Three weeks and I'm still not dead

Technically, it's been five weeks since the ablation-and I'm still not dead. But who's counting?

It's been so tough. the boiling heat of the past few days haven't helped. I'm definitely not a hot weather person. It goes above 20C (68F), I start to sweat, my hair starts to frizz (a white person with an afro-not a pretty sight). Then I get very short-tempered - even more so than usual. I'm from the land of air conditioning. I'll need a bigger fan. Or three. Or sleep in the fridge.

I went away for a week. I just had enough of people crashing into me because they didn't have the brains to look up from their phones. Then I remembered where I'm living. Stupidity is the norm; after so many years I shouldn't be surprised. So I picked myself up and went to a small bed and breakfast outside London. Trees, grass (the kind you walk on), a very small, one horse town (maybe even half a horse), and one main supermarket. One. No butchers, or greengrocers, but several hairdressers. So many hairdressers! People clearly have their priorities right...

And the heat really hit hard on Friday. I felt like I should just have someone put an apple in my mouth, stick me on a skewer, put me above the concrete, and keep turning until I reached well done (about twenty minutes). I felt sorry for the smokers. It was so hot and airless that I could barely breathe. Imagine someone who smokes two packs a day. They'd be dying. But-according to all the research, they're probably dying anyway. This would make it faster.

Tomorrow I will get weighed. I'm so (not) looking forward to it. I'm just bored by the whole thing. And two of our nurses just went out on maternity leave last week. Two-out of four. It must be something in the water-I know, I was just making a very bad joke. Blame the heat. I did say to one nurse last time that they couldn't have timed it better. Consultants are going out on strike again next month, nurses will be doing the same, and all the patients will have to learn how to cannulate each other. Hey - it'll be fun! More scars!

Just for a little perspective: my friend in Florida emailed me to tell me that last week the temperature in central Florida was 110F (roughly 44C). In the shade. In the shade! So who am I to complain about 30C? If you're in Florida, that's practically winter.

Global warming? What global warming?

Hell wasn't interested-si I'm still here, alive and kicking-just not as high or as fast

 Three weeks ago I was panicking about the ablation-walking around the house, wondering if I should make a will, and looking at the kitchen (which still needs cleaning) and thinking that if I croaked, the kitchen is a total mess. Nervous? Apprehensive? WTF-someone I don't know, in a place that's unfamiliar, is going to poke around my heart and burn some tissue-and what if the person is a junior doctor and has no idea what he's doing? Nerves? What nerves?

Well. Two weeks ago today I was at the hospital, where I had to wait seven hours for the operation. Seven hours! I probably could have walked home-and trust me, I was so tempted! But when I got there, I wasn't sure how long I was going to be waiting. As it turns out-and they told me seven hours later!!-they didn't have a bed for me, and they wanted to keep me overnight, so I had to wait. And sweat. 

I went outside after I checked in, because they hospital was in chaos: building works. So I walked up the road, and I could have sworn I saw barbed wire. Turns out that it was barbed wire. A notorious men's prison is just up the road. And later, when I sat in reception and was talking with some other patients who were waiting for various procedures, one told me that where Wormwood Scrubs ends, the other side of the wall belongs to Hammersmith Hospital. Of course, I had to comment, didn't I? I said that was wonderful, because if a prisoner got stabbed or sick, all they had to do was bring him to the wall and throw him over. No need for an ambulance.

The man who was standing there, laughing because he clearly thought that was funny, turned out to be one of the two consultants who performed the surgery. Now that was funny...

I'm not going to give you all the gory details of the surgery, and my stay, and how excruciating the whole three hour procedure was (I wasn't allowed to go to sleep, they needed me to tell them when I was in pain-which was all the time), but I will say how relieved I was when they wheeled me into a ward at about 8pm.I wasn't allowed to move for a few hours, but I wasn't bothered about that. They told me that I needed to rest and not do anything strenuous for the next two weeks (no housework. Yippee!!), and I could start walking a little after a week or so. They also said that I will know for certain in three months if the procedure was successful, since it takes that long for the heart to heal.

