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!!