Just when I thought it ws safw to go back in the water...

I know. It's been months. And I haven't been bone idle, either. Have I got news for you!

First things first. The door that I've justifiably complained to everyone who has any power anywhere finally was replaced-after six and a half months of verbal threats from me (you can see how much good that didn't do). 

The problem was that the workmen brought the wrong door. Yes, you read it correctly. They ripped out the broken door and the broken door frame and then discovered that they had brought the wrong door. It was too small. Can you believe it?? So they tried to make feeble excuses about being given the wrong dimensions. Well. We know that didn't work. So they had to build a larger fame to fit the much smaller door, and then go back to wherever they keep the doors and get the right door numbers. Obviously they had taken someone else's door-and because they had already ripped out everything, they couldn't just leave a big hole while they tried to find the right door. So it took them six and a half hours, there was dust and dirt flying everywhere (it took days to clean up the mess), and that was it.

The kicker? A few days later I got a phone call from the door manager. He is one of only two people in the entire council -in all the years I've been there-to actually apologize. He said that he searched and found the right door: the right size, color and numbers. I said thanks for that, I can live with the new door-only I do keep opening it and smacking myself in the face, because it opens on the other side. I was being facetious but he took it seriously. He then asked me if he could send the men back the following week to replace the wrong door with the right door. He would be happier. So I agreed. Poor guy really seemed upset.

The door was replaced. The frame was removed and destroyed, a new frame (the right size!) was installed and the new door fitted. Four and a half hours-and more hours (days, actually) to clean up the mess. There was dust everywhere, even though I closed the doors to every room. But the door now looks fine, it works, it opens and closes, and it locks. I'm allegedly much safer now.

That's the door story, complete as of yesterday. The second team left cables hanging from the ceiling inside the front door, and the ceiling around the front door needed painting. Again, I could have just found someone else to do it; the manager was insistent. What a hero!! The painting is done, the cables have been secured, and NOW the door story is hopefully ended. What a relief.

If only everything else in my life wasn't up in the air, it would be a bloody miracle. Just when I thought that all the different consultants would say "see you next year"-no such luck. I had a failed biopsy-after the imbecile Dylan broke the port last year when he had a tantrum, the woman doctor who did this biopsy couldn't find the nodule. She couldn't find anything it it was the size of a dinner plate. And there were two of them. 

The shorter version: another PET scan showed two nodules-malignant ones. So I've got cancer again. I will have surgery in three weeks. The same consultant as last year will do the honors and I will have to stay in overnight. Fortunately, he's got a sense of humor. I was so unhappy to have to go through this again, that I just looked at him and said: please don't remove anything that I really need, don't leave me with a stroke, frozen shoulder or a drool, and by the way-this time I want morphine". He did see the funny side, and he said that we'll negotiate on the day. When he asked if I've ever had morphine I said once after major surgery twelve years ago. I don't remember it, but I've heard it's quite nice.

So now you're up to date-even with the not-quite-exact quote from the film Jaws. I certainly will never ask: what could possibly go wrong??

Anybody else really in need of a suit of armour-complete with a white stallion and a long spear with a very sharp tip?

 Exactly. It's been that kind of year so far-and it's only August! I can hardly wait to see what next. What a joy it has(n't) been. But I'm still here, still fighting bureaucracy and incompetence, still telling people off. I'll probably never change. But unless you speak up and fight for your rights, you get treated like you're something that people stepped in. Interesting how men who speak up and fight for what's right are called brave, forthright, unafraid of whatever might be said against them. And they persevere until things are settled to their satisfaction. But women who do the same are labelled as heartless bitches. Hmmm...

Well, you know about the doctor who performed the biopsy-and couldn't find the nodule if it was the size of a dinner plate. So now I'm getting another PET scan next week. More radiation is on the way. I'm told that it's safe. That's what people said about the COVID  vaccine. I had several, and I'm done with it. Too many disgusting side effects. But I did tell the oncologists that if they want me to return to the breast clinic for another biopsy they can totally screw up, they can book me in when hell freezes over.

There is positive news, by the way. You've been with me through all the drama-and there has been a lot of drama! Remember I told you about the front door, and how the idiot landlord's representative lost the key? I had a go at them about that-for six months I've been having a go at them, asking how anyone who is so incompetent and dimwitted could do such a thing and not be sent packing. Well-I've been to everyone who could possibly be of some help (there are people who have working brain cells and work for the landlord. There aren't many, but there are a few). I found one. And he was so sympathetic that he gave the job to someone else who actually could do something. Two people out of- hundreds, perhaps? Two people who have functioning brain cells and not just a head filled with toxic waste.

My new door will arrive on Wednesday. Sometime in the morning the old,crappy, broken door will be removed and a new, strong one (complete with a new doorframe) will be inserted. Finally that is one thing that will be sorted out and one fight which took six months but shows the value of perseverance. I said to Matt, who is in charge of the door situation, that I hope that the brain damaged keyholders won't lose the key again. I could hear him groan down the phone line. But I'll let you know how it goes. Maybe one less ulcer to worry less about developing!

That's the update-so far. I'll be straight around to let you know how it went. And now it's time for a very strong coffee.

Multiple surgeries, one failed biopsy, the heatwave from Hell- and I’m still here

 It has been dire, it has been tough, but nobody has succeeded in killing me off-yet.

I had the non-working portacath removed after I posted last, and discovered that the moron who inserted it put the catheter too far up the vein in my neck- and twisted the rest of the device so that it never worked properly. So a vascular surgeon had to remove it. Sedation? No-a local. Did my eyes ever water! A week later a new one was inserted. Properly this time! Any sedation! Only a local. They like to see patients cry.

To add insult to injury: they gave me two weeks to recover (only one last time) and decided to do the biopsy that was supposed to have been done in December. Slow, or what? And the doctor who performed the biopsy missed the nodule completely. The thing was the size of a dinner plate- and she missed it (okay, a small dinner plate!). I could have leaned over and done it myself.

This doesn't quite bring you up to date- there is plenty to add- but I’ve borrowed this iPad to just let you know that, despite their best efforts, the cancer people haven’t managed to kill me off yet. My incredibly supportive friend and I are off to see the new  Jurassic Park. I'll probably recognise some dinosaurs (they’re called doctors and nurses).

Ever feel like you're walking on a tightrope,10000 feet above the ground, with no safety net-and a fear of heights?

 And that's how it felt over the past two months (nearly) since I last wrote. It has been a very trying few weeks. I must admit, there were times-many times!-when I just wanted to walk away and go somewhere in the middle of nowhere. I did have to practice a little restraint. So now I will give you a quick (am I ever quick?) overview.

I'm not sure if I told you about my front door. Three months ago (soon to be four months ago) I was coming back from the hospital, very sick with flu that turned into pneumonia. I'd locked my front door, collapsed on the bedroom floor, and lay there for four hours-until the fire brigade had to break down the door so the paramedics could get to me. The landlord, who had everyone's keys (it's the law, apparently. But then, so is murder, and we know how well that is handled), lost (or stole) the key. These idiots - who are supposed to make sure that disabled people are safe and secure, LOST the key.

