I’ve still got a few half written posts but they do not matter today. For today is my favourite day since 11 October. Tomorrow is set to be even better.
I’ve still got a few half written posts but they do not matter today. For today is my favourite day since 11 October. Tomorrow is set to be even better.
If you’ve explored the FAQ page, you will have seen I was (am) grateful to have avoided both epilepsy and Locked-In Syndrome. Epilepsy is a possible side-effect of strokes, but would’ve likely transpired during the first 14 days. Locked-in syndrome would have been immediate as the wrong stroke hit.
As it’s name suggests, Locked-In Syndrome happens when your brain feels like it works fine, but you can’t move anything except your eyes. You may have heard of the book, The Diving Bell and the Butterfly, by journalist Jean-Dominique Bauby. Wikipedia says, “it describes what his life is like after suffering a massive stroke that left him with a condition called locked-in syndrome. It also details what his life was like before the stroke.” His secretary would recite the alphabet the order of the frequency each letter is used and he would blink when she got to the correct one, and translate it into words. It only took ten months to write (how, I have no idea) but Bauby died two days after publication, never knowing that he sold 150,000 copies in the first week. It’s a film now too.
It reminded me of a couple of things, one which I feel like I should probably state publicly enough so that people know. If something like that happened to me, please let me go. I like living; I enjoy it a lot. I think I could deal with quite a lot of things if I have to, including a wheelchair or whatever. But if quality of life is minimal or torturous, and I’m not able to communicate the decision for myself; please make sure everyone knows its ok to let me go. I like living, and dying is what happens when we’re done with that; I’ve no desire to be trapped in no mans land in the interim. Just so you know. It’s in print now. I hope you never need remember this, but it is here. In black and white. (Unless I change the blog theme again, in which case who knows what colour this is right now!)
There have been a couple of discussions that I’ve had a couple of times recently with people brave enough to ask, like what death is all about. But there’s one thing I come back to thinking about with more relative frequency than I’ve done before: I think we preserve too many lives.
I do think this. And I haven’t changed my mind. And it bothers me that I haven’t changed my mind. But I haven’t. Death is what actually happens to us all after we stop living. In other times and in other places, death is normal, it’s what happens to people, but here in the Western world we are so set on preventing it that it’s become something that I don’t think it is supposed to be: unusual, shocking, unexplainable. On an individual level, with anyone I love, anyone I know, anyone my friends love and know, of course I want everyone to survive everything, because you are known and loved and its important to everyone we are with them. On an individual level of course everyone is important and needs to be saved. But the bigger picture, I believe, is very different. We preserve life at almost any cost we can manage. In some cases we ‘save’ people only for them to suffer more – and possibly with others – later. We make death out to be truly the worst thing. No matter what you believe (or don’t believe) as none of us have done it, who are we to suggest that is the case? Really? How arrogant can we be? Or is it more that we are scared of being left behind to cope without them?
I know this will come across wrongly in the eyes of some. Possibly because I haven’t said what I mean in an elegant enough fashion for it to be well understood, possibly because you simply disagree and think we should save most people at all costs.
I’m aware that I am alive because someone discovered heparin, followed by Clexane and Warfarin, would make that possible. I am grateful to them, I really am. But as I don’t believe death is an abnormal part of life, I don’t think I’d be angry if they had not. (Ignore the obvious issue with this point, and try to catch my drift!) I know I have the luxury of being able to say this as someone who is not a single parent, and is not solely responsible for other lives, and I know that would make a radical difference to what I felt for me personally, but it does not change the bigger picture for me.
We ‘save’ too many people. The natural order says that more of us should die more often. Mess with the natural order and, eventually, I believe, nature/God/science/karma (delete to taste) bites back. Don’t get me wrong, I wouldn’t advocate stopping research or anything, but I do wonder why that is. It seems like a contradiction in my own mind. But how far do we take it? If its not ok to die, what happens when we can all live forever? When do we shift from pension crises and overcrowding and one-baby-in-China policies to proper global crises?
