Hello, welcome to my next podcast. On the show today, I'm going to stay along the old
school line that I went on the last one. No scripts, nothing like that. I'm just going
to be talking about my treatment that I had on Friday and just generally chatting about
me, what I've been up to and yeah, just sort of giving you all a bit of an insight as to
what I've been up to recently. Well, we will start with the most obvious. Finally, finally,
I've started on my treatment. I've started on ocrevis. I was given my first half a bag.
That was Friday. I got to the hospital before eight in the morning. I had my preliminary
checks done, signed my consent and whatever else. Apparently, I've been consented as primary
progressive. Yep. Okay, I'll take that. You know, at least we've got an idea of what's
what. So that's where we are with that. The consent was signed, all the preliminary checks
done and we went on. I've taken the antihistamine that was necessary and the steroids. Steroids
and the antihistamine. Yeah, I mean, it didn't take particularly long. The drip, I mean,
I've been sort of having IVs and whatever in is something I've never really had much
of. You know, when I went into hospital from work just before Christmas, not last year,
the year before, that was the first time I'd ever had one. So this one I actually had in
the back of my left hand. Very, very strange. So every time I've ever had these previous
and again, it's only been one, two times, it's always been in a sort of mid part of
my arm. So having it in the back of my hand, it actually hurt a bit, the needle going in,
I'm going to be honest, there was a little bit of pain. It wasn't comfortable, but actually
once I got used to it, it made a lot of sense. As the infusion nurse said, it meant I'd be
able to use that arm because having the needle sort of in the middle part of your arm kind
of restricts your movement a little bit. And yeah, I understand that. I've got to say,
one of the things that the infusion nurse did was absolutely mind blowing. It could
just be me being very inexperienced with this sort of stuff. But it was a bit chilly out
in the morning and obviously it meant that the veins in my hand were a little bit hidden.
So she got a medical glove, filled it with warm water, put it under my left hand, got
another medical glove, filled it with warm water, put it on top of my left hand, asked
me to just gently hold that there with my right hand, a couple of minutes. It actually
brought the veins out to play, so to speak. It was brilliant, honestly, something so simple
and it worked an absolute charm. To say it was incredibly impressive is an understatement.
But yeah, say so, we put the drip in, went through the preliminaries, that got done.
And I like the fact there was no ceremony when it came to actually putting the ocrevas
onto the drip. Obviously they changed the line and yeah, the ocrevas went on and I actually
sort of had to ask, I said, oh, is this the big boy going on now? And they said, yeah,
yeah, this is what it is. Okay, fair enough. Don't get me wrong, I wasn't expecting anything
major, but you know, I don't know, maybe it's just me being a little bit unsure on
all of this. But yeah, I was just maybe expecting them to say, right, okay, we're just doing
this now or whatever else. But actually it was brilliant the way they handled it. Absolutely
brilliant. Yeah, I mean, once the ocrevas was going, probably just after the first hour,
I started getting a bit of a reaction, nothing major, nothing serious, getting a bit sort
of itchy around the back of my head. And the infusion nurse, she had a look, it was going
a little bit red, but nothing serious, nothing serious at all, nothing to worry about. And
it sort of just the itching went away and it worked its way around the top of my head
and hairline and a tiny little bit on my chest, just a tiny little bit. So they just didn't
up the speed of the drip at all for about an hour and a half, just to give my body a
chance to get used to what was going on. And again, it worked a charm that that went away
after an hour and a half. Yeah, the reactions sort of subsided as if my body was getting
used to it. And it was, it was actually quite, quite surprising. Because again, you know,
I've said it once, I'll say it again, this is all so new, that I didn't know what to
expect. And to sort of have that that reaction and have it so calmly dealt with. And again,
I mean, it is such a minimal reaction, it was nothing major, it was genuinely nothing
major. But everything was so calm. There was no, no panicking, nothing like that, nothing
was being made to seem scary. And when it got to the point that the ocrevas was finished,
I mean, while it was going on, I did actually blog from my chair, that's on the website,
Mike's MS journey.com. So yeah, I did blog from my chair, just to sort of update everyone
as to how it was going and whatever else. But yeah, once ocrevas was done, they put
the flush through, which took another hour. And again, I mean, that's sort of the time
flew. The time genuinely flew. I mean, I'd love to sort of go through and talk in depth
about how it all was. But genuinely, it just, you know, we started all this just after eight
in the morning. And I was done by 20 past one in the afternoon, it felt like I was only
in there a couple of hours. It really did. And what I've got to say is I was scared.
Cut the days previous, I was absolutely terrified of what what was going on. I really was scared.
And even going in now, I did everything I could to try and sort of hold that back so
nobody really knew. And I know previously, I have mentioned my dislike for the way NHS
handled my case. Well, what I've got to say on this one, to the infusion nurse and my
MS nurse, you were fantastic. On Friday, you genuinely made me feel calm. From the minute
I walked into that room, it was just treated in such a calm and at times quite fun, which
sounds a bit silly. Trust me, I understand that. But you know, there was banter, which
helped massively, because it kept me calm. And that's what was needed. So yeah, on that
MS nurse infusion nurse, you were brilliant. Genuinely, genuinely brilliant helped a lot.
