London under lockdown (and meltdown)

Another day, another terrorist attack. I was merrily blogging on Wednesday and got home (my second home: the flat, and it's much easier to just call it "home"-because I'm a really lazy typist!) to discover that another lunatic killed three people and injured many more. This time it was at Westminster, and the sick piece of crap killed a policeman, someone who was just minding his own business. Wrong place, wrong time.

Now the fatality count has risen to four-and I wonder how much higher it's going to get...I also wonder how long it'll take the police to find a pair and arm their policemen (and women) to give them at least a fighting chance.

It's all so wrong. I have been keeping up with the news about this latest terrorist, someone who was born in this country and radicalized somewhere along the way. I had a flashback to last week's racially motivated situation on the bus, and I wonder if people who are clearly mentally ill are easy prey for radicalization. Or-is that being too simplistic?

The city was on lockdown. Westminster was filled with police, forensic people...you name it. But as quickly as the city was locked down-and the threat level was raised to severe-people were out in front of the media getting their fifteen minutes of fame, saying that they wouldn't be cowed. No-blown up, stabbed, run over, but not cowed. Such bravado after the fact. The mayor's blustering made me want to run for the sick bag.

I went to see my friend on Thursday, and I took the train from Liverpool Street Station-a place that has so many commuters at any one time, it should be a perfect target for terrorists. Were there any police, or army, was there any presence at all? Nope, nothing. Nada. Zip. We could all have been blown to pieces, and there was nobody there to deal with it. Amazing.

How do we deal with what the media call the "so-called Islamic State"- which isn't a state, and has nothing to do with Islam, only with nutters who like killing innocent people? Can we really eradicate those who have been indoctrinated to such a degree that they have lost their humanity, and seem to kill for the joy of killing? I wish I had the answer to that. I think a lot of people wish we had the answer to that.

Meanwhile, we can listen to all the bluster, and the false bravado, and the amazing amount of bullshit being spouted by the government, the media-and just about everyone else in the limelight (or desperately wanting to be in the limelight), or we can simply be vigilant, go about our daily business, and understand that by causing trauma, drama and chaos, the terrorists are winning.

I said that I have had seven years of hell, and I stand by that. I've spent so much time at different hospitals, in different clinics, being poked, prodded, irradiated, scanned, bled, and whatever, that I joked several times that I should just move in, since I spend very little time at home. Have I enjoyed it? Hell, no, it has been incredibly frustrating to be everyone's lab rat. I resented it so much that I was ready (several times) to just jack it all in, refuse all treatments, and tests, and go off and live something resembling a life, even if it meant I only had a year in which to do it all. But-something told me not to do that. Was it survival instinct? Or stupidity? Bloody-mindedness? Or the fact that I would miss season 8 of The Walking Dead?

I've just been discharged (yesterday) from the cardiology clinic. The consultant was a bit gruff, but perhaps that is just his way-or he wanted to just drill in the fact that he doesn't want to monitor me, because there is absolutely nothing wrong with my heart, even though the Royal London twits said otherwise. My heart is great. If I die prematurely, it won't be because of my heart. This, of course, is fantastic to hear, since my heart is one of my top ten organs, and I'm rather fond if it.

I sat last night and looked at my diary, and realized that from the first week in April, I have practically no hospital appointments. I have the usual antibody replacement infusions, and the odd consultants-but I'm nearly there, nearly free, for the first time in seven years. Booyah. Next week I have the tests to show that I don't have motor neurone-or anything else, for that matter-and then that's it. I have to think about how I'm going to celebrate-obviously try not to get myself blown to pieces somewhere. Or run over. Huh. The mind boggles.

I've worked so hard to get where I am now. I'm not finished yet. My next step is to start looking for vestibular support groups and see if we can, together, start a class action suit against the makers of gentamicin. But-I won't be obsessive about it. I finally have a chance to start living, and by God, I'm going to take it.

Just when you thought it was safe to come out of the water...

Another day, another day of head down, keep mouth firmly shut.

It's been a week of-well, almost a holiday, because I have no hospital appointments this week. None. It's been seven years, and this is about as rare as finding hens' teeth. Bearing in mind last week's dealing with food poisoning, followed closely by witnessing what may (or may not) have been a racially motivated confrontation, I'd say this has been an okay week. So far. But it's only Wednesday, so anything can happen. Cynic? Moi?