I'm on an elbow crutch, I just had cancer surgery six months ago, and I'm considered to be very vulnerable. I don't consider myself disabled at all. But that's a story for another time.

Nearly four months later, the door has still only been patched up-it's broken, the door frame is broken (strong, these firefighters), and nothing is being done about it. And they picked on the wrong person. I'm a fighter, and I contacted everyone I could think of: the MP, the Labour councillor, the repairs team (repeatedly. I know most of them by name now-and they're all still as totally useless as  they were at the beginning of February.), the housing people-and all that I accomplished was showing  them firsthand how useless, hopeless, helpless and incompetent they are. So I went to the Ombudsman.

Now, there is a housing ombudsman who handles all manner of housing disputes. I contacted them two years ago, and again at the beginning of last year. They found in my favor both times, and the landlord was fined. It made absolutely no difference-but this year the law changed.

If the housing ombudsman finds in my favor  this time, they have to take the action that is given by the ombudsman. It's now against the law to do nothing, and the landlord will be given a very steep fine if they don't do what they're told to do. I spoke with the ombudsman on Friday, sent photos, explained everything, and the person I spoke to was shocked by the photos and the landlord's refusal to provide a new door. When I told the claim handler that the landlord LOST they keys, he said that I shouldn't worry. They will take action. How long will it take to be resolved? At this point, your guess is as good as mine.

Apart from the door, other things have kept me busy over the last eight weeks. You know that I've had a chemo port in my chest for over 12 years, and last year some bad tempered idiot called Dylan smashed it while doing an ultrasound. It was replaced in September. and the operation was torture, because the radiologist didn't give me enough sedation. Never again, I said at that time. Oops! Never again-until now, that is.

The port has kinked and isn't working. And my veins are practically nonexistent in one arm, so-the current port has to be removed. I've only been fighting and chasing that up for over a month. The port is due to be removed on Friday; a new port will be inserted on the following Friday. Trust me when I tell you that they're not going to screw around with me this time. 

And that is an update-of sorts-of the time it's been since I last wrote. Is there more? Of course there's more, there always is! If I can write before Friday, I'll update you on the rest. If not, I will write after the offending port is removed. I'll only be able to use one arm for a few days, so I'll be writing with my weaker hand. There will be a lot of mistakes and loads of swearing-but hopefully whoever is doing the removal is someone who isn't going to make a total mess because he will know what he's doing.

I almost would prefer walking on a tightrope. Almost. Then again, maybe not! 

Which one is the monkey and which one is the organ grinder?

 It's really so difficult to tell the difference these days. Just look at the governments- everywhere. Honestly, we should have all put monkeys in charge-and I mean real monkeys. They're much more intelligent, more clever, more useful, less antagonistic and egoistic-and, let's face it, they're much better looking. 

You can tell that it's been a rough time since last wrote. I had the super flu-maybe the super duper flu-and I was too sick to get out of bed and create chaos and mayhem. And now I'm back to normal (ish). My cough sounded like a combination of a lawnmower and a chainsaw. It was frightening-but people heard it and got out of my way very quickly. I'd rather just be able to trip them with my elbow crutch. My lungs would thank me.

I'm back in the fight with the hospital. This time it's over the antibiotics that I need to nebulize. The GP refuses to prescribe them because the local plonkers who decide what drugs are acceptable (read that as being what drugs are cheap) have denied a whole family of antibiotics-not the really poisonous and noxious ones, mind you, but the expensive ones that work and don't almost cripple the patients. So I'm in a fight (verbal, obviously. Anything physical and I would just fall over).I'll let you know who ends up with the (virtual) black eye and bloody nose. I'm American. We fight. Then we sue. 

Like I said, it's increasingly difficult to tell the monkeys from the organ grinders. Go to any hospital clinic and everyone-even the receptionists, who sometimes know nothing, act like the organ grinders. This is what happens when you deal with the dross of the NHS.

Something interesting has happened, though. Since my vestibular (balance) system was completely destroyed (by monkeys who thought they were organ grinders), I've had a very tough time learning how to walk again-and a tougher time staying upright. Even my bruises have bruises (just ask them). But-the Dutch have developed a balance belt. It doesn't stop you from falling (I learned that the hard and painful way). It vibrates when the wearer is not standing straight. The belt is filled with electrodes, I switch it on while I'm wearing it, and it vibrates furiously if I'm leaning to either side (or front or back). It is an alert system that tells me when my balance is off kilter. 

The belt doesn't send information wirelessly to the developers. It exists to tell the wearer when they are not standing (or sitting) straight. And it does work, although I wear it around my waist and the vibrations make me feel like my stomach is rumbling and I'm hungry.

The funny thing about the belt is that it emits a low sound to show that it's plugged in and working, If someone is standing close to me they can hear the sound of the motor. It isn't loud, but it is noticeable. I was standing next to a neighbor (one of the gossipy ones) the other day and a few of us were talking. She demanded to know what the sound was-interrupting someone else-so I said: what sound? Don't you hear that? she asked. There's no sound. Are you sure that you don't have tinnitus? I'm going to have this checked out, she said (I'm not being grammatically correct-but today I'm an extremely lazy typist). Now- this is also the person who swore that she was suffering from Ebola when the epidemic began. The rest of us will be hearing about tinnitus forever.

That brings you up to date. On Friday I get to have a frank and open discussion (verbal fight) with the hospital about prescribing the antibiotic I'm supposed to be taking every day. Hopefully no more clattering and sounding like a bag of hammers.

Talk over the weekend. Bloodied but unbroken. 

And here I thought I'd got rid of the worst five years in living memory - wasn't I ever wrong!

 I wrote just before Christmas, and I'd decided to hibernate -as I've been doing for years - until it was all over. Christmas has always been traumatic: deaths, divorces, all manner of things. So I decided to opt out. Unfortunately, life still throws a curve ball. 

Two days before Christmas, I received a phone call from the oncology clinic. They had done yet another PET scan (they just love to irradiate people), and it showed two suspicious nodules. The team met on the 23rd and decided to order yet another scan to see what was going on. I asked if I should be concerned. I was told-after a lengthy silence-that nothing would be done until after the holidays, and everything would be seriously behind, so enjoy the holiday and don't worry. Yet. Wow-thanks for that!

That was Christmas: spent worrying about cancer returning yet again, when I thought that the surgeon got everything except maybe, a lung, my heart...you get the picture. Not a pretty one.

When it was January 1, 2025, I celebrated with friends, and we all commiserated over the preceding five years of torture and angst. There was plenty of that, and we decided that we would make 2025 the start of a terrific five years-to make up for the pandemic years. And then

On 6th January, just when I cautiously thought that I might be out of the woods-hah! In the middle of the night, I got up to go to the bathroom (as you do) and I fell. Hard. On boxes of books and bags that were going to the charity shop the next day. I fell hard, with absolutely no warning, and I broke three ribs, and caused a lot of soft tissue damage. And that was me, completely helpless for a long while. I ended up being unable to move very well for the next six weeks. I was lucky; I could have punctured a lung, broken my back, I could have caused so much more damage. But broken ribs were enough. If you've ever had them, you know exactly how I felt.

