Monday, 30 December 2019
Let's get started
I hope you all have had a nice Christmas, I had a great one despite being in hospital, it was relaxing, calm and I got to sit about all day not having to worry about rushing to one place or another and just doing my own thing.
I had a bit of a “magical” moment on Christmas evening, when looking out the window over Belfast there was a lovely twinkle of all the street lights almost as if they were going off completely and back on again. I can only assume this was because there were more people sitting in the house with all the lights on, watching tv and draining more electricity than normal. It was nice though.
Boxing day was spent watching football all-day and nothing much else has happened this week been pretty quiet, I got moved into a bay. Just next door from where I was, I hadn’t realized that it was a bay and just another side room which tells you how small it is. There are three people in it, two on one side and me on the other and the bathroom is beside me but I have a lot more room than the other two, in a cove out of the way and it is quite nice.
They snore though and their machines beep a lot but it doesn’t make too much of a difference to me, I’m barely sleeping, maybe 4hrs at night if I’m lucky then possibly a nap during the day but not always, it’s ample though.
I put on just shy of 4kg this week, was hoping for 5 which was obviously a bit of a stretch, pleased with it all the same and getting close to my personal target. I can actually feel a bit of muscle coming back on to my legs with the exercises I’ve been doing too. All is going pretty well on that front.
And so, the day before it all starts properly, I’ve been avoiding watching films and tv as tomorrow I’ll be a bit groggy and drowsy with having the peritin, it will be hard to concentrate on things like reading and probably won’t be able to get for a walk as they are trying to get it started earlier this week with the chemo, both, and probably won't attempt one after. It’s been quite late the last few times, would be nice to just get it done and dusted earlier then we'll see how thing are going to pan out.
Tonight has been a night for enjoying the moment I am in and listening to music. I’ve been savoring exactly where I am, what will be happening and what all I’ve been through and it makes me happy,
I may have the ‘if something can go wrong I’ll find another way that’s completely unexpectedly worse’, but I also have the ‘if something can go right I’ll find a way that’s completely unexpectedly better’. Keeps things exciting, you couldn’t make half of it up and I wouldn’t change a thing.
I don’t know anybody who’s been slapped in the face by the tail of a falcon in the middle of a forest in NI, nor many idiots that have slid down the steep side of Slemish, just remembering a cow took a disliking to me that day too at the entrance and had to climb over fences to get out. Also, the time I went for a walk along the Ulsterway towards the Giants Causeway followed by a herd of sheep and the fireball, whoosh!!! The African music video, chasing the tractor around Castlewellan, the otters and the flying fish lol oh oh and the fox watching me fly the kite.
Right
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Anyway
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Enjoy your Monday morning.
Wednesday, 25 December 2019
A not very Christmasy Christmas Day post.
On Friday as was said on the previous blog the steroids were reduced and I was unsure about whether this was a good idea or not but it was a good opportunity to get off them straight away again rather than weaning off them over time like has been the case previously. This ended up being a massive factor over the weekend. Generally, Friday went ok, I went for a walk at about 7.30 and came back just in time for the porter to arrive and take me to X-ray. I noticed at some point around then that my shoulder was a bit sore, felt like referred pain, I was putting it down to doing the walk and that it would settle soon.
It didn’t, in fact, it just gradually got worse and by about 1am it was sore rather than irritating, I told the nurse and she informed the doctor about this, the heart rate had gradually been increasing as the day was going on which I didn’t take too much notice of at the time. The doctor came and I told him about what was wrong with the sore shoulder and starting to move into the neck a bit also, but that it was awful but was still gradually getting worse at this stage I already knew exactly what it was and what to do about it. It was spoken about earlier that if anything was to happen that I would increase on the steroids again, this was obviously not relayed on to the night staff but then their hands are tied to an extent. He completed a heart trace to make sure everything was fine with that and told him what was said earlier about the steroids, the last time cleared it up the pericarditis within a couple of hours and also that the only pain killer that gave any significant relief was oxynorm. He said he wasn’t going to increase the steroids which was fine and he would get me some pain relief too but not going to the extent of oxynorm.
Saturday the pain in the shoulder gradually increased even further, the consultant and ward doctor that was on that day spoke with cardiology, they started me on another drug which is supposed to help and was given some pain relief also. They have booked for an out of hours echo scan to see what is happening with the heart to check if there is any more fluid build-up that may be causing it or just inflammation, this is supposed to be tomorrow morning. Again it was said if this doesn’t help we’ll increase the steroids… neither did. The pain relief I was on before has been halved due to my loss in weight and it has never done anything when I was on 10mg so I doubted it would do anything at 5mg.