I told my friend in Ireland about the two women on the bus-and she said that it happens everywhere, that people have a chip on their shoulder, or they're feeling like they are entitled to be special-or they're just batshit crazy (she said crazy. I added the "batshit"). I seriously doubt that anyone in his right mind would say the word they alleged that he said-on a packed bus, with children present, and two clearly mentally disturbed people standing there, just obviously looking to start a fight.We all saw it-and, wisely, nobody said anything. Nobody wants to be stabbed, and that happens here all the time.

That did teach me something, however. It showed me that I must never call anyone who crashes into me deliberately (and you would be surprised how often that happens. I should be wearing body armor) an imbecile. Who knows who is armed, or who will just turn around and punch me in the face? I like my face the way it is, thanks. So I must show more restraint and just deliver a filthy look, without the verbal abuse, regardless of how much it is deserved.

And-it's back to the gym, no more goofing off. In July I get retested, and I really want to be a lot further on than I am now.

You'll like this (but not a lot). Last week I was early for my infusions, and I was just turning the corner of the clinic when the Anti-Christ came around the corner with his patient. We looked at each other and said good morning. Personally, I would rather have spat in his eye, but I think that I'm beyond that now (hopefully).

Bucky Buckland complained about the blog in an effort, I think, to have me thrown out of the Royal Free, too-but he failed miserably. Apparently I'm very popular in the clinic, and the staff like treating me-or so I'm told. They, of course, haven't seen me go for the jugular, which I did with Bucky, who absolutely deserved it. So I can afford to smile. 

Not such a muggins after all...

I'm a day late in wishing everyone a happy St. Patrick's Day-late as usual, rather like that well known airline, Every Landing Always Late. But this time, I have a reasonably okay excuse: CBT, also known as Chinese Bad Tummy. Food poisoning. My friend and I decided to go for a Chinese, and that was fine, except that I completely forgot that there is a reason why I haven't been to this local place in over two years-and that was the reason! I won't elaborate: if you've ever had a bad meal out, you already know the consequences.

So, I hope that everyone got wasted, drunk and disorderly (if that's your thing, I hope you went for it), and as long as you didn't hurt yourself or anyone else-or topple into oncoming traffic, or catapult yourself out of a window, I don't see the harm in celebrating. The pubs around me were filled with people who were so paralytic they were gripping the walls, the floors, the bars, each other...it was great fun to watch, at least for as long as I could, under the circumstances!

I've been feeling like a real sucker for awhile; it isn't the first time I've been played, and it probably won't be the last, because I know what it feels like to have cancer and have no help or support (at least, in this country; my friends were very supportive, but they're all across the pond, which does a lot, but not when I need someone nearby).

I discovered - just before the food poisoning-that my neighbor does, indeed, have cancer, and it seems to have metastasized, because he was too afraid to go to get it checked out. This came from his neighbor, who is his closest friend-and, although I criticized him in my last post, it turns out that he is badly in debt, so he couldn't help out. Now Mr. X (yes, I know-another one) is in hospital awaiting surgery, my friend (the one who said I'm a muggins) has gotten rid of the stuff that Mr. X wanted to sell, I got some money back, and everyone's happy. Well-Mr. X can't be too happy, but at least he is being looked after. So things turned out okay (ish) in the end.

Things aren't so great at home, though. Apart from freak snow storms, Trump is still screwing up our country. Nobody shot him yet-unfortunately. What he needs is some Chinese food-laced with rat poison. Very appropriate, I'd say. But, of course, I am a pacifist...

Things are pretty much the same here. The Scottish government is battling Parliament, train drivers are striking, transport is a nightmare for people who spend thousands of pounds every year to commute to work, people are just killing each other for no good reason, and the NHS is in such bad shape that nobody knows how long it will be before the entire system collapses. It's the usual: SSDD (Same Shit, Different Day).

As for me, I'm keeping my head down and trying to avoid being caught in the crossfire. I was coming back from the hospital the other day, and two black women started screaming at some white guy, claiming that he called them the "n" word. They screamed obscenities and threats at top volume, and they were so far over the top that most of the rest of us (the bus was full, and there were a lot of young children on it, too) became very apprehensive. These two deranged nutters just kept screaming, and threatening. If they'd been sane, they would have taken it down a few dozen notches. But he said that he didn't call them anything, and they started cursing at him and at everyone else. If you'd heard them, you would have thought they'd escaped from some mental asylum. And they were looking around, trying to find allies in their abuse; the rest of us (wisely, I thought) didn't give them the satisfaction of engaging with them in any way. I thought there would be cheering when the two loonies left the bus-but no, we all just breathed a collective sigh of relief.

Why didn't the driver kick them off? Because they were clearly demented, and he wasn't going to risk his life getting involved. Too many innocent people have died for much less.