And while I was in there, I met a couple of other chaps that were having a different treatment.
Both of them superb, absolutely superb, have really good conversations, incredibly nice
people, again, made me feel calm. And in fact, you know, there was nothing off limits we
were talking about her MS and whatever else, but it felt like actually, you could you could
just talk openly. And there was no judgment. It was a case of actually, it's somebody
understands what you're going through somebody that understands that this isn't all the same
for everyone. Everyone is different. We all handle things differently. We all feel things
differently. We all have different symptoms. And it was just so helpful to talk to other
people that are going through it genuinely. And if you are listening, you will know who
you are. Thank you. Absolutely superb. Because again, it was just it was so calming. I think,
honestly, that's what was needed was for it to just be killed. Because again, in the days
leading up, I mean, I was terrified, I really was scared. I'd be lying if I said I wasn't.
So to have that kind of the calming influence from everyone involved, and I do mean everyone
involved, it helped a lot. But yeah, I mean, that's the treatment. That's how it went.
I've got the next one early part of March, which again, once that one's done, I've then
got six months until I get the first full bag, which I've quietly got my fingers crossed
that this is just going to start helping to keep me as I am. I'm not telling you this
isn't no miracle treatment that's going to cure my MS, nothing like that. This is purely
and simply just to try and keep me as I am. And I take that I'll take that all day, all
day every day. If it means I'm going to get any worse, I'll take it. But coming away from
the treatment side of things, I've been doing my MS Society Challenge 28. Again, I've been
doing that on my scooter, because I can't walk it. Again, I'm not going to sit here
and lie to you. I can't walk it. But actually, I've been really enjoying it. Taking a scooter
down to the parks and whatever else and just just having a little look at the river and
just seeing what's going on. And I got to say it, people have been really polite. Coming
past people and whatever else saying good morning and just hello and that sort of stuff.
I don't know whether it's because the weather's changing. I mean, it's glorious sunshine out
there. It really is lovely. For this time in February, the weather is different level.
But yeah, I mean, it's almost as if things have sort of turned around a little bit and
people have become polite and friendly. And I'll take it. I'll take it with a smile on
my face, because actually it's quite nice. Today, today's Sunday, Lisa came with me.
It was lovely. It was really, really nice just to go around the river, just the two
of us. Yeah, and just relax. I've thoroughly enjoyed it. Really did enjoy it. And I must
admit, I'm not quite so tired today. Yesterday, obviously the day after infusion, I was so
tired. I mean, I just sit and fall asleep in front of the TV. And yeah, I mean, there
was quite a few times I did doze off. Can't help that. It had to happen. And yeah, I just
accepted it because if it's got to be done, it's got to be done. But yeah, I mean, that's
the MS Challenge 28 that I've been getting done. Fully enjoying it. Just getting out
and being in the sunshine. I've taken that. There is other bits currently I've got going
on in the background, which are a lot more serious, I'll be honest. Not necessarily health
related, but I can't go into detail on those just yet. I will talk about them at some point
when the time is right. It's more work based than anything else. So again, you'll have
to bear with me that there is things going on, but I've got to keep them close to my
chest for the time being. But it will be spoken about at some point. But yeah, I mean, that's
kind of how I'm doing. I mean, in terms of myself and how things are going. Yeah, I mean,
the standard sort of pains are there that I've been having nonstop. I must admit, I've
had a few days earlier in the week where actually just moving at all was really difficult. Lots
and lots of pains just, I mean, it just wasn't good. And I was struggling. I'd be lying
if I said I wasn't. I was really struggling. But there's nothing new currently, which I
can accept. So the pains in my legs are pretty much standard. I'm so used to that. I'm real.
I can't make it any easier because it really does hurt. My lower back has been pretty awful.
I'm going to be honest, it's been very, very painful. Still get the sort of water droplet
feelings on my head from time to time. Can't really understand what they are, why they
are or anything else. But again, I'm just trying to get used to them. Because a lot
of this stuff, there's nothing that can be done. I've just got to kind of accept it and
try and figure out a way to live beside it. But yeah, I think that's pretty much all we
need to go through today. What I will say, there is a chance, I'm not going to guarantee
it, but there is a chance in the near future, I may start switching back to two podcasts
a week. I hope that works for everyone. What I will say is on my website, I now have a
link to my specialist Facebook page that I've set up. So please go over, click on that,
come and join me. On my TikTok, I've been really trying to do some fun stuff as well
as the MS related stuff. I mean, there was a face age thing I've done. It actually put
me over 40 years old. Yes, I know I'm 40 this year, you don't need to remind me. But it
doesn't matter, it actually added a couple of years extra on top of that. Maybe I need
to start using some face creams and stuff. I don't know. But yeah, that's where we are.
As I say, pop over to my website, the links are all over there. I've also got the link
tree and all that sort of stuff. But yeah, the website, Mike's MS journey.com, you can
reach everything from there. Come and join me. Let's get this moving around. Because
again, I'm doing this, I want to help everyone else by hearing what I'm going through. I'm
hoping I can start showing other people that actually, this is awful. This is terrible.
But I'm doing all I can to personally try and fight it with a smile on my face. Well,
you have a really good week and I look forward to speaking to you all again soon. Bye bye.