By 8pm the shoulder, neck and now chest too was unbearable, I told the nurse and was told that the tablets and pain relief would be coming around in about an hour, I waited. Of course, by 9.30 when it did come it didn’t do much and by this stage I was unable to move my left arm much, shoulder felt like it had a knife in it and my heart being squeezed in someone’s hand and getting tighter.
Again the doctor, the same as the previous night came and repeated the trace again from last night and again I repeated about the steroids and oxynorm. Eventually, after the pain gradually getting worse and worse, it had been unbearable by 8pm so you can imagine how it felt by 2am, I was really struggling with it even well before 2am, something had to be done and finally a dose of oxynorm, it didn’t ease it completely but it made it a hell of a lot more bearable and the best part was it made me incredibly drowsy and I was able to fall asleep.
The next morning when I got up the pain was still there, a dampened pain but there all the same. The ward doctor came about 1030 who was in the previous day also so knew what was going on, she went to see the cardiologist again to see exactly what would be the best thing to be done.
On her return, maybe it was a mix up of words or what but the echo was canceled until the next day which I had assumed was the main reason why they were keeping me off the steroids so they could see the inflammation. The cardiologist had said that there was no point going back on the steroids as it would have no effect and that the new drug might help but will take 2-3 days to have any effect… I was in disbelief the steroids had obviously worked the last time so how they have no effect I’m lost. Also the unwillingness to give me ample pain relief didn’t bode well for me that day.
So basically I’m currently left here with no steroids and pain relief that doesn’t relieve with the pain gradually increasing again already in the morning.
At 1 the main consultant came round with the ward doctor and by this stage the pain had already built up not to the really bad extent from the previous night but it was starting to edge that way much earlier. I made it incredibly clear that I was not willing to go through what I had the previous night and they decided to put me back on the steroids. I intentionally didn’t take any pain relief after this simply to prove to myself that the steroids do have an effect and do help. And sure enough, 2 hours later it was clearing up and by the evening was gone completely.
The following day, Monday, the ward doctor came round and there was a possibility that the chemo may be delayed, they want to get the results back from the echo before making any decisions. I obviously went for the echo and had an inkling that something wasn’t quite right. She finished then went back and took a couple of extra scans.
My main consultant came around later about 5ish, by this stage I knew I wouldn’t be getting the chemo today, she was impressed with the x-ray on Friday about how clear it looked compared to the previous one, I had been complaining about my lungs being sore on the right, but this is most likely just from the surgery and it healing up but she wanted to get an x-ray all the same. The weekend obviously didn’t go to plan but we decided that the next time we’re reducing the steroids we’ll go much slower. We talked about the pericarditis, the scan showed there was about 1.5cm of fluid build-up but that it wasn’t having an effect on how the heart was working and there could be a chance that I may have to use the steroids as a maintenance dose to keep this at bay which I found a bit amusing as only a month ago I was finally after 23 years or able to come off them and now on them again for another thing, which makes me think that maybe the pericarditis has been there for a long time but was never picked up as I was already on the steroids.
Then we spoke about the chemo, she gave me two options; option one was to go ahead with the chemo tomorrow, this would mean it would be 2 weeks until the next dose of bendamustine. Option 2 was to just skip the chemo this week and jump into cycle 2 next week where I would start the full doses earlier than the other option. I chose option 2 and she thought that was the better option also as I was coping with them so well, so New Year’s Eve and the day before will be bendamustine days and then the two Mondays after will be obinutuzumab.
Next thing that was mentioned was Christmas, she asked if it was ok if I was to stay in, I didn’t mind his one bit, I’ll have a Christmas like Christmas should be sitting about in my PJs doing very little.
Tuesday was Christmas Eve, and all very quiet, I finally got my hair cut it was probably as long as it has been for maybe 10 years and desperately needed cut the last 3 months or even longer, that was about the only thing that really happened. Ordered my Christmas dinner which I’m looking forward to.
Now it is Christmas Day and pretty much will be a nice quiet day with a lot of doing little, Christmas dinner was lovely. They gave me some Christmas crackers too so I’m currently sitting here with my paper hat on to keep my head warm a bit, always feel every breeze there is for a couple of days after getting it shaved.
