Tuesday 2 April 2024

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...





Friday 26 January 2024

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!!