Oh, hell, there went the first month of the new year. And then I fell again. Two weeks ago. Now if you've followed this for awhile, you know that my vestibular system was destroyed fifteen years ago, and my balance (such as it isn't) is still an issue. I do work on it as much as I can. The damage was permanent and irreversible, but I never give up, I just push myself as much as I can. Two weeks ago I pushed too hard.

I was coming back from a workshop at the hospital, and I was feeling quite awful. The swabs they took turned out to be positive for Influenza Type A-the worst and most virulent flu virus anyone can get (so the consultant told me). I fell and I couldn't move. I had no strength at all, I just lay on the floor and I couldn't get up. So I had to call for help. I had my phone in my pocket, called for the paramedics, and four hours later they arrived. They brought the fire brigade with them. Did they pick the lock, like a normal person would do? No, they broke in, probably giving the neighbors coronaries. They got me up off the floor, did the usual observations (temperature, etc), and told me that they would take me to the hospital if that was what I wanted. But I didn't have a fever, it was 9pm by the time they left, and they told me that if I felt worse the next day I should go to A&E.

The on call consultant rang me the next evening and told me about the flu diagnosis. I started antibiotics and I was told to stay in and rest (as if I could do anything else), take ten days of antibiotics and let everyone know how I was feeling. Meanwhile, he told me that I was contagious, so I stayed away from everyone. 

I completed the course of antibiotics on Sunday. Yesterday |I felt so sick that I couldn't even get out of bed. So today I decided to make the effort to actually get outside-even though it is absolutely freezing- and bring you up to date. Still here, still alive, feeling like a big bag of total crap-but I can't stay in bed forever. I need to get moving. 

I'm lucky, as far as I am aware I will get over this noxious infection-although I've been told by the consultant that it will take a few weeks for me to return to normal. I'm aware that, once again, it could have been much worse. Now I have to be vigilant-more so than usual- and always keep in mind that I have been very, very lucky. But I know that eventually luck can run out. When in doubt: wear a mask. You can never be too careful.

Time heals-except when it doesn't - and I'm still here, which proves that only the good die young. The fat lady hasn't sung-yet...

 I know that  it's been awhile-again. I decided to wait until I had something resembling updated information. 

I said last time that there are things I omitted to tell you. The port was removed in August-and the new one inserted on the other side. I had to fight hard to get that done before the big surgery would be performed, so the idiot doctor who massacred the port took three hours to do both: remove the old port and insert another one on the other side of my chest. He took three hours-and gave me only a local anesthetic. A local! No matter how many times I told him that the pain killers weren't working, he ignored me and kept on going. I wasn't in a position where I could move and kick him, either. And it took me a week when I got back to recover. Talk about karma? 

Whatever did I do to warrant these five years anyway? Was I a serial killer in a previous life?

Anyway, my big surgery was performed by the clinical lead, so my efforts to find someone who knew what he was doing were successful. Even he wanted to do the surgery under a local anesthetic. Are these people crazy or what?? Obviously I said that I would have a general anesthetic or I would cancer the surgery. So-that was a good thing, because the operation was very long, and he ended up removing fourteen cancerous tumors. That's right: fourteen. I was gobsmacked-but I was also glad that I'd held out for a general anesthetic, too.

Sometimes you just have to fight for what is right and just, and not care about what other people  think. Who cares? They're not me, so the heck with them. Do the right thing.

The op was in October, and I have been taking the - I'll call them estrogen blockers, it's shorter to explain- since the end of July. I have to take those for five years, and deal with the nasty side effects for the duration. I'll just deal with it and do the best I can not to fall over...

The surgeon sent me to the medical oncologist, who wanted me to have either chemo or radiation. I refused both. I decided to remind her of the last five years, when all systems seemed to quit. So she gave me two information sheets about tablets that I would have to take in addition to the ones I'm already taking. Side effects are brutal. One of them would require bloods being drawn every two weeks, because I could end up with leukemia. Great.

On Wednesday I had a meeting with the medical oncologist, and I refused to have chemo or radiotherapy, and I refused to take the tablets. She told me that  I would be refused the tablets anyway because I hadn't had chemo. Thank god for that. And I had a PET scan two weeks ago, which showed a few suspicious nodules which will now be investigated. But I did ask to have the next few months off. I said that I would self examine (how I found the first tumor in the first place), that I would be mindful of any symptoms that felt wrong, that I would keep taking the medication that I'm already taking, and that we could do another PET scan in the spring. She looked so relieved! They just don't know what to do with a patient who is educated and can think for herself. So she agreed, and said that someone would contact me if anything on the PET scan needs further action. 

Another PET scan is preferable to taking medication that could leave me with leukemia. And when I left the department after the scan I said to the technician that I would be sterilizing everyone within a hundred meters on my way home. Radiation anyone? He just laughed and said that I would be doing everyone else in the area a public service.

And we are now up to date. I tried to keep this short (ish) because I was told by someone who actually follows this blog that I tend to make a short story very long. Huh. How dare she? 

Now I'm getting ready for the holidays. In May |I wasn't sure that I would even see this Christmas. I thought that my time might have run out. So after eight months of fighting for my rights, being afraid that I wasn't going to make it-I'm almost here. Miracles happen. And at least I can rest easy knowing that I'm not going to croak before I clean my kitchen. Just imagine someone coming in and saying that the person who lived here was a terrible slob!

Where am I going now? Starbucks. Where else? But I'll be back before Christmas (this Christmas) to bring you the next update.

Please remember: fight for your rights if you need to do so. Nobody else will do it for you.

IF i had nine lives< I'd be down to the last two--Just call me lucky...

 

In April, I was feeling smug. Lesson learned: never feel smug unless you want to be kicked in the behind. I finally won my argument with the hospital and got enough Promixin to last until Christmas. I was so annoying and so determined that they gave in just to get rid of me. Of course, as I was going to put all this in writing, I discovered that the company that makes the INeb-Phillips-is now discontinuing the INeb as from Christmas. All that hard work for nothing? Well, not exactly. I'll be using the INeb that I've already got until it finally stops working. 

There I was, in April, ready to write and tell you that if you make yourself a big enough pain in the backside-and you just happen to be right-you will win (if you don't give up),

So just as I was ready to play catch up, I was poking around under my arm-for no apparent reason, since I no longer do breast exams (no point, when there's nothing there to examine), and I found it: a lump. It wasn't just any lump, it was the size of a marble.

That was on Friday. I rang the GP's surgery and requested an emergency appointment. I was told that someone could see me in two weeks. I said-that's no good. I found a lump. Where is it? The idiot receptionist (trained to be useless?) asked me. I wanted to be a smart ass and say it's by my left knee-but I thought better of it, and said that it's a breast lump, and I think that the cancer has returned. She told me to hang on, and then said to come in at 4pm that afternoon. Even the word "cancer" strikes fear into the nastiest of people.