Q: How does Good King Wenceslas like his pizzas?
A: One that’s deep pan, crisp and even.
Can anyone explain this one, it’s over my head no idea who Wenceslas is?
Merry Christmas everyone!!!
Friday, 20 December 2019
The 2nd chemo
So Monday started with writing the previous blog, I had been thinking of different ways to further secure the data on the project I was working on as it’s all personal data, grand if it’s my own but if I was to set it up for anyone else there would be issues. So I’ve made it pretty secure, can’t access the page directly and basically need a login to see the details, I’m pleased with it and will certainly do the job for me.
That killed most of the morning for me, after that I was looking into some hobbies I could do with suggestions from others, as I’ve been listening to audiobooks I was looking through a few of them and realized at the moment I’m just listening and not really doing much else when I do and so I got a few ebooks to read, not that I didn’t already have a bucket load of ones I’d already got on offer. It’s been a long time since I’ve properly got into books but there’s nothing better than getting a book and not being able to put it down, and so this appears to be my main hobby now, book suggestions are welcome, anything at all really.
I went for a bit of a walk, I was getting the premeds for the chemo at 3 and didn’t think I would be in much of a form to be able to do much the next couple of days with getting it. This is the second chemo I’ll be getting, obinutuzumab. The first day is a trial run, I’m only getting 100mg rather than the full 1000mg, the 900mg will be given tomorrow. All went well with the infusion although it took 5 hours to complete so it was fairly late getting it off, but not that it really interferes with much it just makes things awkward. The whole thing went ok though, had no reactions and it just went in really.
The following day I was fine, felt nothing from the chemo, the steroids which I’m on 60mg and it’s part of a premed too, were having a bit of an effect on me, just being a bit more hungry than normal, but I didn’t mind that. I wasn’t expecting to sleep the night before due to them as well but I went to sleep about 12 and wasn’t till 6 I woke up which is pretty normal for in here.
The docs were happy enough with everything and so it was a go-ahead for the rest of the chemo on Tuesday evening, the day was spent reading and went for a bit of a walk as I was feeling ok. My temp all day was sitting around 36.5, which is has been since I got the heart stuff all sorted and was checked again at 3 for the premeds, of course in typical Alan fashion at 4 when I was due to start the chemo the temp shot up to 38.5 and they had to delay, I seem to like complicating things. They took blood cultures and started me on antibiotics again, this is their procedure, they were told to check the temp an hour later and if it was settled again that we could try again to start the chemo otherwise we’d have to postpone till the following day which I wasn’t overly keen on.
It was strange I thought the room was just getting warm, as it normally does about that time and didn’t think it was me, thankfully at 5.30 the temp was back down to 36.5, I joked with the nurse that she just read it wrong but she did check a couple of times to be sure. And so the chemo was started, it was increased in speed every 30 mins. If it was kept at the speed yesterday it would have taken 45 hours. I think it was about 11 that it was finally finished, I didn’t take any reactions to the chemo itself and all seemed to go smoothly.
I guess in a way if I was to have a temp it was a good time to have one, before the chemo starts rather than during which may have delayed it longer and at least we know it wasn’t the chemo that done it. Soon after finishing the chemo through the nurse came back and put on fluids which would run for 9 hours or something so would be off for lunch the next day.
Again on Wednesday, I was feeling grand had no side effects and was feeling ok. I went for a walk around the hospital and killed time. I was expecting to be wrecked and having to watch tv all day so it was nice that that wasn’t the case and I was able to do something. Today the steroids had quite an effect though I was hungry constantly and just kept eating and eating and eating, I was impossible to fill.
Thursday was something similar to Wednesday, nothing much really happened, which I suppose is a good thing, I kept myself busy and had a nap in the afternoon as I didn’t sleep much the night before, it was a mixture of the steroids and listening to music, I rarely ever fall asleep listening to music and the combination with steroids certainly didn’t help but not like I was busy doing anything the next day.
And so now to today, don’t really plan on doing much, maybe a walk, tv, some football later. They have stopped the steroids which I was unsure about at first but then why spend weeks weening off again when I’ve only been on them a couple of weeks and maybe best just getting off them asap so I was happy to go ahead with this.