I felt badly about this for a couple of days-although I felt worse about my poor, sick guts-and I can't help but think that people like these two should be under sedation-and treatment. But the NHS is crippled, and slowly dying. A friend of mine called me the other day-I'd left him a message asking him about his wife, who was seriously ill with a malignant brain tumor-and updated me. He said that the chemotherapy worked, and she seems to be turning the corner, although they've now found a new tumor (but a smaller one). He said that he didn't think they would do another course of chemotherapy on her because of monetary constraints, but they will try radiation. I was shocked: no chemo because they're trying to save money?  Don't lives matter? Obviously not.

So there you have it: the update. Next week I have one hospital appointment, the following week I will (I hope!) be told that this motor neurone thing is a load of nonsense, and for the next few months (apart from the infusions, which will be for life), I am a free woman. Yikes! All that cleaning, I will be busy! And back to the gym.

I've had seven years of hell, and seven years of being what I call a "professional patient". I've spent more time in hospital clinics (most of it waiting to see someone) than I have doing anything else. Now I feel like I'm being paroled. Of course, that is usually when something bad happens-so maybe I'll just wait and see. Starbucks is calling.

Muggins has entered the building

My friend and his wife drove over to collect the stuff I got from my neighbor-and, although she was very sympathetic, he told me that I've been played, that all the gear wasn't worth even half what I paid for it. So now his pet name for me is Muggins-because he said that I'm a world class mug. I believe every hard luck story - and I suppose that's true, because I always want to believe the best in people. Oops-what a mug. So he took everything away, and I felt terrible, so he gave me what he thought he could get for it all, and I took the hit. Fair enough-I've known them both for more than ten years, they won't rip me off. Hopefully.

As for my neighbor-he is going into hospital for cancer surgery next week, looks like crap, and even though I know I've been ripped off, I still feel like I did a good thing. His friends wouldn't help him; he would have starved for two weeks. Nice friends.

As for my week-apart from that-I didn't have a single hospital appointment-booyah. I make up for it in the next couple of weeks, but I also retake the neurology tests and see the neurologist. I'm a little concerned, but not as freaked out as I was over the past two weeks.

I told you that my immunology team wouldn't help, because they are  immunology, and not neurology. So I did some digging and found the name and email address of the consultant who has my name on his list. That is how they work it here: every patient is on someone's list, but sometimes (most times) you wait for hours on end and then see a junior doctor. Mine was very thorough, which I appreciated, but I needed answers from my consultant. And, amazingly enough, I got them. Sort of.

I emailed last week and I got a reply yesterday. They test for everything that could possibly cause the symptoms I've been having, and the tests which prove motor neurone will be provided as quickly as possible. This, for me, will be the end of the month. All they want to do is rule things out, so the person who mentioned motor neurone should never have said anything, Test. Prove. Diagnose. Until then, keep mouth shut. So that made me feel better.

I braved the crowds of idiots and went to Essex to see my friend yesterday. In keeping with my new practice of not giving out any names-so all doctors are now Mr. X or Mr. Y-and trust me when I say that I get very confused!-I'll just call her D. I had acupuncture. We caught up. It's a very long journey (three hours), and I probably should find a practitioner closer to home, but it's nice to just get out and get away from London for a day. And it was sunny and warm, so I wasn't complaining.

Now the proverbial has hit the fan about the budget, and people are more miserable than usual (if that's possible). I get really depressed about the fact that I'm stuck here for the duration, and I would love to come home ("home" being over the pond), but I look at what that Neanderthal is doing to my country and I just shake my head in disbelief. With a bit of luck, he'll get kicked out before he does damage that is irreparable.

In three months I return to Queen Square to have all the original tests again, which will be interesting. I've only got three months to get my act together, and to really do the work; I admit to being very sloppy about that, walking but not doing the other exercises. It shows, and this lapse is down to me and nobody else. So, sleeves rolled up, get those weights, charts, cushions, and try not to fall over and break anything.

Nobody is coming to rescue me-I have to get off my backside and rescue myself. Nobody knows how much time we have, even though when we're children we think we'll live forever. Not so-I see people I know (or know about) dropping like flies, so whatever time I have left, I must not waste it.

On that rather sad note, I'm off to Starbucks. It's supposed to rain later, as usual-my flat white is calling my name...

They don't call it La La Land for nothing...

Last weekend was rather meh-I decided that I am not going to lose any more sleep over the possibility that I might have motor neurone. In fact, I'm quite certain that the neurologists are just doing tests to rule out anything nasty, and the person who said something did so out of turn. What a dummy! You just don't do that to a patient-or to anyone. It really is like saying to someone "You've got terminal cancer. But would you like a cup of tea? Want a biscuit with that?". Doctors should be more respectful of patients' feelings (unless, of course, you are an immunologist at the Royal London Hospital. Then it's a given that you don't give a shit).