This began nearly seven months of absolute hell. The GP felt the lump, said that there is a second one, and has referred me back to the Royal Free Hospital's breast cancer clinic. It only took five weeks to be seen by a consultant-and it was the same consultant who performed the mastectomy eleven years ago.

I'll skip the tragic mismanagement and negligence for next time. It will be a story that you'll struggle to believe-even though it's absolutely true. But I was finally sent for a biopsy-which took three weeks to come back, because the lab lost one sample. Seriously-I said that it was too inane to possibly be made up. Then I was sent for scans: PET scan, bone scan, CT scans, ultrasounds, more scans. I said that it won't be cancer that kills me; I'll die of radiation poisoning.

The consultant finally decided-at the beginning of July-to operate, to use a wire and secure both (now large) lymph node (malignant) tumors. On July 26th I reported to the hospital-more drama, again I'll save this one for next time. But an hour before the surgery was due to start, the surgeon came to me and said that he cancelled the surgery. He said that the PET scan-taken in May-showed several tumors, and he wanted to wait to decide how to proceed. So I was sent home. He told me to come in on Monday to see the doctor; I asked if he was going to see me, and he said that no, he was now officially on holiday. Did I mention just how inept these people are? 

On the Monday I was told that I needed to start an aromatase inhibitor-tablets which stop the production of the enzyme that provides estrogen. I would see the surgeon in three weeks. Seriously. Three weeks??? I said that I've got cancer in ly lymph nodes, and discovered it in April, it was now the end of July, did they think that lymph nodes just sit around and play poker? Yes-with my life.

I'm going to end this chapter for the moment. I went to the complaints department at the hospital executive offices (you knew I would do that!) and miraculously my cancer surgery was booked in for two weeks ago. So I'm finding it a little tough to be able to lift my arm-but I'm doing the exercises I was ordered to do (religiously) and I'm not in nearly as much pain as I was before.

When do I get the results of the histology tests? Allegedly on Tuesday afternoon. I say "allegedly" because I can't trust the breast cancer people to bend over and tie their  own shoelaces, let alone get some diagnosis and treatment right.

So now you're all up to date-and the rest of the revolting story I'll save for next time. I will, however, caution anyone who is sent to the Royal Free Hospital, breast cancer clinic, to refuse to go there and demand a referral to another hospital.If I'd had any idea at the beginning of April that my life was at risk and that  I was going to go through nearly seven months of torture, I would have done a runner. 

See you soon. This time I hope that I will have better news. And what I can say is never let anyone else decide your future without your full consent.Cancer is scary. Having some incompetent imbeciles making a total mess of your case-and your life- no wonder so many people die of cancer, They're sent to the Royal Free.

Pet the monkey and go straight to the organ grinder

 Not dead yet- came close, though. In the beginning of September I had breathing problems, was told to go to the A&E (emergency room)-which I thought would kill me off faster than whatever was wrong with me-and turned out to have blood clots in both lungs. I resisted going-but was told that I would be dead by the next day if I didn't go. So off I went. Talk about being incredibly lucky.

I was on anticoagulants for six months-SIX months-before someone decided to do a CT scan to see if the clots were still there. I self injected every day-and every day I felt like I just couldn't function. It wasn't just a side effect of the blood thinners. It turned out to be a side effect of the blood clots. I know that because I pushed and pushed hard-and pushed some more-for some answers.

I once told you that the best piece of advice I was given as a teenager came from my grandfather. He said that I should always remember-especially when I was old enough to start working-to ignore the monkey and go straight to the organ grinder. So many times I ignored that advice and so many times I ended up shooting myself in the foot. Now I know better. But-you only persevere if you don't mind making enemies. I've got loads of those now.

I started to insist that I have a scan in December. That would have shown progress-or regress. But I wanted to know, because I felt that bad. The NHS being what it is (crap), had nurses taking the clinics. The doctors were obviously far too important to take the time to talk to a patient. I was told by a haematology nurse that I wouldn't have a scan until April. Why not? Remember that I was fed up with being fobbed off and started to push. Her answer was that if I didn't see results I would be upset. Seriously!

Now I last wrote in January, and I finally saw a doctor who ordered the scan. But-this is after the first haematologist forgot to order it! And I still had to self inject, so I was losing a lot of weight and I was pretty incapacitated. I wasn't sure which was worse: the condition or the cure. The CT scan-which was supposed to be reported the following week-wasn't reported for over a month. The bottom line? No blood clots. However, I will have to take tablets, probably for life. Nobody knows what caused the clots, how long they were there before I showed any symptoms, and-nobody has a clue,

But the best part of the story is about the antibiotics that I have been nebulizing for the past fifteen years. The family doctor suddenly decided that she wasn't going to prescribe them any more. Apparently they're too expensive. That's because they work.

No matter how sick I felt I knew that I had to start yet another fight. Organ grinder. The process of getting what I both need and want started in the beginning of January, and is far from over. But-threatening to go public, making a formal complaint against the hospital (I can tell you another time about that one), and, of course, the possibility of a lawsuit made the hospital capitulate. I've got enough of the antibiotics for the next three months. They're all probably hoping I'll be dead by then so they'll save money.

That brings you more or less up to date on the big stuff. I'm determined to have a life-finally-because I've spent the last six months (now nearly eight months) both fighting for my life and fighting for something that resembles justice. I can tell you that if you have the patience and the perseverance-you will win. Even if you don't win, you will never lose. It takes a fight. It also takes the refusal to listen to the monkey.

Now it's time for a very strong coffee...

Missed the holidays, contracted Covid for the third time, and still alive-but a few lives down...

I'm lucky that I'm not a cat. I would have two lives left-if I'm lucky. It's been that kind of six weeks or so since I last wrote. I missed Thanksgiving, Hanukkah, Christmas and New Year's-and any others that I missed, well-apologies. 

It's now been eighteen weeks since I started to self inject the anticoagulants; I'm still feeling like crap-only this time, like Covid crap. I was too unwell to actually sit and write in December. The blood clots, chest pain and breathlessness-and severe tiredness-meant that I really couldn't go out anywhere. I'd suddenly have to stop and grab my chest-not that doing so would make any difference. I was totally miserable and I was feeling very sorry for myself. Add to all this that everyone around me seemed to come down with a super virus that left the victims sick as can be for at least two weeks. Hmmm...

But-like the seasons (not that we have any over here), everything changes. The very severe and arctic cold weather, the torrential rains, the violent windstorms- they all kept going on and on and on-along with my symptoms. I  knew that it couldn't last forever. Either I would die or I would get better. Obviously, I didn't die. So I consider myself lucky. 

I'm not in nearly as much pain as I was eighteen weeks ago-or even eight weeks ago. I still get breathless, sometimes too often-but the anticoagulants are most definitely working. Now I have to fight to get a CT chest scan to see if I can get off sticking needles in my abdomen. That stuff hurts!