I did come to the realization that I probably won’t be home for Christmas, with starting the antibiotics they are normally a 10 or 12-day course and so with starting them on Monday it wouldn’t be till boxing day until they were finished. But in all honesty, I don’t mind this, everyone is unwell and I am not taking any chances, plus I’ll be too tired to be doing much. I’ve been sitting about for 3 months and I’m certainly not going to just get out and be able to go here and there, I’m not doing it, I’m taking it easy and relaxing and not putting myself under any pressure, I also don’t want to get sick this early on, everything is bad enough without adding in getting an infection too. So I am quite content being safe here away from everything. Saying that I am missing home home just doing my own thing when I want to, properly relaxing.
Monday, 16 December 2019
Eating and waiting
It’s been a long week of a lot of trying to kill time which is pretty tough sitting in the room and only a hospital to walk around, obviously not all the hospital but I’ve got a loop that I do a few laps of and then return to the ward to sit about some more.
I’m certainly nowhere near as fit I was, I have been sitting around for the last 3 months and with the odd walk and have lost 20Kg, just under half my current body weight so I have a lot of putting on weight to do. I’m so skinny and boney, I’m looking forward to putting it all back on again, be it by eating or exercise, most likely a mixture of both to be fair, things hurt more than what they did than when I had a cushion to sit on or lean back on, I’ve had issues with my butt and had to shift the way I sit as I was just sitting on bone which after a while got more and more painful, my back especially shoulder blades are more sensitive and almost feel like I have something digging into me all the time. The sitting around so much I’d say is the key actor in this as I’m either in bed or sitting on the lounger with maybe an hour maximum walking around. But I don’t really have too much of a choice at the moment.
Last weeks chemo went without any glitches, they were half doses but I had no reactions and didn’t feel as if I had anything, it reminded me of the last time when I was getting the R-CVP where I was on this for the 3 cycles and it did nothing, I felt if it wasn’t doing much to me it won’t be doing much to the cancer either, but that’s just what it reminded me of, no facts or anything like that. The consultant had said about getting a scan after the first cycle to see if there were any changes in the nodes to see if it had done much. I was surprised as I didn’t think there would be much of a difference so soon but would give us an indicator of whether things are going the right way or not. I also mentioned about the last time and “wasting” 3 cycles for nothing so she was happy to push on with the 2nd drug to test it which will be started to and said about reducing the time of the first cycle as the doses where lower, I feel the ball is gathering momentum rather than being at a bit of a standstill that it has been since the chemo last Tuesday and before.
Generally, I am feeling so much better after getting the heart issues sorted, no pain around the heart and chest, it all just feels so much better, funny that something can be there and you have no idea but it’s making such a difference. The steroids have also made a big difference, not all in a good way but not exactly a bad way either, I am certainly eating more not that that would be tricky as I was barely eating before, basically, anything that is thrown at me is being eaten, that is of course if there is room which I’ve been running out of as I am so full and I’m starting to suffer from constipation. I have now taken stuff to help with it as it was making my heart rate higher and starting to feel quite uncomfortable. After a few days of gorbing I got my weight measured and I had ended up still having lost some which I was surprised by, I thought I would have put on a couple of Kg, but obviously I’m losing muscle and putting on fat cause I’m so buff and all that and muscle is heavier...
This may be partially true as I’ve noticed that I am a lot weaker, it’s much harder getting up from the chair I can really notice how much more difficult it is each time, at least with the higher steroids and pain relief my actual knee bones aren’t playing up as much but once they stop I may have more issues and really struggle, something to look forward to. I’m also not sleeping as great the last few nights, more of a struggle to get to sleep but once I am I’m ok and not napping during the day, although a few times i should have as I’ve ended up being grumpy while visitors are here and drifting off a bit.
I’ve been trying to think of little projects/hobbies to do, my first idea was to do a bit of programming and was thinking of making a few changes to my website but on my Chromebook it will not display PHP as a webpage (which I’ve created mine in) and just shows the coding which just makes things tricky, I’m sure there is a program/addon/app I can use to activate the pages correctly and I couldn’t be bothered uploading the page to the test server each time I want to view it in action, but when I’m just tinkering it would just be annoying, I did manage to tidy up files on the server that are no longer needed to save up a bit of space.
My next hobby was some retail therapy, just getting silly things that will come in handy in and out of the hospital, then I stumbled across something that I could make a proper project of. When I was younger I had a medical talisman that gave details of my illness and emergency contacts, but it was all on a little bit of paper and squeezed in. So I thought, well why not make a webpage that gives these details and more. I began to create the text for the page giving details about myself, medication, diagnosis, drugs, picture, and medical history, all with links just to clarify which drugs they are and disorders/lymphoma, all very detailed if required.