These two weeks have been very difficult. I have done too much walking, but I haven't been doing a lot of bending, lifting, or doing anything strenuous (I asked them to define strenuous. They just looked at me and shook their heads. Duh...)

So I'm most definitely back. I was told that I would be extremely tired for a few weeks, and that was definitely true. But when I got back, I emailed everyone and told them that I hopefully will not have any more attacks of tachycardia, because the extra pathway in my heart is now sealed. And I jokes that if there's a Hell, nobody was interested. And if there's a Heaven, nobody is interested there, either.

I'm going to be around for awhile-at least, I hope so. We never know for sure, do we? I just hope that I hang around long enough-and healthy enough-to be a pain in the ass to as many people I know as possible. Now that is what I call an achievement!

Overwhelmed, Underwhelmed, and just plain whelmed: back into combat

 Here I am, nearly a month later, a bit scarred but otherwise undaunted (mostly, anyway). I was all set to write again after a week-but like I said, back into combat.

I had a massive attack of tachycardia that lasted nearly an hour. And I was on my way to an appointment when it happened, so I was out and about and in a seriously nasty part of town-one where older people who are obviously mobility challenged are prime targets. Frankly, I was too sick to care. 

I did manage to make it back, but then I had to get from the bus stop to home-which would normally have taken me ten minutes, but this time took me nearly a half hour. I cannot believe how relieved I was when I stumbled through my front door and headed straight for bed. Better that than fall flat on my face. After September's bad fall, I'm not allowed to fall again. Ever.

If you want to be completely incapacitated for awhile, tachycardia is the way to do it. So I had to do combat to get the ablation moved to-next week. Waiting a month is doable; waiting until Christmas (cardiology's first option) is not. So now I have to get ready for someone I don't know to shove a catheter up a vein in my groin and into my heart, fixing the electrical system which has gone haywire, and hopefully this time it'll work. 

Are there risks? Well, yes. I received a phone call from cardiology yesterday, giving me all the details: time, place, must be fasting, bring my medications, etc. Then came a little information about the risks involved: bleeding from the incision site, infection, fluid around the heart, damage to the heart which would require more surgery and possibly a pacemaker (just what I need: more hardware in my chest), and, of course, the big ones (saved for last): the possibility of a stroke and/or death. 

Just what a hospital phobic patient needs to instill faith and confidence in yet another surgeon. But-it's either that or suffer from tachycardia until the heart is damaged permanently. It's a bit like playing roulette, isn't it?

So that is what my last few weeks have been like. Perhaps I should get a suit of armor. Now there's an idea! Only it would be too heavy, I would probably waste no time falling over, and even if I didn't - how would I pee? This, of course, raises the question: how did the knights of old pee?

I got a very pointed email from someone who has been following this blog for several years. And she was not very happy with me. She pointed out that most people want to lose weight, not gain weight, and that I should  quit whingeing about being so underweight. Nobody, she said, wants to hear about someone who is unable to gain weight. So I had to point out that I have been dieting for most of my adult life. I have. I've tried just about every diet there is, even some of the crazy ones. Now I'm done. I will have to stop asking the people who should know-or at least, try to find out-what is going on before I'm thin enough to slide under the doors instead of walking through them.

The latest, before I get off this really tedious topic: I saw a nutritionist yesterday,  she weighed me, and I haven't lost any more weight. She commented that there are people who are walking around with extremely low BMIs- really seriously skinny people ( I said that they look like stick insects), and they're absolutely fine and healthy. Grrr... so up the calories and add lots of fats, and stop worrying because it'll just make things worse.

