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.