The next part was, how will the emergency services know to go to this page if something were to happen? Well, NFC tags so I was looking for something that had an NFC tag in it that also has the Medical Information symbol on it so they know what to do. What initially gave me the idea was a ring with NFC built-in, not that I wear jewelry or anything like that but I thought it would be a decent idea, but how do they know to look there if I can’t tell them, I started looking for bracelets or anything else that had NFC in it but the same issue. I was able to find one thing but it was a company that already had the same idea but rather than hosting your own information they hosted and set it up, which I wasn’t overly keen on as you were charged for it and couldn’t alter it to link to my own page, looking and looking and more looking and nothing.
So what I ended up doing was getting a medical information necklace which I will get engraved with quick info and to use NFC on the other tag connected which will link to the webpage for more in-depth information on everything which I can alter at any time, even on my phone. Not exactly what I was hoping for but fairly close and killed time. It may be worthwhile looking into this a little more as I feel it is a good idea.
I was able to get all the information set up and the looking for products done fairly quickly but then I had a proper check at the layout of the page on different devices, worked fine on a laptop, desktop and tablets (mostly) but when looking on a mobile for some reason the main important text was a lot smaller and harder to read. This would obviously be the type of device that emergency staff would be using to look at the information, they’re hardly be carrying around a laptop in their ambulance, so it would be pretty important to get this working correctly on a phone. To be honest, I have no idea why this specific part of text was different from the rest as it was all set up the exact same as the other parts, but then that’s coding for you, I spent more time tinkering making this work correctly and making the page responsive to different devices any tidying up the coding and pages than anything else but it works and it looks half decent. I’ve ordered the necklace and NFC tags, and today the I should get the NFC tags which I can link to the webpage and the necklace should be arriving soon too.
But like with all technological things there are gremlins, last night the broadband went down in the house and so the webserver is currently down, so I need the server rebooted which can only be done at home, not that this is a massive deal to get done nor an emergency but it’s just inconvenient and at the time when it would be quite convenient to not have happened, it also highlights that in an emergency and this happens… what then? It doesn’t happen often and quick to solve, I hope, I’m quite sure I set up a static IP for it. Anyway, I’ll get to that if I need to.
I’ve lost where I was and what I was mainly talking about as the doctor and nurse came in after… hobbies? Killing time? I think, well I’ll continue that way. Once I had completed the page it was… what next? I’ve been listening to audiobooks for a while and have continued in here but then I’ve wanted to get back into reading more for some time as I haven’t properly for years and I’ve been building up ebooks for a while, mostly ones that have been on offer or free and so I have a heap to get through and so I guess this is my current hobby but I’m still looking at a screen all day, everything I do is through a screen. I do have a look out the window every now and again and there’s a lot to see but you can only do that for so long.
I feel it’s more the physical aspect of things I need, walking around, moving, I actually really miss cycling, not that I was an avid cyclist before but I went in and out of work on the bike a bit and the odd cycle, it would be nice to just feel the wind in my face and see things moving, everything is stationary for me, nothing moves, the only thing that moves is the clouds outside the window and they’re really slow even on a day the wind is strong.
But back to things, I’m all good, feeling good, maybe a bit restless and could do with something to keep me busy, Ideas for silly websites would be great that always keeps me out of trouble, Or something and if it tickles my fancy I might try it.
Good news just now the dietitian came in and was incredibly pleased I was eating so much more, she didn't mind the snacks but said there was more nutritional foods on the ward than skittles, best part of all weight has start to go up now I'm 45Kg and we talked about my mobility and that I'd been doing some walking and I quote "You're very motivated".
Thanks for taking the time to read this. Tuesday, 10 December 2019
Time
It’s all coming to a head and the beginning of the real stuff is now on its way. I’ve had a lovely few days since Saturday’s panic with the pericarditis, I was given pain relief and started on steroids which relieved the inflammation and would have been the first two days of treatment which I've been very much all for some being diagnosed.
But now it is here I’m more hesitant, things may have been bad over the last three months but things could get worse a lot sooner, it’s not like me to look more on the negative side, I’m just worried not about me I'm always fine, but my family and friends and how they will be.
I’m just having one of those moments which are hard to avoid in these types of circumstances, but putting it down into words helps me, even if it is scrappy and no one reads it it’s off my chest to help me.
