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".