And there's more. I flunked a PCR test two weeks ago-so there I was, still walking at the crack of 6am, in the dark, complete with mask (and crutch), determined that nothing was going to stop me from getting outside and getting what passes for air. I am very fortunate (once again) that I had the variant, and it wasn't nearly as life threatening as the Covid-19 of four years ago. Four years! I didn't think that I would be affected by Covid four years ago, but I certainly was-and so were you, probably.

While things were beginning to go quiet-or, at least, quieter- now I have an update that will make you roll your eyes in disbelief. I still shake my head, thinking that there are some absolutely insane people out there. We know this, since you've read about a few of them. But this one is a corker.

Sharps bins are not to be left with the pharmacy, or the doctor's surgery, or even the hospital. Since the pandemic, the NHS has contracted a company to send their drivers to collect full ones and deliver empty, brand new ones. So-six weeks ago I shut and locked the full sharps bin (30 needles and syringes), bagged it, and left a large note on the bag, which I had to place outside the building. The collection could be anytime between 7am and 4pm, and someone has to let the driver into the building. I leave well before seven to go to the hospital for infusions-so I left instructions with the company to collect it outside. Okay? Fine. I know that you got this. But the neighbor downstairs-who has always been a bit of a total nutter-decided that the bin was outside her window, and maybe it was a bomb. That's what I said: a bomb. So she rang the landlord, who rang me, and I 

couldn't stop laughing. I then had to tell everyone else on the ward what was so funny-since everyone was listening anyway. There was really nothing else to do, and I wasn't exactly quiet about it.

Now-two weeks ago I had another full bin, arranged for the collection, and asked the landlord's rep-called Sharon-to ring Florence (we all call her Big Flo: about the size of the late Cyril Smith but without a functioning brain) to tell her that another sharps bin would be out the next day-and please don't touch it, because it isn't a bomb. What do you think happened?

She didn't touch it. She and her carer stole it. This moron and her hired moron stole a full and locked sharps bin. They took it, it took two days for me to get it back-and that is because I blew a fuse, started emailing everyone who had the authority to actually do something to get it back, and finally called the police. Ringing the police did the trick. Sarah Green Fried, the coordinator (lazy bastard that she has always been) must have been told by her boss to handle it. She finally emailed me to say that they found the bin, and that it was all an honest misunderstanding. Seriously. Not only is Sarah a lazy idiot (another one who is the size of Cyril Smith because all she does is sit in her office and eat), but she really believed that I'm stupid enough to fall for "misunderstanding", rather than the truth: this was a deliberate and malicious act that could have caused-who knows what would have happened if children had found the bin, smashed it open, and discovered thirty used syringes and needles? Or a drug user, who would most likely think it was Christmas?

The outcome? Big Flo was told off by the council's antisocial behaviour team, and was informed that if it happened a second time, there would be repercussions that she would not like. There's a difference between some total asshole who enjoys causing trouble for the neighbors-and someone whose actions could endanger the lives of the public. Actions have consequences.

I'll know soon enough if history is going to repeat itself. The stolen sharps bin and a second full bin are out for delivery-today. That will be interesting, to say the least. Fingers crossed. But I spent two weeks trying to stop myself from thinking the worst case scenario. Whatever happens, none of this can be my fault. According to the police, the blame (or responsibility) lies with the thieves. Even though Big Flo is clearly missing her marbles (perhaps born without them. Who knows?), the parties who stole the bin will be the ones who get busted.

Maybe the next time I see her I should ask her if she likes prison food?

I'll keep you posted. Now it's time for a very strong coffee!!

Montezuma's Revenge

Eleven weeks and counting. Seriously. Counting. At least I'm not down to counting days, hours, minutes. Not yet, anyway. Eleven weeks ago today I was incarcerated into the Dementia Central ward for crazies. You know how badly that affected me (and my hearing, too). But-that did have a somewhat interesting conclusion.

The injections of  anticoagulants have had really nasty side effects; I'm told that I will have to live with those until the end of March, which will be six months from the first jab. By side effects I don't just mean nasty bruises to the injection sites, or headaches, or occasional nausea, or the terrible dizziness that's part of the process-or even severe weakness. It's been very hard to even get out of bed in the morning-and that just isn't like me at all. I mean what happens when we eat something that disagrees with us-or food poisoning-or stomach flu. I mean that what goes in one way has to eventually come out the other way. Sometimes this happens much faster than we ever imagined (usually when we're in public). It's the runs, people. My grandfather used to call it Montezuma's Revenge. No-I don't know why either. But it sounds more delicate than saying that someone's got a bad case of diarrhea. And that's another side effect of the blood thinners. But I was told last week (by an immunology registrar, not by hematology Nurse Ratched) that I will have to somehow find a way to live with all this until the end of March-and that it's better than dying, isn't it? Well-when he put it like that...

So that's why you haven't heard from me. I feel like all I do is complain. And, let's face it. Nobody likes a moaner. 

I've got good news, though. All of a sudden I'm feeling a bit better about living with anything. In June I went to see the neurologist (yet another team. I've got loads of them). I said that I'm forgetting things: names, places, appointments, etc. I was worried. So he ordered a brain scan. I can truthfully say that it won't be cancer, or gentamicin, or heart trouble, or blood clots that will carry me off. It'll be the radiation poisoning from all the scans that'll kill me.

So- I had the brain scan, and then I went along for nearly seven hours of memory tests. Two hours one day, five the next. One ten minute bathroom break. Nothing else. Good thing that I have good kidneys. I got back completely exhaused (and thirsty). But I never had any results and I wondered why. I had an appointment with the neurologist yesterday afternoon. 

Now, talk about depression and anxiety! I had an acquaintance who was diagnosed with dementia in May. She doesn't remember me now. And after the five day torture in what I call Dementia Central, I was becoming afraid that I would end up like them some day-even if they were all thirty years older than me, it still bothered me. I needn't have worried.

The consultant sat me down and told me that brain cells start dying off around the age of 30, so the brain does shrink. I said that nobody  wants a shrunken head-but he said that all of us start to show signs of aging, and it's better than the alternative (don't you love that expression). Then he told me that I do not have any signs of dementia, and probably won't develop any, either. He said that the doctor who tested me has many years of experience, and that I surprised him and the rest of his team by being very high functioning. He said that the testing team would like to do some tests to see just how highly functioning I am. Goody. More testing. I said that I want to get past the blood clots first. Apparently I impressed everyone. Now- I have never been really good at accepting compliments, but I was so very shocked that I just said thank you. He will be seeing me again after the anticoagulants are finished. 

What a shocker! I nearly skipped out of his office. So many things have gone so badly that I had very low expectations that anything was ever going to go right. I keep looking around to see what is going to go wrong next. Maybe that should be a new year's resolution: try to be much more positive and optimistic. Hmmm...would I be so much fun then? Doubt it.

