore and also sweating up. All seems to be getting gradually worse, although the back pain isn't quite as bad anymore. But that could just be that the chest is much worse and hiding the sore back, it's very tight and I'm very short on breath because of it. I kept it quiet on Monday, wasn't feeling up for very much and there was nothing I needed to do thankfully so stayed in and watched Stargate and played a bit on the computer.
Tuesday turned out to be something very similar too, but I did get a bit of an investigation to do for a while, it was to try and help someone find out who the architect was of the McConnell martin building that is getting torn down in town as part of the UU renovations that are happening over the next couple years. Didn't find out who it was but found out a fair bit about the building and what was there before. It used to be a Hotel until it got hit in the Blitz and the new "art deco" building was built there and been there since, but it turns out there are a lot of art deco buildings in Belfast. Another idea I had (a really bad one) was finding how much time I have put into World of Warcraft over the last 8 years or so, turns out it was near 300 days, and plenty more to come too. Stargate got a good walloping again today, starting to get quite into it now.
Wednesday was a bit of a killing-time-before-my-appointment day, didn't have to be up there until four and my mum was going to be visiting someone while I was at mine. It was in the late afternoon and had the typical bad sleep the night before. The appointment was more or less what I was expecting, going over my medical history and signing a few forms, I was only there for a short while and went out to the car to wait for my mum, didn't ring her so she could spend some time visiting without feeling as if I was rushing her out, so I just sa in the car and read, I've spent plenty of time in the Royal car park when I was younger and killing time there to miss a bit of school so that I didn't go half way in through a class and back for about lunch time. But of course I got told off for not phoning her. Family was over on Wednesday night.
Typical night's sleep where I wake up at stupid o'clock and struggle getting back to sleep and because of that I slept in longer in the morning, which doesn't help with the chest or the back, I really hope I get informed about getting the gland removed soon really need it done by early next week so the results come back for the Friday when I'm back at the hospital again. Another waste of a day doing nothing, don't feel that I'd be capable of doing anything at the moment though so I'm happy enough with the sitting around. Too rough for anything.
Friday came along and today I got a call about coming in to get the biopsy done on Tuesday, will just be a day procedure and will be home that night, don't think it will be as bad as getting the cataracts removed, but with the cough I have at the moment it could be very painful for a while after when I do! Today I did leave the house for a while and went in to town to get my mum's birthday present and card which is next week, I'll not be able to get it next week so thought I'd get it out of the way now. Friday night Caitlin wanted to watch a film on the Kindle, so I took her up to the room and put on Pocahontas 2 for her in the Insyplex and then a bit of tangled after, she seemed to quite enjoy it, lying in bed watching the "big TV". Then when she went off to bed I just watched Stargate again.
Saturday was the first day off antibiotics for near a month and I was going out for a friend's birthday tonight, so I was keeping it as lazy as I could, watched the football and rugby and even had a nap too. Ended up going out and it was a good night even though all I done was basically cough the whole time, was good to see people again. The next day I was pretty good, had the best night's sleep I'd had in ages but the cough continued and basically had another lazy day. After making dinner I started feeling quite rough and felt as if my fever was starting up again so I left it for a while just to make sure and the temperature went up to 38.1, head was sore with coughing so much and just had general aches and pains. When I got in to bed I sat up with the pillows but it only seemed to work one night and the last three have been pretty bad again, so I tried something a bit different, I got the two larger pillows and lay on them and put my head on the smaller one so my head was lower than my chest and the stuff wouldn't roll down into my chest, that seemed to work but the pressure on my glands, head and sinuses wasn't quite worth it, gave up at around six in the morning and just went and had a cup of tea and stuck on Stargate, dozed off the odd time, but even after getting rid of the high temperatures I would have the sweats after. Muscles are all sore too with coughing and my head is still sore.
Shaved it off on Sat
I decided it would be best with having the minor surgery tomorrow that I should phone the emergency helpline and see what they have to say, when the doctor got back to me he said that it was quite important that the biopsy still gets done and if there are any problems that they wont, to get them to ring him and he'll get them to go ahead with it. He also said to get in touch with the GP to get more antibiotics so that was the next thing I done. Got a call back from them about an hour later asking about why etc and he said that the prescription would be ready in about an hour. Went to pick them up and I was so drained, I hadn't ate anything yet and it was the afternoon, just wasn't hungry, just thirsty and still sweaty, I was glad when I got home and had a couple of rounds of toast and then fell asleep a few times as well. One of the times I was woke up was my old usual school looking for me to do a bit of subbing for them, but I told them I wouldn't be back until September at the earliest. Been a year to the week since I had a long stint in a school teaching.
So now I'm going to finish off season six of Stargate
Sunday, 2 March 2014
Do I Have to Pick a Title?
Sunday 23rd February, so following on from the last blog.... Like the rest of them.
In the Evening just kept it fairly quiet and watched Independence Day on TV, the day I was initially diagnosed with Lymphoma coincidently, other things done not mentioned on the previous post about today was that I got my 8th level 90 character on WoW good old Charleis the Camel Hoarder. I also sent off to LoveFilm asking about the pricing changes with the new setup of by post and instant. Hopefully the DVDs will be less than £10, I'd be happy with that. This evening I have felt pretty great! Probably the best I have felt for a few weeks, in such a good mood, still got a cough though, but as long as I'm happy I can have that cough all the time.