Currently laying in bed looking out the window towards home which I miss and everyone there, I’ll get back there soon even for a while before back here again for more action and ass-kicking.
2019 never had an Autumn for me and I’ve missed it too, going to Castlewellan to my spot overlooking the all the incredible colours of the trees and the Shimna River in tollymore with the leaves lying on the rocks and the sun breaking through the trees and making them shine of gold, going to Portrush with the crisp air walking the beach in the wind and town finishing with a chippy chip, and climbing up the mountains into the clouds where you just disappear from the world and all the woes in.
Something to look forward to and build my strength back up for next year, before then though we will have Spring where the life all come back into the country and the bluebells coat the forest floors and a week of summer sometime between April and September surrounded by good old walking in the rain.
Anyway went off on one, this helped.
Thanks for reading.
Saturday, 7 December 2019
phase 3
And so to the results of the biopsy it took me by surprise and I wasn't confident that it was the correct result but it came back as lymphoma after 2 months of all the testing that was done checking for everything under the sun and being told initially that it wasn't lymphoma, very frustrating.
Although over the time building up to this I had been told that it could come back as lymphoma but not actually be lymphoma it could be remnants of the last time I had it so I was sceptical.
I was moved back over to the city hospital as they would be able to treat me. Of course more frustration when there and getting my BP checked.. Your bp's low and your heart rate high... Doctor called, oh hi Alan, that's normal isn't it, yeah, that's grand.
And the same again later at change over with another nurse. I know they're doing what they are meant to do but it's just bloomin frustrating.
The doctor in charge I know well I have known her for I would say definitely at least 10 years. And was part of the team for my last lymphoma. She came to explain every option they were currently looking down be that a clinical trial, getting funding for specific drugs that may be best suited to the the situation, or using what is already on offer.
After a few days and speaking with specialists she came back to say what the plan will be there is a drug/chemo, I believe an old one, Bendamustine which they thought would be best for my specific condition, but it isn't supplied on the NHS and they will need to request funding for it but they didn't seem too concerned about this at all.
Everything seemed to be going fine I was able to go walking and not get short of breath, my chest was getting nice and clear and I was feeling pretty OK.
But then Saturday night after watching a film in the chair I got up and lay in bed to go to sleep then agony in my left lung nothing I could do would settle it, I asked for pain killers and didn't seem to settle it at all. I think I got some sleep and the next morning it was still sore. I said to the guy that was doing my BP would he get the nurse an hour later still nothing he came back to do the BP and my temperature was down a bit heart rate higher into the 130. "your temperature has went down which is the main thing" and asked for a nurse for the pain. Heard him say "he's a little bit of pain in his chest".
When the nurse came in I told hers it's not just a little bit of pain this is very sore. Ended up getting an ecg to make sure the heart was OK, the pain continued through the day with the pain meds getting stronger and stronger and finally I got one that actually eased the pain. I ended up getting an xray and ct scan as they were looking for clots but came back clear and the excruciating pain continued.
The following day Monday a consultant had a look at the ct scan again and thought there may be fluid around the heart and within half an hour they were at me with the echo machine, they went off for a short while and then were prepping me for theatre, there was a load of water around my heart which was putting tension on it making the heart rate rise and the pain. So well within 2 hours of the ct 2nd result I was in theater getting the fluid removed.
In theatre they got about 370ml out and in the drain the following days they got another 200ml. It was quite scary someone with a 6inch needle going into your chest avoiding your liver and lung, piercing a sack around your heart that's going about 130bpm. But all went well thankfully.
Drain was removed and had another echo where they saw there was still fluid around the heart but not an emergency case and wee happy to send me to the haematology ward from cardiology. Friday I had an echo again and there was no increase in fluid, they were potentially going to drain that too but would delay starting the chemo which had already happened with the first procedure.
So the plan is to get a picc line in on Monday and start treatment on Tuesday.
Although this morning I had the heart pain again but certainly not to the same extent, surgeon came to do an echo and was more than happy with the results there was very little fluid so could just be the inflammation around. He suggested I just stick to the pain relief for now.