That is my update for now. Christmas is only two weeks away, and if it stops raining I'll be able to go outside and view all the decorations. Some have always been terrific. Others have been so dire that the people who put them up should run and hide...

Keep your heads down, people are now shooting each other in London, too. Stay safe and I will write again soon. Maybe I'll get lucky and the blood clots will disappear. Meanwhile, it is most definitely coffee time. 

Dementia Central is in the rearview mirror

 And finally-it's been exactly six weeks since I was released from my enforced incarceration into the hospital-and on Dementia Central, no less. I'm so very lucky that I got out with my hearing, not to mention my sanity.

I've had a seriously nasty time since I got a reprieve from the three screaming women. I'm quite certain that they forgot all about me in less than an hour after I left. I didn't forget about them, though. They stayed with me for awhile. I've never had to deal with anyone with dementia before, and I think that any carers or family are incredibly heroic. I couldn't do it. Within a few hours of listening to the rants, the screaming, the swearing (some of that came from me, truthfully), and the woman across from me taking her poo and smearing it all over her face (someone should have told her that it isn't a face mask), I was ready to throttle all of them. I can only take kindness and empathy so far...

I was so thrilled to get out of there that the first thing I did when I got in the door was make a very strong coffee. Bliss. Then a shower, as if I could wash off the preceding five days of extreme torture. I contacted everyone just to say that I was still alive.

I did arrange for tests for dementia. All I saw for days before my "prison sentence" were ads for dementia, dementia was everywhere. It wasn't until I saw my GP that I discovered that it wasn't some insidious plot to tell me something I didn't want to know; it was Dementia Awareness Month, so there was advertising everywhere. Thank goodness.

I took some tests and made the momentous discovery that I don't have any form of dementia and that I've still got all my marbles-in the right place and functioning perfectly. Forgetting things is normal-unless you forget everything, in which case - go to the doctor. And my 45 year old friend complained that she suffers from senior moments. I had to correct her: they aren't senior moments, they're pre-senior moments. She's only 45, Her brain isn't going anywhere.

But-it all gets worse, and everything went to Hell. I've been self-injecting the blood thinners for six weeks, and I was told by someone over the phone-over the phone, would you believe! = that I need to continue on the anticoagulants for a minimum of three months-possibly six months. Apparently it takes at least three months for the blood clots in my lungs to dissolve and disappear. That is what is written-and, of course, what is written must be true. Except when it isn't. And their protocols are BS anyway. Who lets a patient self-inject anticoagulants without checking to see if the medicine is working, and how well it is working, and the possibility that I might be absolutely fine in three months, not six? But the nurse told me-very rudely, in fact-that nobody will do anything because they're adhering to the guidelines. I questioned that-and her rudeness-and called her Nurse Ratched. Lucky for me that she wasn't a fan of the film, wasn't it?

So I got to work. I started emailing. And if you've been with me for awhile, you know what happens when I start emailing.  I don't stop until I get a satisfactory answer. So I emailed the immunologist and told her that there is absolutely no cooperation from the haematology team, and that some very nasty nurse I call Nurse Ratched refused to let me speak to the haematologist. I said that thirteen and a half years ago some absolutely incompetent doctors told me that gentamicin was safe and that they would be "watching me". I reminded her that they did such a sterling job that they nearly killed me; instead of killing me, they crippled me. And I said that I wasn't going to allow that to happen again. She emailed back, and told me not to worry, that she was going to email the haematology consultant.

The short version (or, short-ish version) is that my immunologist will be watching and I will have a phone call from the haematologist in December (before Christmas). And, if necessary, the immunology team will order a CT scan to see exactly what's going on in my lungs. I did point out that if anyone finds gold or diamonds when they scan me-they can't have them. But they're more than welcome to the blood clots. Amen to that.

The biggest problem now is the challenge to walk and stay upright. Anticoagulants have side effects: headaches, severe weakness and exhaustion, and profound dizziness. As you know, I'm dizzy enough already. So that's been a challenge. Then, of course, and saving the worst for last, is the tendency to bruise. I gave myself two big bruises after injections, but I've been doing this for six weeks, and I did a better job than the nurses did in five days. They gave me some massive bruises. They must have been in a hurry. 

My legs are so bruised that I look like I've been kicked by a horse (I've never been kicked by a horse, but if I had, it would probably look like my legs look now). I also bump into things-especially with the added dizziness, so every once in awhile I'll turn around and bump into something that would normally not bother me-but it would bruise (and hurt).

I have to admit that I'm so lucky that I got to the doctor in time to be diagnosed with blood clots. Apparently, if I'd waited much longer it would have been too late. So I'm sitting here and wondering that if I was a cat, I'd have gone through at least seven of my nine lives. Perhaps even eight. 

One of my very close friends said that I'm just always so unlucky. Actually, that isn't true. I'm extremely lucky. Every time I've had a very close call-and there have been way to many of those to think about-I somehow managed to survive. How much longer is anyone's guess. When I can stop bumping into things long enough to just sit and think, I'll have to decide what I want to do when all the injections are over and I'm fighting fit again. Or should I say when I'm fit again? 

I'm gearing up for Thanksgiving. I certainly have a lot to be thankful for. Plus-close your eyes if you're vegetarian- there will be turkey. And stuffing. Sweet potatoes. Cranberry sauce (homemade, too). I even might splash out on a bit of wine. I've got loads at home, but it's so old it can probably be used as very expensive vinegar. But I'll write as soon as anything is happening. 

Why is it that when a man asserts himself and stands up and fights for himself, he is looked on as a hero, someone who is admired for his forcefulness-but when a woman stands up for herself, asserts herself, won't back down until she gets results, she's called a bitch? Huh. There's something for you to think about.

 

Groundhog Day in Purgatory - and a week in Dementia Central

 It's either Groundhog Day or I'm secretly like a hamster on a wheel. It's been that sort of month since I last wrote. I was thinking of what to say since last time-perhaps something different, rather than the same old thing-and then the fertilizer hit the fan.

It started with severe chest pain- and I started to worry that the ablation had failed, and that I would have to undergo a third one. Needless to say, I just kept my mouth shut and hoped that everything would start to ease. But I had severe chest pain on my right side-and unless my heart decided to take a stroll into another part of my body, it looked as if I was having a lung problem. I became very breathless; I could hardly walk ten steps before I had to stop and do some breathing. Stairs were a problem. Everything was a problem.

I had a consultation with the immunology consultant coming up, so I decided to wait and tell her what was going on. So much for Groundhog Day...and for the wheel...

I was told to go to have a chest X-ray. I did that, and I waited. And waited. And waited. I finally had the X-ray and was thrilled to get out of the hospital after a four hour wait. The next day I had my infusions. I was told just before they started that I had to return to the imaging department for a CT scan. Why? I asked. I was told that the scan had been ordered. So I went. Grudgingly. Again, a lengthy wait. And another cannula. And more bruising up my arm because my veins are difficult to cannulate. So I went through that-and another three hours later I was on my way back.

