Tag Archive for vertebral

Victims, Tattoos and Survivors

One of our number has had a one-word tattoo done on her wrist.  It says “survivor”.

Others among us have asked if she’d mind if they copied her, such is the strength of feeling about it.

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I don’t want a tattoo.  I don’t consider myself a survivor in a strong sense of the word at all.  But I do understand those rallying – on other message boards – to remove the word “victim” that people often put after “stroke”.

Do I sound like a victim to you?  Of anything?

I’ve blogged about the power of labels before.  But other than the girls and their tattoos, and someone else pointing out very loudly that he “wasn’t a bl**dy victim, thank you very much”, I had cause to think about it all again the other day.

I was getting bloods done at the nurses surgery attached to my doctor’s surgery.  They were doling out flu jabs and, having had a stroke I’m supposed to have one.  When that flashed up on the screen the nurse looked at me kinda funny:

Weird,” she said, “This thing thinks you had a stroke.

“I did.” I said.

No, it thinks you had an actual stroke.

“Yeah, I did.”

You’re too young for a stroke.

“Yep.  Happened anyway. VAD.”

God, when?

“Two years and three weeks ago.”

Blimey.  Wait here a sec.

And off she went to the nurse in charge to find out what to do next.

We’ve a young girl here [she said this, I promise!] who’s a stroke victim.  She’s really young and she looks great.  Do you think she needs the flu jab or not?

“Well.  Stroke victims get it.  But let me check.”

Right… Besides the overuse of the word ‘victim’, check what?  And why do I get prickly every time someone uses that word in relation to me?

The Oxford English Dictionary defines a ‘victim’ as:

  • a person harmed, injured, or killed as a result of a crime, accident, or other event or action:victims of domestic violenceearthquake victims
  • a person who is tricked or duped:the victim of a hoax
  • a person who has come to feel helpless and passive in the face of misfortune or ill-treatment:I saw myself as a victim[as modifier]:a victim mentality

I suppose that whilst the first bullet point is technically factual, I tend to associate the word with the second or third bullet points.  As do, it seems, a lot of my new stroke-made friends.  And I suppose that’s one of the reasons we hate it.  

When it all first happens you are in other people’s hands.  Then you’re either helpless or having to make a conscious choice to hand over responsibility to someone else.  I was  definitely the latter; I fought to stay in charge even though it was flipping hard work until I finally had a neuro who told me exactly what was going on and that he was “taking me back to his hospital”. That was 19 hours after I got to the ED so it had taken some time for everyone, including me, to realise that it wasn’t nothing that was going on.  But after he said that I pretty much blanked out for 24 hours, probably because I knew I didn’t have to be in charge any more.  But as soon as you can – and in my case within a day or so, all heparined up, you take it back because – lovely as everyone might be – you’re in charge of you.  You might not be able to walk or even sit up, but as soon as you can talk – and luckily I could, if a little slowly for a while – you can be in charge of you.  

Does that sound like a victim to you?  No, me neither.  And it’s been 2 years people.  How long do you want to apply the label?!

Anyway, I got the jab.  We also worked out I was a little older than they thought I was, but anyone else who wants to think I’m still in my 20s may go ahead with my blessing! And I wondered if I should ask them to drop the word ‘victim’ from their stroke vocabulary.

I didn’t of course.  They were lovely and I didn’t really think it through very hard while I was there.  But there is something utterly disempowering about attaching that label.  In the same way, it feels somewhat overegging the situation to attach the word survivor in my case.

So victim is kind of insulting, if I’m honest.

Survivor definitely applies to some, but not to me.  

Most of us just get on with it.  Simple as.  No labels required.

Thanks though.

 

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a very modern anno

Tomorrow is my birthday.  It’s a whole new year.  And, perhaps, a whole new beginning.  We shall see what it brings.

One thing I have learned is that you can fight life, but it always wins in the end.  And so long as you look for the positives, you’ll usually find them, in the end.  

Nobody promised us an easy ride, or a lack of bumps, or that we would be on cloud nine every second of every day.  So we shouldn’t expect that.  Our responsibility, I might suggest, is to do the right thing for us and for as many of the people we love as possible (even if we dislike them or don’t understand them at the time) and then find the positives in the situation.  There are always positives; sometimes we just have to look a little harder or wait a little longer to find them.

My everyday friends/family have known about the dissection, the stroke and the blog since it happened. Colleagues and contacts who are on the fringes of the everyday know because they were there or they were told, though they may not know about the blog. But I’ve not ‘gone public’ in the sense that I’ve never sought to tell those who are not in my everyday.  It just didn’t seem necessary.