Oh, I completely forgot to mention the coronation. Oh my goodness, the coronation. There was a coronation. I watched some of it, and was astonished at the huge crowds that took over central London. The armed forces were amazing with the detailed and well executed parades. The horses were gorgeous. The coronation concert on Saturday night was pretty good, with Lionel Ritchie getting everyone up and dancing to All Night Long. Take That closed the show with a show stopping finale-they were fantastic. And the best part of the whole concert. You can tell I'm not a royalist. But it was a bit of history, worth seeing, and I somehow doubt that I'll see another coronation in my lifetime. Woohoo.

Now I'm in need of coffee. And biscuits. I'll be back soon...

Once again, the s**t has hit the fan...even the chocolate bunnies couldn't save it...

Here I was, going to make a joke about the revenge of the chocolate bunnies, when all hell seemed to break loose.

For starters, I got told off for complaining about not being able to gain weight. This was from people who are always on a diet. Believe me, for years I was also on a diet. And now, no matter how much I stuff my face, I'm unable to gain the weight. So trust me when I say that I know what it's like. And I told my friend who is always whingeing about the fact that she's too fat (she isn't) that she should stop worrying and just enjoy life. What an oops!

The colorectal people took nearly five weeks-FIVE weeks!!- to suddenly decide that the biopsy results are inconclusive. They were supposed to order some really important tests-but didn't. Instead, they discharged me without contacting me about anything - excuse me! Here, I thought that I was the patient! They left the tests to my GP, who has been jumping up and down and calling them incompetent (they are). So the immunologist is dealing with everything-and it isn't even her job to do that. But nobody else will, so she's stuck with me. For now.

And I'm still extremely underweight and feeling like a bucket of fertilizer (I'm being so polite, aren't I?). Nobody has a clue. And the best thing I can do at the moment is keep eating, but be mindful of the things I'm eating. My stomach tells me now when I've eaten something it doesn't like.

That is the whole colorectal story, and how, when the NHS is good, it's fine, but when it's bad (like it has been), it is a total pile of shit (so much for being polite). But-at the moment, there are other things on my mind. Like: the complaint I made with the Ombudsman about the London Borough of Haringey. 

Now-bearing in mind that in the many decades I've lived in this country, the only council property I've ever rented is this one, it has been a real eye-opener. No wonder the tabloids are filled with horror stories about abuse, rats (the two legged as well as the four legged), crime, everything you can possibly think of - and nothing is ever done to help people who need it.

The Ombudsman found in my favor-did I tell you? And I've been given an award, while the council has had a strongly worded criticism. I'm still waiting for the money-and if the council doesn't cough it up, on Monday I'm to inform the Ombudsman. That won't go down well, since Haringey is one of the worst boroughs in London.

To make matters even greater-I received an email from the Ombudsman last week. The complaint I made about favoritism, incompetence and racism on the part of the tenancy management team is now being taken up by the Ombudsman as a separate issue. I seem to be making friends everywhere in the council, don't I? 

The lesson here is clear-at least it is for me. Nobody will speak up for me if I don't speak up for myself. Honestly, if you're a woman (of any age), and you're on your own, there are people who will abuse you, threaten you, try to frighten you, do whatever they can to assert their authority (even if they have none). If you don't stand up and fight for yourself and your rights, don't count on anyone else to do it for you-or even to help you do it for yourself.

Maybe I should invest in some boxing gloves. And a suit of armor...

The Battle Continues

 The one good thing about this past week is that I'm no longer blowing myself across time and space (that means: no farting). I was squeaking when I was walking-it was, I suppose, hilarious. At least I didn't have what I've been calling for years an SBD (Silent But Deadly), 

The problem has been the fact that I've done nothing but eat, sleep, wee and poop. I might as well have been a dog. There isn't even anyone to come and scratch my ears...

Easter is this weekend, so nobody seems to be doing anything over at the hospital. I've heard nothing from anyone-except the immunologist, who told me last week that more tests are going to be done. More tests! They are really clueless as to what is causing all this weight loss. My friends are telling me that I have the ideal opportunity to eat whatever I want, as much as I want, and not worry about losing weight. Huh.

If I lose more weight, I won't have to open any doors; I can just slide under them.