Monday I took a trip into town had a nice walk in and it was a pretty good day, my good mood has continued today, it was a pity that when I woke up I was pretty damn sore, my back was sore with the swollen glands digging in, chest was tight also with the glands swelling, jaw's sore with grinding my teeth at night and the lymph system seeming to be blocking up, nose and head or the same reason. But after a while of being up they seem to ease. I didn't spend much time in town and towards the end of being there I was starting to get very tired and just took the bus home. Once home I had a delivery, which was the mount for my camera to attach it to the telescope and had a play around with that. As the day went on from here I just got pretty bad, it just seemed to kick in pretty quickly, I was wanting to get to the quiz tonight as I haven't been about for at least three or four weeks, but as it was getting worse there is no way that I would be able to and enjoy it, but they won anyway, I knew they didn't need me.
Tuesday was a very, very rough day, woke up with the usual aches and pains but when I got up this time nothing seemed to help to ease them. Again very little was done today apart from trying to keep warm and pass the day as fast as possible till I get onto tomorrow. The whole day was terrible but getting gradually more terrible as it went on. I have no appetite, never really did and never really enjoyed eating and only eat when I feel like I should be eating, I could easily go a couple of days without food, as long as I had a glass of water beside me I'd be fine, most of the time. But after dinner this evening my fever started kicking in and was freezing even though the room as very warm. After a while of shivering and breathing being shallow I took my temperature and it was up to 38.77 and thought it may be best to have a couple of paracetamol to try and lower it. Wrapped the blanket around me and basically just lay there half asleep for a couple of hours and it seemed to finally ease, a little at least.Best part about today was getting an invite to a friends engagement party late next month, although it's over in Scotland and can't exactly say i'll go if i'm getting chemo or something like that, i will have to wait a couple of weeks to know a bit more of the long term plans. Worst thing about everything is never being able to make plans, short or long term, this isn't just with the Lymphoma though before with the ITP it was as bad and any time i did try to make plans they fell through because my stomach was playing up or the counts were dangerously low. It's incredibly frustrating. I also got a call to go and see a doctor in the Royal, which I'm quite certain will be for the biopsy, at long last, I don't know if they will do it there and then, but if it is anything like the last time it should be possible as the swollen gland is quite close to the surface and not really around any real major organs.
Basically Wednesday was just killing time before heading over to the hospital, when I got there I discovered it was a nose and throat outpatients clinic, wasn't there very long and I went in to see the doctor who stated at the start "I just wanted you here so I could feel the gland that we will be removing". This was the first I was informed that they would be taking it out, he was surprised I didn't know as much as I was surprised about not being told. I knew this was one of the ways to do the biopsy but you'd think they'd let you know about some minor surgery a little bit before meeting the surgeon. Anyway at least it would give a better idea of what we are actually up against, plus I'll have another scar, the doctor had one himself of what I will have. The evening we had the family over as we do every Wednesday, always nice to see them all. Oh the LoveFilm price is lower than I could have initially thought basically I'm now saving around £41 a year and the sub is what I was paying -£5.99 for the instant as I'm with Prime so works out £7 odd much lower than the £10 I was hoping for.
Thursday I woke up a little grumpy and being whistled at like I'm a dog to come into the room rather than being called like a human certainly didn't help. Nothing too much of interest happened today, kept it very low key, a highlight was shaving my head... and not my beard. Played about for a while with the camera and telescope to get used to that a bit and then later trying to get some pictures of Jupiter, didn't quite work as planned and was a little disappointing, but it was not quite as bad as it sounds, you learn more from doing things wrong that you do from doing things right all the time... hence why I know so much. Also tonight there was some aurora and was visible from Northern Ireland and most of the UK, I wasn't expecting to see anything as the picture will explain, way too much light pollution in Belfast.
Friday was hospital day, worst part was that I woke up during the night for a few hours with turning over in my sleep and making me basically go into a coughing fit, finally got back to sleep again but I think I only managed maybe three hours. Still had a bit of a cough in the morning but nothing too bad thankfully. Hospital was just the usual stuff, was in a good mood again today so that made it a bit better, not that I don't actually enjoy it. When I went in to see the doctor she was just asking the usual questions and said about feeling so bad this week, by the end it was basically go for an x-ray and let's see if there's anything in your chest, which there was at the bottom of my left lung. She gave me a call a bit later about this after I had made my way more or less home and I had to go back later to pick up some antibiotics. The same ones I was on but instead of 2 a day it's up to 3 and another antibiotic, the one that always remind me of milk for some reason, I don't think it tastes like milk or anything, but I just think of it, it also gives a rotten taste in my mouth too. Killed a bit of time and later and just before making my way to hospital it was nice and sunny so I thought I would try out my new sunglasses. but of course not even half way there it clouded over but I still kept them on recording my journey. I ended up walking home so turned out to be quite a long walk. Watched the rugby in the evening and that was basically Friday over. Today I got a call from the nurse up in the Royal about going for my pre op assessment on Wednesday so another step closer to getting that sorted, hopefully won't be long after that that I'll be getting the gland removed.
Saturday and Sunday were basically just lazy days where I sat around watching TV and playing on the computer and spending my Sunday evening writing this for a while, worst part was that I discovered that Premier sports was no longer free on Virgin so I won't be getting my NHL fix on the weekend mornings anymore. Maybe I should do something tomorrow, might just have another lazy day, the weather is a major factor and if I'm not feeling great like I haven't been the last couple of days will definitely coax me to just stay at home. We shall see.