Friday arrived, and I was feeling very rough-so I struggled to do my prescribed walk, and had to rest. Talk about feeling old and frail! Then I received a phone call that changed everything. It was from one of the immunology doctors. The X-ray and the scan showed blood clots in my lungs. I was gobsmacked. Clots? Plural? I asked. Yes, he said. Lungs? Plural? Yes-again. He told me to get over to A&E as soon as I could and ask for the medical team. Apparently the medical team expected me. So I made sure that nothing was cooking, all the lights were off, and I was on my way back to the hospital.

The short version: once again I  had a cannula inserted in my arm. I've got so many huge bruises up my arm that you would think I was on drugs. I sat, and sat-I was told that the bloods had to come back before they decided what to do. From 6pm to 10pm, I sat like a lemon, watching people come in and out, watching while patients who were waiting (it was an emergency room, after all) started shouting. And then I was told that I was being admitted. You could have knocked me over, I was that shocked.

Off I went-by wheelchair (now I really felt decrepit) to the 10th floor. I was taken to a room with three other patients. I wasn't told  that all three had dementia. Did I ever find out quickly!!

The woman next to me had been there for weeks; they were unable to find a care home for her. No surprises there, she was screaming from the time I arrived to the time I left. Where she got the lung capacity-and how she didn't lose her voice-are still a mystery. She screame so loud they could probably hear her in Liverpool. And she spat. And kicked. and scratched, and swore. At top volume, all night and all day for the five days I was there. And the other two-well, across from the screamer was Jill, who shouted, cursed, swore at the nurses-and at me-and showed herself to be a racist by the things she said to-well, everyone. And the woman across from me shouted every time anyone came near her-which was often, because she was incontinent and had a habit of taking her feces and playing with them, rubbing her face with her poo. Delightful, don't you think?

All three were incontinent. All three screamed, shouted, swore, and needed constant changing. And I was stuck there for four days and nights. I had no sleep, and I was, truthfully, ready to throttle all of them. I kept complaining and asking to be moved, but I was told that there were no beds (I seriously doubt that), and that I should ignore all of them. 

That is why I started calling the room Dementia Central. I complained to my consultant when I left, but she couldn't do anything either. What moron takes a person who has no sign of dementia (a normal person), and isn't incontinent, and puts her in a room with a bunch of screaming, abusive crazies? 

At least I've still got my hearing-and my sanity. And blood clots in both lungs. I'm now injecting myself daily with anticoagulants to try to get rid of the blood clots-which are very dangerous. I get to have so many scans that it won't be cancer or blood clots that'll kill me. It'll be the radiation.

I was so shocked by the horrific experience that I told my GP that if I ever develop any form of dementia-Alzheimer's or any other, because there are several-I will fly over to Switzerland (assisted suicide is legal there) and go to Dignitas and that will be the end. I really, honestly, never want to end up like any of the three "roommates". I felt terribly sorry for all of them-but only for the first sleepless night. It got very wearing, very quickly.

If anyone is caring for someone with any form of dementia, you should get a medal.

Now I'm going to do what I started to do on Friday: laundry! Boring, but consider the alternative...

Mickey, Minnie, and the whole bloody extended family

And here I was, congratulating myself on refusing to be grumpy. Grumpy: no, pants, yes. We all need our pants. 

This positive change of heart nearly worked, too-until I nearly had a seizure when I saw a mouse run across the kitchen floor. I think that I shouted "shit!". And I figured that if there was one, there must be an entire family. So I started spraying clove oil everywhere. Clove oil, or so my neighbor (a mouse veteran) tells me, will put off mice. They don't like the smell of clove oil, or peppermint oil...

I tried to put down clove oil everywhere; all I succeeded in doing was nearly asphyxiate myself in the process. The smell of clove oil permeated the flat. To be less PC, the whole place stank of clove oil. I even smelled of cloves. Some people moved aside as I was coming up the road. Perhaps that's the secret of getting people to avoid crashing into me as they're tapping away on their phones-or are simply completely unconscious. Clove oil. Come Christmas, I will be in hiding.

Well. This is what preoccupied me since I last wrote. The weather wasn't great: rain and more rain, cooler then hotter, and we're supposed to expect very hot weather all next week. My attempts to stay upright were very so-so. When the barometric pressure changes, when it rains, when it starts to get dark-all these weather changes seriously affect my attempts at something resembling balance. But-I didn't fall over. I call that progress.

I finally had to give up trying to be kind and get the mice to go plague someone else. I used clove oil. I then used peppermint oil: nicer, but then I smelled like a candy cane. So did the flat. I felt sick from all the smells, and the mice-the last time I looked, they were line dancing. So I called in the big guns: mouse poison pellets. Will they work? I bloody hope so. Otherwise I'll have to sleep in the park.

As for Mickey and Minnie-and the rest of their family-I said this morning as I put down more poison (the little gannets scoffed everything I put down last night), they have a choice: leave or die. If necessary, I'll have to call the mouse patrol (exterminators). 

I'm not grumpy, though. I'm too busy to avoid asphyxiation from clove oil... 

Grumpy Pants: A new and timely lifestyle

 I don't usually call myself names-unless they're things like wonderful, and fabulous, of course. During lockdown I decided that everyone would benefit from being as kind to themselves as possible, given that we might all be dead tomorrow anyway. Let's all give ourselves compliments - if we don't, who else will?

But-this morning I looked in the mirror and saw Grumpy Pants looking back at me. And I went into Marks and Spencer for some food, and spent some time looking (carefully, obviously, because who wants to have the crap beaten out of them because some moron says they're staring) at other shoppers. It was an eye-opener, that is for sure.

If I'm Grumpy, then I didn't have to look far for the other six dwarfs. They were coming past me two by two. 

During the pandemic, people were uncharacteristically polite. Some were even helpful. And now, three and a half (approximately) years later, they're all back to their nasty, rude, obnoxious, stupid selves. They don't look where they're going, they expect someone on crutches to sprint out of their way, and most of them are just generally a huge pain in the ass.

So Grumpy is justifiable in my view. That should be the number one baby's name this year. Or any year. I admit to sometimes wondering what would happen if some nitwit on a bike rode up onto the pavement (which they do regularly), no helmets, no lights on their bikes, no license plates (handy so that someone could identify the body) and some elderly bloke on one of those four wheelers rode into him and tossed him in front of a moving bus... I'm waiting for that to happen, just so I could have a good laugh. 

Grumpy is good. Irascible might be better...

Crashing and Burning: Only the Strong Survive

 I'll say one thing about life: it's never boring. Even when I think it's boring, something invariably happens to liven things up. 

There I was, with my lovely new laptop, ready to have a go-with no instructions, either-so-either brave or foolhardy. But it didn't matter, because I collected it, struggled to get it home without doing my back in (or falling over)-and bang! Wallop! It was flu. Not Covid. Flu. Not even something exciting, just garden variety flu. Struck down by the bloody flu. Grrr...

So that's where I've been since I last wrote. All around me, people were dropping like flies. Every time I turned on the newsfeed, every time I listened to the news, it was either one tragedy or another or-someone well known reeled over and croaked. And some of them were young (ish), too.