BBC One's 'Mistresses'

When she was here, my friend Claudia bought me a boxset of the BBC drama “Mistresses“, which I’d never seen. I finished it this morning.  In the final episode, one of the leads explains why she hadn’t told some of the others that she’d been ill.  She said something like this: “Every time I tell someone else, it’s like telling myself again“.  And that resonates.  Something happened, and we did that and then we move on.  Do we really have to keep acknowledging it over and over and over?  As it turns out, it’s not quite as over as one would have hoped, but we are almost there and, because I now understand why I didn’t tell, and because I see tomorrow as the start of a whole new year, I thought I would.  So I did… in the most modern and uncouth way:

So if you clicked that link and you are now trying to figure out what on earth you missed, well, it wasn’t that dramatic.  Honest. 😉

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A Muddy Wee Drink

Today I was told my lips are now back the right colour.  Nobody told me they were ever the wrong colour!  Apparently they were the last time my friend Robert saw me, which was for chips at Harvey Nicks in early December.   The conversation went something like this:

  • R:       You look good, well, normal, well, as –
  • Me:    -Normal as I’ve ever looked?
  • R:       Yes.  You’re a bit pale.
  • Me:    I’m always a bit pale; I prefer to call it an interesting palour, like Nicole Kidman
  • R:       Yes.  Pale.  Your lips are the right colour now though?
  • Me:    When were they the wrong colour?
  • R:       Last time I saw you they were –
  • Me:    Blue?
  • R:       No… just, wrong.

Right… clear as!  So, we went for brunch at Roast in Borough Market.  It was yum, and I had apple and beetroot juice and a tattie scone, and got lots of great advice about other stuff from my wise friend while we caught up. And then we stocked up on the Market essentials: Stichelton and mushroom pate and hot mulled apple juice in the market.

There a few nicer things than cheeses and apple juices from Borough Market.  Except that my friend doesn’t like apple juice; he thinks it smells like, um, wee.  And he doesn’t like beetroot because he thinks it tastes like mud.  Which made my drink at Roast, in his words, a Muddy Wee drink.  Nice.

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To be continued…

Before the afterstrokeparty, Kate told a friend they’d enjoy the evening because it was “such fun” seeing me drink!

It’s true: one glass of wine is enough to make me seriously tipsy, so I drink less than most.  In fact during the whole afterstrokeparty I actually only had two drinks (and a couple of diet cokes). Equally, I get sober really quickly too.  I mention this because I’ve now got an explanation that also explains my warfarin experience.  I metabolise drugs very quickly.  It explains the higher doses of warfarin, it explains getting tipsy and sober on alcohol faster.  It’s not at all uncommon either, nor anything to cause anyone any angst.

Yes, obviously I saw the consultant at Hospital Number 2 for the Cadiss trial today!  This could be a long post.  I was in there about 40 minutes.  So if you really want to read on, make a cup of tea, find a comfy spot, and then proceed.

photo stolen from clairebelles (click to link)

You may need a quick reminder about the Cadiss trial for context.  It’s a trial that compares the post-stroke-as-a-secondary-to-vertebral-dissection effectiveness of warfarin verses aspirin. I’m on warfarin.  As part of their data collection, Cadiss provides drugs without prescription charges for 3-6 months, a follow-up scan at 3 months, and a senior neurological consultant to tell you what the new scan says.  We were hoping that the 3 month scan, which I had the other Friday, would show the artery was healed and the warfarin could be stopped earlier than the 6 month regime prescribed by the NHS standard protocols.   As it turns out, there are now additional benefits for me (in my opinion) as ongoing care is moving back from Hospital Number 3 (and the nice Dr D) to Hospital Number 2 (and the more senior Dr A).

Why are we talking about ongoing stuff?  The scan showed that my artery is still occluded (blocked) and so, for now, I remain on the warfarin.  As my boss texted, “not what we wanted”.

Dr A started out by reading the notes on each scan, which was kinda cool because I could see the screen over his shoulder and spot key words.  I’d forgotten quite how many I’d had.  A CT on 11 Oct, an MRI on 12 Oct, and another CT with contrast (dye) on 13 Oct.  He was most interested in the scan from the other Friday.  It was supposed to be an MRI but due to a mix up it was actually a CT with contrast.  I don’t know what the difference is in output but it seemed to give him the info he needed.