And when did we stop accepting death as part of life?
I’m torn. I know this is what I believe. I also know there are people I would fight quite literally to the death to ensure they are saved. But I don’t believe I am right to be able to do this, and in some cases to want to do this. We should be better at accepting death as part of life.
I’d genuinely love to know what you think. I know its probably different and you may not like my point of view. That’s ok with me: I’d be grateful if you just don’t hold my own thoughts against me, and allow me the grace to change my mind if someone persuades me to do so (I am a woman after all, it is my perogative!). Find the Leave a Comment button and let me know; you can do it anonymously if you prefer, just pick a name you like. Not everyone things like me… if you can bear the Mail, look here and here and here at stories of others.
But for now, if I’m stuck in something like Locked-In Syndrome, without anyone medical being hopeful that I’d be back – properly back – any time soon, please let me go.
To 1.9. Ok, so it’s not quite 2, but it’s much better than the 1.5 of Wednesday and definitely an upward curve. Waiting to hear if I need to carry on the Clexane jabs. I suspect the answer is yes, but I’m sure that next check (on Friday) will show that I’m above 2 and on my way to 2.5 and that means I won’t need to pack syringes for MSc residential. In the meantime, we wait for the call to see if i need to ask Hospital Number 2 to deliver another pack of Clexanes.
Update at 12.55: Clexane continues until I get to 2.0.
I started writing another post, but I’ve been sidetracked by the notion of the power of words as labels.
I had to fill in a form the other day. It asked for the date of my stroke, the type of stroke, and the ‘name of survivor’. I thought this was being a bit dramatic, and told them so in the comments box. On a facebook forum to which I belong, a journalist posted a request for members to respond to a question. The forum went mad because the journo had referred to us as ‘stroke victims’. “Mate, do we sound like victims to you?” was one of the more polite responses. And NHS paperwork has ‘name of patient’ written all over it. Well, apart from the fact that I can’t work out when I can technically claim I’m no longer a patient, when was the last time anyone put the word ‘patient’ and me in the same box?
I don’t consider myself a survivor. Survivors are people who fought to stay alive. I just let other people stick lines in my arms and learned what to do with the drugs. Victims are people who get mugged or raped or something, or otherwise it’s a state of mind. A patient is someone being attended to by someone medical, which only happens to me a couple of times a week these days. And generally they are sick, which I do not feel. Or someone who has patience, which I do not.
I don’t like the labels. Hearing any suggestion that they apply to me pisses me off. I understand why the facebook message board posters let rip at the poor journo, who just wanted some perspective from people who’ve actually had a stroke. I’ve sent more than one sarcastic text or IM response back to more than one person who’s questioned whether I should be doing something, or doing it alone, or asked me to consider how I feel about what happened on a level I can’t really be bothered to think about in any great detail. I know it happened. I was there. I’m a grown up. I can work out what I can do and what I can’t, and deal with the issues of whatever happens next. I just don’t fancy being a victim. It’s not in my DNA.
But. I do know that all the above words apply. My IQ wasn’t dented when some of my brain cells died. I just don’t like the vulnerability that the terms imply. Would you? I ask, because I wonder how often we apply labels to people that they don’t appreciate, and don’t realise they want to bop us on the nose for doing so (presuming they are more tolerant and less sarcastic than me). I don’t want to be called a survivor because I could have died. I don’t want to be labelled a victim because I didn’t have a choice about what happened. And I don’t want to be termed a patient because, at the moment, I see medical people more often than most other people do. It’s not that I don’t know the words are correct, but they don’t describe me. Not one of them. I’m just me: the same me I have always been.
I am grateful for this. However, I do have sympathy with you, if you know me. Because I am still me. Oh dear. Poor you. I’m afraid you will have to survive being a victim of this ongoing situation. Be patient, eh?
Post script: I wanted to see if anyone else had written about this – someone always has. Anyway, I just found this: Words and Labels. Exactly the same three words (even in the same order). I guess I’m not the only one then!!!