Tomorrow I get weighed. It's infusion day, so I'll find out what other surprises are in store for me. I just have to accept that I'm at the mercy of doctors who are clueless. Maybe I'll be one of those people with something so extraordinary, so very weird, that it'll be written about in medical books. As long as it isn't posthumous, I don't care. I told them to fix it. 

So here we are at Easter. I've bought my Lindt chocolate Easter bunny, as I do every year-I might even splash out on a large Easter egg. Oohhh, all those calories! Who cares?

Happy Easter, all. Eat, drink plenty of wine or whatever, and don't count the calories. It's Easter. Calories don't count.

The Word of the Day is: Flatulence

So much more polite than  just-farting...and that tells you a lot about the past ten days or so. 

I had the hospital visit from Hell. So I'll be brief and save all the disgusting details-except that I stand by what I said about the colonoscopy when I said that it was so excruciating that anyone who really accepts anal sex is either a masochist or has no nerve endings. As if that wasn't bad enough, they fill you full of air so they can see clearly. And you start breaking wind before the procedure is finished.

There is no dignity in lying on a table with your backside in someone's face as they're shoving a hosepipe up your rectum; there's even less dignity when you start farting in their face. It was terrible.

Then they put me in a room with three other women, and two of them were incontinent. One  of them was not only peeing all over the bathroom floor, but also has really serious diarrhea. And when I would open the bathroom door I would be treated to the lovely sight (and smell) of floods and piles of poo. I ended up stalking the nurses to find a toilet down the hall that was clean and dry. That only worked for awhile; the woman who was only peeing everywhere watched me, and then followed me to the other bathroom. And she left a river on the floor...

I did say that it was hell. But it got worse. And now I've got less faith and trust in the NHS than I had before (which was already none). They forgot about me. Yes, that's what I said: they put me in a bed on Friday, I was supposed to be monitored and released on Saturday morning-and nobody came to check on me. Nobody, Duh!!!

On Saturday I started annoying the nurses, because I kept insisting that they find out where the doctors were, why nobody was coming to make sure I hadn't died (or escaped. Or been peed on). And nobody knew anything. So I persevered in making a nuisance of myself. One nurse said that she has left messages for the colorectal team but nobody had replied. And nobody replied until 11pm. The nurse came to see me and told me that they hadn't come to see me because I "wasn't on their list".

I just about popped a blood vessel. I reminded her that I'd just had surgery the day before; how did any imbecile leave me off their list? I said that I'm very thin but I'm not transparent. No response.

Sunday morning the consultant finally arrived-and apologized. My face told him how angry I was. And I was even less pleased when he said that biopsies were taken and sent, but the fact was that nobody knew what was causing all the weight loss and weakness. I should keep eating as much as possible-and they would do some more investigations. I could go home as soon as they completed the discharge papers. I felt like I was on parole (never been. I wonder if that's what it's like).

They let me go at 6:00 Sunday night. Incredible or what?? I got home and I nearly burst into tears-not only because they were all so incredibly incompetent, or even the fact that they put me into a room with people who made me want to vomit. I was so grateful to be home, so grateful to have my own bathroom, so grateful to be able to go to the loo and not have to wade through urine and excrement. Really, really grateful.

And in nearly two weeks I have heard nothing from anyone. So all I can do is keep eating and hope that whatever this is gets better soon and I get back to normal.

So we are now up to date. I'm still alive and kicking (just not very high at the moment), and very thin (but not yet thin enough to slide under the doors instead of opening them normally). 

And-I can eat all kinds of goodies I wouldn't normally eat and not put on any weight. How lucky is that?

One damn thing after another - when the fertilizer hit the fan...

 Churchill said that first. And Churchill knew a thing or two about the old saying that things come in threes-except when they come in eights or nines and just keep coming.