Dr A’s taken my case back over to Hospital Number 2.  I “can still go” to Dr D’s February appointment at Hospital Number 3 (which is when I’d expected to be signed out of the NHS stroke system) but Dr A told me to tell him that “he isn’t allowed to make any decisions, I’m in charge now”.  I like Dr D of Hospital Number 3; he’s great.  But the place I felt safest and like everyone knew exactly what they were doing was in Hospital Number 2.  I know this is because I was in the HASU there, so it was all about the setup, but it still remains that I’m glad about this decision.

As well as showing that the artery’s still blocked, the scan also showed a load of other things from the event in October; a little “meteor shower” of hits to my brain, which isn’t that surprising given I had a clot breaking up all over the place for a day.  It’s disappointing I have to stay on the Warfarin, and this all goes on until at least May, but these things happen.  The beauty of the scan is that we know what’s going on and it can be managed, and that’s the important bit.  So what next?

In May there will be another scan, followed by another clinic with Dr A.  Apparently the artery may or may not remain blocked.  An occluded artery isn’t a problem, as there are 3 others supplying blood to the brain, as long as it’s not capable of repeating the ‘meteor shower’ activity.  I will be on “something called aspirin” (!!) forever, but what happens in the immediate future – i.e. getting me off the dreaded warfarin – now gets decided in May.

What else?  The snippets:

  • There’ll be no thrombaphilia test, he agrees with Dr D that would be a waste of time
  • He became the first to ask about stress at the onset of the issue; it can be ‘associated’, though my blood pressure is perfectly controlled… (I’m secretly quite proud of my blood pressure: it’s been measured a gazillion times and, while I wasn’t paying attention for the first few days, since I’ve been out of hospital its always been on the low side of normal, which is where all the medics seem to think is rather excellent)
  • Don’t get pregnant until I’ve seen him in May… no, I haven’t any immediate plans!… but “I wouldn’t want to see a planned pregnancy until I’ve seen you in May”.  Um… ok!

So basically, it’s not over yet.  Ho hum.  Updates will occur, sporadically.  I’m neither joyful nor upset about any of it, but instead just glad we know where we’re at.  The continuation of the warfarin, however, is a bit of a drag.

But two more lovely things also happened today: another lovely friend commented on how welcome and part of it all they felt at the party which again is testimony to both you and she.  And my flatmate E, well, she decided that scan-day meant presents.  So she got me these:

 

Shoes...

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This one’s for you

I just got off the phone with my friend, M.  M is one of the rather amazing people who, when I was in hospital, received a text that I was ill at about 7am and was at the hospital before elevenses on the same day

M came to the afterstrokeparty on Friday.  She tucked her small people up into bed and dashed out of the house as soon as her husband got in from work, which was really rather late.  When she arrived she couldn’t see me.  As she searched, a woman she’d never met before asked, “Are you looking for [my name]?”  When M said that she was, the stranger pointed her in the right direction.  Then M went to the bar to buy a drink; it was really busy. Another woman also waiting an eon to be served, and again a stranger to M, asked if she’d like a drink while she was ordering a round.  M had met neither of these people before the party, yet within 5 minutes she was in shock at how truly lovely you all are.  She felt so welcome and looked after by that she had enough of a glowy feeling that she had to tell me all about you.  Because we are talking about you, my brilliant, wonderful, friends who look after me but also perfect strangers who look a tad lost or like they’d appreciate a drink.

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The Waiting Game

I don’t think my life is much harder because I tore up my neck and had a stroke in October. but not having been in the right places at the right times during recuperation has repercussions.

Time doesn’t wait until you’re back in play before moving on, which can lead one to wondering if things would be different if one hadn’t taken 3 months out.  The obvious answer is ‘yes’ and yet, quite possibly, the truth is ‘no’.

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I didn’t wear heels

I’ve timed this post so that it will appear, as if by magic, while I’m actually at the afterstrokeparty.  Mainly because I’ve only timed one entry before and I wanted to do it again!

I nearly wore heels tonight.  It was a bit of a secret plan, as I haven’t worn anything vaguely resembling a heel in more than 3 months.  However, I decided today that putting on heels on the one night I know I’m going to be on my feet for most of it would be a dumb move, so I’m not.  The flat boots win out again.

Anyway, I hope you’re having fun on this Friday night.  I am.

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And now, the end is near…

Tomorrow is the actual AfterStrokeParty.  It’s not a big deal..!

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Frequently Asked Questions

Yes, the most frequently asked question when I see someone at work that I haven’t seen yet is, “how are you?“.  This is very often followed by, “no, really, how are you?” or, “what actually happened?” but, more frequently, “does everyone ask you that, are you bored of them asking?

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