My life is about to begin again, and I’m looking forward to it.
This began on 11 October. I left my office for 10 minutes and haven’t been back since. I haven’t opened an MSc book. I haven’t done a normal ‘go out with my friends’. I haven’t been any in busy/loud places for any longer than it takes to get out of them. I haven’t been away (except to hospital).
In the course of the next two weeks, the following is happening. On Tuesday a friend is coming to stay until Sunday; we will most definitely pace it, but we will not be housebound. On Wednesday I’m going into work for the morning, to be present at an event that I usually mastermind but didn’t quite get to finish before I disappeared for 10 minutes. I’ve a plan for lunch at Borough Market on Friday. And on Sunday, as my friend leaves, I am departing to do the final MSc residential week.
Have I mentioned I haven’t read a single book yet (neither non-fiction, nor any of the gorgeous books of stories stacked up in a lovely, chaotic pile of adventures)? Yesterday, I pulled my MSc papers out. Today I shall look for the sheets of paper with the essay questions on them. Tomorrow I will pull old essays so I can draft a page for a group presentation we’re doing at the end of the week. And I printed out lots of research papers for each essay before this happened; so I will aim to match the papers and books with the essay questions on Monday. Somehow I don’t think I’m going to read anything much beyond that this weekend… but it’s a start.
I don’t know how this works, all the stuff that happens next, but I’m really looking forward to it. I’ll blog more on this later, and may include some (anonymised) excepts of some things people said when I first said I was going to do the residential. I don’t know how this plays out, but I have a feeling it’s all going to be fine.
I’m looking forward to Tuesday very much. And then I’m looking forward to Wednesday. And then… You get my point.
In other news, my friend Mark, who made so many posts earlier on (because he’s such a star at showing up at all the right times), fell over on a mountain the other day and banged his head. The BBC even reported it: “During the operation a rescuer slipped and suffered a head injury.“!!!!! He escaped with concussion. He assures me he’s home and he’s perfectly fine, bar the concussion… But I just wanted to publicly acknowledge, given our competitive natures, that he wins – hands down wins – on modes of emergency transport. His helicopter airlift, during a storm that meant they could only touch down a the 4th hospital they tried, utterly trounces land based ambulances. It’s just a shame your head hurt too much for you to enjoy it. But I am glad you’re ok. Thanks for not being too dramatic on that front. Though I see you’re not listed yet? Well hey ho… get listed and I’ll link straight to the Central Beacons Mountain Rescue Team donation button…!
I believe I’ve told you before, probably several times, that my friends are gorgeous. Not only do you show up, but you skype, email, call, send Cherry Ripes from Oz (Kath) and don’t make me feel like a complete cripple.
One friend came to stay from Germany when I’d been out of the hospital for just a few days, with her husband and 9 month old baby (whom I’m still claiming is named after me!). They very sweetly cooked and generally made sure I hadn’t quietly drowned in the bath, while on their holiday. It was so nice to have them here, I may have shed a tear when they left.
Today I received a package from Germany and from said friend – see below. I’d like to point out she proves my point about the gorgeousness.
Thank you Claudia. And everybody else. Particularly those of you who’ve been here in body as well as in spirit. For everything.
Some stunningly sensible observations and questions have been raised about the graph in the previous post. “That chart is very odd. It looks like the positive coupling between Warfarin and INR is very low.” And “is it anything to do with the Cadiss trial?”
The graph baffles me too. I don’t understand how raising a dose can allow for a reduction in the element it aims to raise (my INR). It can’t have anything to do with the trial I am on. The trial compares the effectiveness of aspirin treatment with that of warfarin. I am on warfarin, which is what I would be on if I wasn’t on the trial. The trial doesn’t dose me, they just take data. They do provide the packets of warfarin, but they come straight from the pharmacy at Hospital Number 2 (where I was in the HASU). So it’s not that.