When I last wrote I'd been away for a few days, and everything was quiet and peaceful. Of course, that was doomed  to end sooner or later. Sooner, in fact, which is why you're only hearing from me now. I'm either a pessimistic optimist or an optimistic pessimist. Either way, shortly after I last wrote, the shit hit the fan. No shit splatter, though, because it didn't just hit the fan. It was as if I was standing still, minding my own business, and a cosmic sized pile of shit fell right on my head. I've spent the past few weeks digging myself out (speaking figuratively, of course!).

I started to lose weight-a lot of weight-and for no reason. I like my food, so there wasn't the eating disorder that would first come to mind. I started losing weight, then I just wasn't hungry. My GP requested a sample. And it showed the presence of blood. So she sent an urgent request to the colorectal cancer surgeons at my hospital (not the local one, which is known for taking your arm off if you go to the emergency room with a headache).

A word about specimens: the specimen bottles used to be little round ones that were easy to fill. These newer ones are plastic, shaped like test tubes, and if you have to provide a sputum sample, good luck: you need to cough with the top of the bottle next to your mouth, then spit and hope for the best. Now-the other bottles are exactly the same, except that the very small lid holds-get this!-a tiny spoon. Someone who designed these-did they really have a degree in engineering?

The easy-ish way is to use a paper plate. Truly. You have to be double jointed, really. Poo on the plate, trying very hard not to miss and hit the floor, and pebbledash your bathroom. Then-wearing gloves,  obviously, and thanking someone somewhere that your doing yours, not someone else's (wouldn't that be gross), and try to use the tiny spoon to fill the tube-while trying very hard not to laugh.

And the colorectal team sent me for a CT scan, which was supposed to be urgent but ended up taking three weeks for the report to go to the surgeons (bless the NHS for crappy timing).

Meanwhile, I just keep losing weight, even though I've eaten massive numbers of calories every day. And-luckily-tomorrow I will have a gastroscopy and colonoscopy to see what is causing all this.It's a good thing, because if this went on much longer, I wouldn't have to use doors. I could just slide under them.

If you've never had the combination colonoscopy/gastroscopy, you are so lucky! You have to only eat white bread, skinless chicken-all bland foods and absolutely no fiber. I'm not hungry and I'm fantasizing over a peanut butter and banana sandwich! The day before, you drink this stuff I call drain cleaner-because it's supposed to flush out everything that's in your system so the doctor can see what's going on inside.

Oh, joy-you're up all night, and on the day someone plays hunt the vein to cannulate you. I always end up with so many bruises on both arms that I look like I've been on drugs. You get sedated-but you feel it when someone shoves a tube the size of a garden hose into your mouth and tells you to swallow. Oh sure. Have you ever tried to swallow a hosepipe? 

There is absolutely no way to maintain any sense of dignity during these procedures. Once they remove the hosepipe from your mouth, you get rolled on your side and another one gets shoved up the back end. At least-I hope it's another one, and they're not rinsing off the first one and reusing it.

I remember years ago, when I had one of these-and I knew the doctor for years before, so it was more or less okay. I asked him afterwards why they just don't shove one hosepipe down and one hosepipe uf and just tie a knot in the middle. He laughed. Now he's in private practice in Harley Street, making the big bucks. If I could, I'd go back to ask him to handle this. 

At the same time, when it was all over, someone asked how I was feeling. I just had a hosepipe shoved up and down both ends, how do you think I'm feeling?? I just said that the whole thing was so painful-I will never understand how anyone-unless they're masochistic, insane, or have no nerve endings-would ever, EVER, want to have anal sex. 

I'm thinking of having a t-shirt made. It'll be white, with black printing. On the back there will be a huge arrow pointing down, all the way to the hem. On the top of that, in big black letters, it'll say:

EXIT ONLY

Maybe on the front, there will be an arrow pointing up, with the saying FOOD GOES HERE

I'm still working on it. Think it'll catch up?

I'm off to have more black coffee, a load of water, the drain cleaner later-so I'll see you at the weekend, and hope that everything goes according to plan. Huh-nothing ever goes according to plan!