My drugs were delivered to the office a little after lunch this afternoon. I'd missed the call to my mobile, so received a call from one of the nice ladies on reception and quickly hurried round to pick up my stash.
I had absolutely no idea what to expect, but what I got was a pretty large blue box and a bright yellow sharps bin. The lady on reception - who I've known for years - was really curious and asked what it was. When I told her it was drugs and that I was going to have to start injecting myself, she asked what for. So I told her. She expressed sympathy, and then asked if I was going to be taking deliveries like this daily or weekly. Monthly, I said. Quick as a flash, she offered to make sure it all got received all right every month and that if I wasn't around to pick it up, she'd make sure it was locked up in reception rather than disappear into the mail system. I was quite touched, actually. It turns out that this lady was off work a few years ago with a brain hemorrhage, has some titanium bands inside her skull, and was extremely empathetic to my needs. She asked about who my neurologist was and how often I saw them, and then we had the following conversation:
"Of course, you know what's really good... as well as that stuff?" She nodded at my big blue box.
I raised an eyebrow quizzically, knowing where this was going but wondering if she was really going to say it in the reception of the Head Office of a big blue chip company.
There we go, she said it. Well, it's been proven to work, right? Perhaps not in the reception of the business though, right?
[yes, I have edited this bit....]
Well, I certainly never expected to be offered cannabis under those circumstances - for medicinal use or otherwise. But isn't she great? I've always made a point of saying hello to her by name as I walk through reception every morning, but I must admit that's not quite the kind of return I was expecting, anyway.
So what's in the box?
And it is a very big box.
Slightly disappointingly, once you get through all of the packaging and the ice packs (which actually aren't required for this stuff), then all it contains is four individual packs like this one.
That's four doses - one month's supply - of bioset Avonex (in powder form, in the vial on the top right), a syringe filled with a solution (bottom, to be mixed with the powder and then loaded back up into the syringe ready for injecting) and a big bloody needle (top left).
Well, perhaps not massive, but still plenty big enough.
I've now got an appointment with the MS Nurses for 9am on Tuesday morning, at which point I will be taught how to mix the drug up properly and will then give myself my very first injection. I won't be using the gadget that shoots the needle into the muscle, either... I'll be doing it all by hand.
This suddenly all feels very, very real.
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4 days ago
I remember how terrified I was when I had to learn to self-inject insulin for gestational diabetes. However, although I had to do this in carefully timed intervals four times a day, I was injecting into fat layers in my thighs and stomach, not into a muscle. And I got to stop once the baby had been born.ReplyDelete
I hope you get the full benefits of this. I've heard about cannabis for MS. I think in addition to a British study, there was a Canadian study (in southern Alberta where MS is particularly prevalent; three of the four people I know with MS come from there) which vaguely said that about a third of those who toked up got some relief.
They're running a cannabinoid trial a my hospital, actually. The medicinal form is called sativex and I believe that it comes as a spray to use under your Tongue, rather than as something to be toked. Still, apparently very good for relieving the muscular pain and spasticity that sometimes comes with MS, although thankfully not with mine yet.ReplyDelete
It is daft that a possible form of relief like this has to be sought mainly from illegal sources, even by respectable ladies like this one.
It's also a bit daft that the needle shooting device (that I was trained to use) isn't going to be an option because it costs about £200. It's not a problem, although I'm confused as to why they trained me to use it, but it's funny that they've handed me £1000 of drugs for one month and are drawing the budget line there.... But what would I know?
That looks... uncomfortable. I love the receptionist, though! *G*ReplyDelete
Mindbending stuff, of course, but it'll be fine when you get used to it. I would bet my prizewinning orchids on that. OK, they haven't won prizes. They're nice though.ReplyDelete
What stood out most was that they're not giving you the autoinjector after all. Possibly you could opt to buy it yourself if it'd make a substantial difference to your quality of life. Better still, perhaps you should stir up a storm, including calls to local papers and so forth, causing your primary care trust to decide it's more trouble than it's worth to deny this basic equipment to articulate, argumentative MS patients and instead use their discretion in this case.
Did they include that 50p for scale? Are you doing ok?glReplyDelete
I really admire your stoic approach, and hope that you get the benefits of it. The very idea of those needles makes me shiver.ReplyDelete
Dear god that is some really serious kit!ReplyDelete
Really hope all goes well with the nurses and that the benefits of the drugs outweigh the daunting task of injecting yourself.
Now strangely enough, I thought f a nice spliff when you started off "My drugs were delivered to the office..."ReplyDelete
Can't think why.
Yes, harrass the NHS for the autoinjection thingie - there must be loads of people who need to inject themselves with drugs in your area, including people with MS diabetes etc. Putting a bit of pressure on the local NHS, especally if you know others in the same situation in the area who would do the same, is worth doing I reckon.
Good luck with your first jab! (You'll be fiiiine
Given that I am terrified of needles I can't tell you how very brave I think you are right now. Well, I think you're brave anyway. (pulls foot out of mouth)ReplyDelete
Its just a matter of time before this will all be old hat to you, I promise.
Its nice to see that being kind to someone pays off every now and again isn't it? How sweet of the receptionist to help you out. And how funny for her to offer to get you...anything you might need. I think sometimes it s suprising to find out just how many people live with conditions that require personal medical maintenance. But most of the time we don't even notice, do we?