“When you have eliminated the impossible, whatever remains, however improbable, must be the truth,” or so say Sherlock Holmes (Conan Doyle). So I guess it’s me. One can affect the effectiveness of Warfarin by eating things high in Vitamin K. I’m not really doing that. Initially they were relatively relaxed about me not worrying about this: only one alcoholic drink a day, and vary what you eat every single day, and no cranberry juice, was about the sum of the advice. But as this has gone on I’ve really been careful about greens and things that are listed as being on in the top 100 or so of being VitK rich. They do still pass my lips, but in small amounts if they are incidental to other ingredients in a pre-prepped dish; I’m not buying them on their own. I miss rocket, watercress and spinach a great deal: I reckon they made up at least 15% of my diet, as mixed bags of were my key must-have ingredients before. But unless I’m eating something that I haven’t clocked is chokka full of the stuff…. Of course, there could be something underlying in my blood make-up. But while they will do a thrombophilia (or hypercoagulability) test after I come off the warfarin, both my stroke doctor and my GP think it will be negative. Stroke doctor: “It’s going to be a waste of time, but everyone your age gets one.”
I have asked about other drugs. They say there’s only aspirin and warfarin and warfarin works. This isn’t true but it appears to be the NHS answer. There is more information about other drugs, namely Pradaxa, Xarelto, and Rivaroxaban – see here and here. But I don’t know that they are licenced for use for strokes/anti-coagulation in the UK, and in any case if they don’t know how to use them, I’m probably best off on the warfarin. And I wouldn’t want to do the two-anti-platelet route– see here for why!
(Note: aspirin, herparin, clexane are all anti-platelet, warfarin is anti-coagulant. That’s why I can do the Clex and the warfarin at the same time: they are two different ways of preventing blood clots, or preventing those that are there from getting out of hand.)
So… that’s where we are I suppose. Next INR checks are Monday and Friday next week.
In other news, I’ve got some interesting things coming up – finally! I’m going into work for a morning on Wednesday to observe a very significant event in our annual calendar that I usually mastermind (otherwise I’m not back until the new year). My friend who came back from the warzone is coming to stay. And I’m going to do to my residential MSc moduled from Sunday 6th. More on those, I am sure, later! All these things bring their own challenges, but I’m so ready for a good challenge. I might even sort out my course work and see if there is anything I can start before life life starts happening again, in proper doses, next week!
… and I have two, so why add to them.
Thankfully, my favourite people seem to be coming to me. Thank you for that.
My INR has not gone up to reach the 2-3 range. In fact, it has dropped, from 1.8 to 1.5.
This is getting a tad ridiculous.
The dose has gone up from this evening to 8.3mg. The Clexane syringes, which I moved to the top of the bathroom cabinet, will reappear less than 3 hours after I put them away.
Will draw a new graph when I have regained the will to live.
p.s. I’m not serious about the end of that sentence, but it’s getting very boring. I’m bruised, I bleed, but the INR isn’t up? At least the Clexane is working, I suppose.
I’m a problem solver; a fixer. I have a more official title at work, of course, but basically that’s always been my actual job, in the end. So maybe you can understand why I was curious to see that someone had come to this blog by typing, into a search engine, “what is meant by problem fixing?”. So I googled it to see what happened. And I’m top of the list!!!! Of 193m!!! See:
Google has put me as the top problem solving answer. Obviously there’s been a mistake, but I like it. Just don’t look at the entry immediately below, which made me smile, but then bluster, at the inappropriateness of it getting to number 2 on my list.
Anyway. My next INR blood check is tomorrow morning. I’m hoping it jumps from 1.7 to at least 2, so we can stop the Clexane jabs. I know I always say I think it’s in the zone now, because my belly is so bruised up, but in the past couple of days the jab sites have started bleeding when they’re done and that’s new. And I knocked my thumb today and it bled disproportionately. So, it must be in zone. And if it’s not, I’ll tell them the stroke doctor says to up it to 8mg, I suppose. But I think it’ll be ok this time.
Anyway, keep calm and carry on. After all, what else is there to do?