I've been in a real crap mood for the last few days: irascible, short-tempered, like a snapping turtle. Last night I figured out the problem: scan back thirteen years to the same three days, and you'll find that the incompetent morons at the Royal London immunology department vey nearly killed me. Gentamicin. The dirtiest word in my vocabulary (not that I know many, I just keep repeating them over and over again).

I do find it difficult to let go of that whole situation and the resulting injustice of it all. I know that I have to let go in order to move on-but on days when it's raining, or the barometric pressure outside changes-and this is London, so the weather never stays the same for long-I stagger all over the place. The answer to will I either get a ground floor apartment or someone to help me-absolutely not. Not yet, anyway. I just refuse to give up. 

I said that I want to have a t-shirt made-a copy of the one I saw a few weeks ago. It said:

I do not spew profanity. I enunciate perfectly. I'm a fucking lady. 

That was so funny that I sent it to one of my friends-the one who would find it funny. I might have one made for her for Christmas-if I can find someone who will make the t-shirt for me. I had a brilliant store years ago, they would put just about anything on a t-shirt. But-they're in New York. A long commute.

So that brings us up to date-for now, anyway. My hope is that I will be able to stay healthy from now on. I got the look from the clinic when I went to have my infusions: it said: where is your mask??

Meanwhile, I'm going to do my best to keep my mouth shut and stay out of trouble. We all know just how long that's going to last!

Crashing and Burning: The rise, fall and rise again of yours truly

 I'm dragging myself around and feeling like I've been dragged through a hedge backwards. It's been like that since I last wrote. 

You would hope that all the consultants would see me on the same day-in the same week-but no, that would be an ideal world. An ideal world would be not having to see any consultants at any time-ever. But I am getting closer. I've been informed that the vestibular condition is quite permanent; the dizziness is chronic, I should make sure that someone is caring for me just in case I catapult myself down the stairs again. As if!

I'm relatively discharged from anything to do with neuro-otology. The consultant feels that there is nothing more that can be done. Such optimism is so encouraging. I've got an appointment with him next May. So I've got some time to prove that he's very, very mistaken. Unless I'm living in cloud cuckoo land, I've got a few months to increase the amount and duration of my eye exercises. I also really need to have a positive attitude to prove everyone associated with vestibular medicine that I can heal myself, and that I'm not giving up. The fat lady hasn't sung yet.

This week I went along to another hospital to have the loop recorder removed from my chest. The loop recorder was inserted nearly four years ago; it isn't a pacemaker, but merely a heart beat monitor. Every time I had a tachycardia attack it measured the number of heartbeats and the length of the attack. It was incredibly valuable; I had the ablation-the first one that failed-because the attacks were dangerously long, and increasingly frequent. Same again for the second ablation. But the battery decided to die a few months ago, and the thing was sitting in my chest, deceased (thank goodness it was deceased, and I'm not!). So I made enough noise to have it removed. 

That was a laugh. The person who removed it was a nurse, being trained in loop recorder removal, and she kept losing the part that needed to be pulled in order to remove the whole thing. She kept digging. I finally asked whether she was used to doing these procedures. All she did was glare. So I decided that discretion being the better part of valor meant: shut up.

That was on Wednesday. On Thursday morning I did a route march into the West End-and I bought a new laptop. My old one was twelve years old, was brilliant, and I used it every day. But it expired just before lockdown. So I had to use my phone-and then the library's computers. The problem with going to the library is that a lot of people are thinking the same thing, so I have to get there when they open. Another problem is that-and I learned this from actually seeing it for myself, which was disgusting-people will wipe their noses with their hands and then use the keyboard. Gross. Made me wonder what else they wiped with their hands before (and, in some cases, during) using the keyboard. I always used an antibacterial wipe before I used the computer. Ewww... but I finally went to get my own. Hooray-that's all I have to say.

Actually, it isn't all I have to say-because I now have to figure out how to use it! It isn't like my old one. This one requires double-tapping. Double-tapping!! What????

You see where I said rise again. I now have to use the little grey cells and sit patiently-and we all know that I was born without patience-to work out what is supposed to go where. I have to admit that sitting and getting used to a brand new computer that doesn't behave the way my old one did-fourteen years ago!!-is going to be a challenge. I've always been up for a challenge. Now I've got several. 

I'll let you know how it goes. It's possible that it's going to drive me to drink...

Fight Club...Fight Week...Fight Life

 Now is when I really needed my suit of armor, shield and sword. Maybe a very large hammer. Last week I went into battle-unarmed except for my strong and sometimes very blunt tongue. And did it work? Hell, no, I'm still in combat. I seem to be always in combat.

A week ago (Monday) I decided to cancel an order for a sofabed from a store called John Lewis. If you live here (my sympathies) and shop here, You'll know the store. You'll also know that the employees pride themselves on good service, good merchandise, etc, etc. Everybody wants to be upmarket. Except- they aren't.

I cancelled the order on the Monday, and that started a ridiculous amount of time trying to get a refund. I realized that, when it comes to John Lewis, the left hand doesn't know (or care) what the right hand is doing. Every day (including infusion day) I was on the phone, chasing customer service for a refund (nearly £800, so I wasn't going to let it go). Every day I was given a different story-and it was a load of BS, because all they had to do was issue a refund.

On Monday it will be an incredible two weeks since this fight began. I've been in combat mode for nearly two weeks, and JL refuses to issue a refund. And there is no excuse that holds up. I did everything right (I know. I checked. You know by now how much I believe in doing my due diligence). The only thing for me to do is to present myself in the Oxford Street store and refuse to leave until the idiots involved issue a refund. And I told the last person I spoke to yesterday that if I have to do a day trip to John Lewis, I will be very loud-and I will call the tabloids for some backup. So let's see what happens. I'll let you know.

What I find interesting is the fact that people in this country are very quick to take advantage of older people (especially women), and they see someone who is on an elbow crutch and clearly has a mobility challenge- and they will take full advantage of that person. I thought, after so many years, that this only happens here. The truth is that it happens everywhere. 

So I was on strike on Independence Day, and I hope that everyone celebrated! I contacted everyone at home to wish them a happy 4th-as I always do-but I felt like I missed something this year. I did: fireworks! Oh, dear-I'm out of fireworks. July 4th just doesn't seem the same. So in November-when fireworks are sold to celebrate Guy Fawkes Day-I'll just replenish my stock.

Every year-up until the pandemic hit us all- I went with a small group of friends to the nearby park, found an open space (so we wouldn't set the place on fire), and set off fireworks. People actually enjoyed it-and we made sure that we cleaned up quickly and left before we were caught (fireworks on any other day but November 5th are illegal and someone could get arrested. Murderers get off-but anyone celebrating July 4th-well, that's a terrible crime),

So we're now up to date, and I will keep you updated on the John Lewis combat story. Always stick up for yourselves. Always. It's pretty likely that nobody else will.

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!