Now-I never watch the Oscars-or the Baftas, or any of those awards shows, because they're filled with people whose main talent is patting themselves on the back so hard, I'm surprised that someone doesn't dislocate something. The air is filled with hypocrisy and phoniness, everyone sucking up to everyone else-really, it makes me want to start heaving and run for the sick bag. None of those people are doing important things-like, finding a cure for cancer, or finding a way to stop everyone from nuking everyone else.

So, on Monday morning, I heard the news about the disaster that was the Oscars-and I have to admit that I laughed so hard that I got a cramp in my side and nearly wet myself (no-I did say "nearly"). And, to add insult to injury-as if announcing the wrong film and waiting for the other guys to get up to give their acceptance speeches before springing the mistake onto an unsuspecting world-they managed to put a photo of a live person into the memorium section, thereby leaving some poor woman having to declare that no, she isn't really dead.

I'll bet that someone will try to pass the buck and blame some poor clerk-but whoever was responsible for the debacle is probably collecting unemployment. And leaving town-possibly the country-and the continent. You might find them somewhere in China.

I did something really stupid on Monday. One of my neighbors has cancer, and is so certain that he is going to die that he is liquidating everything he owns. I felt really terrible for him: first his dog ran away a couple of weeks ago, then his wife, on being told about his condition, proceeded to empty his bank account and take off. You can imagine what a state he was in! So he was left with less than a fiver, with no food or money for the next two weeks. So rather than just say that I was so sorry to hear that (which I did), I asked him what he is planning to do for the next two weeks. He said that he has a very good drill, and a saw, and a couple of little cameras, and a three year old laptop, and he was going to go around some building sites and try to sell everything (his wife apparently took anything of any value when she pissed off). I suggested putting signs in local shops, or posting everything online. But he said that he is also diabetic, and he couldn't wait that long. So I said that I have a friend who does a lot of building work, I could call him and explain the situation.

I did this-and my friend said that he would buy everything, but he was doing it because of the situation, and that he would move everything on, probably sell it at a loss. What a hero! So, I went to my neighbor, I gave him cash, took the items, and stuck them in the car, waiting for my friend to come and collect them. My neighbor still thanks me a million times for saving his life-which made me feel a bit uncomfortable, but I didn't feel as if I could do nothing, given the poor man's condition. He even showed me the hospital letter-so there you are, both my friend and I will take a hit, because the stuff isn't worth much. But-at least my neighbor can eat for a couple of weeks. The update I got from him when I saw him in the car park yesterday was a confirmation that his cancer has metastasized. Did I do a stupid thing? Am I a mug? Probably-but I have a tendency to believe people when they are in trouble, and I felt that he was in deep trouble.

That was my week, basically-I did a couple of hospital days, and I've emailed the head of the neurology department to ask him to review my notes and tell me exactly what is going on, since I don't get to see anyone until the end of March. People might call me a bitch because I insist on getting things done, getting answers to my questions, forcing people to actually do some work-but I don't sit on my ass, so I don't allow anyone else to sit on theirs.

You know how something happens and it triggers some random memory, something you thought you'd forgotten? Well, my head must be filled with all kinds of random junk, little bits and pieces of-I don't know what, but some of it's very entertaining. The Oscar disaster made me think of my old friend and neighbor, Hayley. I've got no idea why...

Hayley used to hold Ann Summers parties to earn a little extra cash. She would invite people over, and an Ann Summers rep would show all kinds of lingerie (some really racy stuff-for the time), whips, chains, handcuffs, and some battery operated devices that were so big they made my eyes water. It must have hurt like hell to insert one of those...but anyway, she invited her friend Linda to the same party I attended. And Linda was heavily pregnant.

Now, Linda sat there and whinged about being pregnant, and insisted that she was only pregnant because (you might want to sit for this) she left the lights on. Excuse me?? I asked her to repeat what she had just said, and she said that she used the rhythm method, but left the lights on and that's why she got pregnant. Want to guess where she's from? Yep-somewhere in Essex there's a village that's missing its idiot.

I ran into Hayley some years later, and she told me that Linda now had ten children, but from seven different fathers. She said that Essex council had to provide Linda with two council houses that they knocked together to accommodate all those children. And I said, she must have one hell of an electricity bill. Plus, with all those children, it must be like tossing a sausage into the Grand Canyon.

What a scary thought.