Haematology doctorcame back and I said I was starting to get sore again and he suggested about going on to steroids, I asked as the first 2 days of treatment are steroids could this potentially mean I could start the chemo earlier and he said it's a possibility so that would be nice, now have my first dose in me, I'll be running round the place later haha.Saturday, 7 December 2019
phase 2
Phase 2 is the operation, I arrived in to the royal and all was well got my bay slept fairly well and next morning I went in to surgery, next thing I remember properly I was back in my room, all seemed to go pretty well no issues and wasn't in any pain but I was probably still all doped up.
Come 6pm this ass changed chest started to get quite sore and was just getting gradually worse and worse during the night and next day, they kept increasing the strength of the pain killers I was getting but it only ever took the edge of it off.
The surgeon came in and was chatting about the procedure and said he was going for one lesion but wasn't overly keep on it so changed his mind to go for another so had to make a slightly larger incision for which was grand as long as he got a better sample.
He also remarked about the pain that I was in agony as each time I coughed the heart rate jumped up further than "normal" it was almost delayed as my heart rate was sitting about 130 in the preassesment but the biopsy needed done. And so he wanted stronger pain relief for me and explained that the anesthetic block mustn't have worked and no wonder I'm in pain.
Next thing to go wrong as there always is for me is when I woke up was having a fever and heart rate was high so, (this is all fairly normal for me in the mornings and has been for a few months) there was a mad panic and they ran a load of tests and moved me into a ward so they could keep a better eye on me.
While in the ward this continued and with the fevers I was getting very delusional but thankfully paracetamol settles them. One morning I had a complete coughing fit and couldn't stop this done something to me and the pain I thought I was in before just seemed like an itch in comparison, it was constant all day but finally settling.
After a few days I was moved back to my own bay, fevers continued, coughing also but they had now come to realise this was all normal for me.
One final major thing happened here, I had my operation on my right lung but one morning I woke up and I was in pain with my left lung and getting referred pain in my shoulders and throat, nothing eased it at all no matter what I took but then going to bed that night I managed to get to sleep and the next day I was fine, I couldn't understand it but I wasn't complaining it was away.
And so the conclusion to the phase 2, phase 3 the biopsy result....
Saturday, 7 December 2019
phase 1
25th September - 13th November Ive been meaning to white the next few posts for a while but never bothered to get round to it, but as the potentially main stretch is finally close by I thought I would catch everyone up on things. I'll keep them short and brief cause.
As you know on the 25th I was admitted in to hospital as I had started coughing up blood and was generally feeling crap, they have ruled out lymphoma as there were no more swollen nodes and the nodes in my chest seemed more like cavities and lesions rather than swollen nodes and so they started testing for infections.
Initially I was in isolation on antibiotics while they tested for more serious things like tb and all came back clear and was downgraded so everyone didn't have to dress up like they were going to space.
I was have fevers and they took blood cultures numerous times, similarly to sputum samples, basically this for 2 weeks. One, only one result came back with a positive result for anything and it had a fungal spore in it and we're unable to culture anything from it.
At this point they stopped giving me the antibiotic and started me on antifungal infusions, and started to reduce my steroids to get me off them fast as this could contribute to it being worse, although they had an idea that the spore may have came from the antibiotic as that's how it is created.
The same again after, no positive results for anything including from a pin biopsy I got on one of the lesions in my lung. They were running out of ideas of what to do. They'd ran all the tests they could, checking my heart for heart disease also.
There was nothing more they could do for me in hospital at this time so they allowed me to go home until the next step which I was a sceptical about and I certainly wouldn't be able to go to my own home alone so went to my parents to stay which is what I was sceptical about because I knew how bad the fevers and coughing fits could be and I was scared that they would not be able to manage, a couple of times they ended up being close to bringing me to a+e, but never did.
During my time at home was lovely being able to spend time at home and I was feeling a lot better if still not great and even eating a lot better also.
We got results back from the toxicity level of the antifungal tablets it was too high and I had to stop them, then the next check one of my liver functions was off so couldn't go back on to them again, although I felt better off them.
Next step was to get a wedge biopsy of one of the lesions in my lung, taking a much larger sample so they can get much better results of what this could be. It was played down that it was just a pinhole procedure and when initially seeing the surgeon he said it would only be at the largest the size of his finger.
Later when going to the preassesment we were told a different story that there would be drain pipe hole and there would also be the incision itself which would be at least 4 inches, if they needed to dig in a bit more it would be about 6 inches and it may even be right down my side it things go to pot.
I was generally a quite worried about it, not the bigger incisions but just an incision as with all the coughing I would do would be agony on the mark.
Anyway home time over phase 2...