Tuesday, 20 August 2013

Some you win, and some you don't-obstinacy is a good thing!!

I was moved out of the room yesterday-but I was moved just across the hall, same private ward. It's a very small, dark room-and things need to be fixed (lights not working, and stuff like that)-but it comes with a small bathroom, and that is the important thing.

A few nurses are walking around with their noses so far in the air, I am surprised they haven't fallen over and knocked themselves unconscious. But I got what I wanted (and needed): a clean, private room that will be safe enough after surgery this afternoon, and I can probably keep the room until I go home.

It pays to be obstinate. It works to be persistent, and not allow yourself to be bullied or intimidated by anyone or anything!! Personally, if members of the staff are rude (they are, very) I don't give a rat's patootie. I'm here for the rest of my stay, courtesy of the NHS. It's about time I got something out of them!!!

I saw Val last night, and Mr. Skinner about an hour ago. I'm still not sure what he is going to do-but I did say that I don't want to go through another operation like this in my lifetime-so when I awaken in recovery later, I will know if he heard me or not. This is the NHS; unless you go private, you don't even know who is doing the surgery. I did ask him if he will do it himself, and he said he would...and, after the gentamicin incident three years ago, I really have trouble trusting anyone in the NHS.

I will be unconscious. For all I know, I could be operated on by a chimpanzee.

I am learning a lot about myself, what I will tolerate and what I won't tolerate-and the latter list is much longer than the former!! I'm not sure if I have age and experience to thank-or cancer-or all three. But I see myself as becoming far more formidable, and I've had enough of  taking crap from people. You have to fight for what you know is right...sometimes you succeed, and sometimes you don't - but at least you make the effort.

When they are rude to me here-I just think to myself: aren't you a total ***hole!!! And I smile. Because I won.

Time to get ready for - whatever. I have an arrow drawn on my leg; I suppose they need to remember which one they are operating on!!

Monday, 19 August 2013

Never underestimate the value part 2 (or maybe, part 3)I

Sam just didn't get it. I reminded her that I am the one who is at risk of infection from other people-and that it is not the other way around. But I could see that any logical argument was useless. So- I put in a call to Val Taylor.

Val is Mr. Skinner's anaesthetist. I rang the office and left a message asking that she stop in to see me before going home-if it was possible. Twenty minutes later, one of the nasty nurses came rushing in, demanding to know if I was in pain. The message the ward got was that I had called Val because I was in pain, and the nurse was extremely hostile, because she said that I should have rung the buzzer for medication if I was in pain. I said I hadn't rung to speak with Val for any problems with pain, and that the ward got it wrong. I wanted to see Val for something else. What? she demanded not that it was her business- so I said I'm thinking of cancelling surgery. And Sam came back-and she was furious. We've worked so hard on getting all this done, blah, blah, blah. She kept saying not to worry about it, and left. Easy for her to say don't worry. So I waited for Val.

Val came to see me at 5:30. I told her everything: the attitudes, the nastiness, even the crap service. She said I should be treated the same as everyone else, but reminded me that on the private ward I was going to get that kind of attitude-and asked if food was important. I said it wasn't-but wasn't it interesting the way there were two types of service: one for the paying customers, one for the NHS customers. We had a laugh about that-then got onto the real subject: the room.

I told her that the staff keep telling me that I will be moved out, that I shouldn't be in a private ward. And she excused herself, and said she would be back in a minute. About ten minutes later, Val returned. She had written in my notes-in big letters, she said-that I am not to be moved out of this room before surgery on Tuesday, and if anyone tried to move me, there would be no surgery. Val went on to say that she had tried to contact the administrators, but everyone had gone for the weekend. So-she emailed them, and demanded an answer on Monday (today).

She told them that she wanted me to remain in this room in this ward until I am discharged from the hospital next week. She then went on to say that if I go on a ward and people get pseudomonas, or if I contract an infection in the new knee, the hospital would be in serious legal trouble.

Val is the first one who has been actually in my corner; I could have hugged her. So I said thanks, and told her how much I appreciated her fighting for me, and she said that she would let me know what happens. Then we talked about her daughter, who wants to move to an area of London which is familiar to me, and she left at around 6:30. And I felt that maybe, maybe something would finally work in my favor. Finally.

Saturday I spent six hours in the Intensive Care Unit; I needed to have a whacking big dose of immunoglobulin (intravenously), and I had to go there to have it done. Part of me was afraid they would sell this room while I was gone!! But I remembered what Val said, and I was okay.

I said the dongle doesn't work-and that is why I have been offline for so long. True-but I discovered yesterday (I asked one of the friendly nurses-probably friendly because she was an agency nurse) that there is free internet access for the private patients. Hallelujah!! I may get lousy food, nasty people-but I have a private room and a private bathroom (for now, at least)-and free internet service.

Silver lining!

Mr. Skinner didn't come in this morning - I'm not a private patient, so he isn't obliged to see me until the morning of the surgery: tomorrow. But who did come in? The registrar, Jake-and Sam. We spoke a little about the surgery itself, which will happen around 3pm. Then the two people were going to leave-and Jake asked me if I had any questions.

Who am I? I'm a pushy New Yorker, that is who I am!! I have lived here for more than half my life, but once a New Yorker, always a New Yorker. So I said-about the room...And I pushed it. And Sam, bless her (the hubris of youth, I guess) said not to worry. So I snapped don't tell me not to worry. Jake said he heard something about Val going to speak with people, but he said he didn't really want to become involved (excuse me?? Aren't you one of my doctors???).

I stood my ground, and Jake finally said that he would speak with Mr. Skinner and one of them will tell me tomorrow what is going on.

Then I said: I will not go into surgery without knowing exactly where I am going to be when I get out of Intensive Care on Wednesday morning. Don't worry isn't good enough. Don't worry, trust us, blah, blah, blah.

I said-and forcefully-that unless I know where I am going on Wednesday when I return to the ward-and unless I have everyone's assurances (that is, the people in charge), I will cancel surgery.

I told Jake outright that I am not risking my life and my health so the hospital can make money on this room. You don't want to tell me where, and give me the details? Then I am going home.,

And that is non-negotiable.

Fight for your rights. Nobody else will!!

I will let you know what happens tomorrow.



Never underestimate the value of fighting for your rights-whatever it takes!

It pays to be pushy. It pays to fight for your rights-when it comes to your health, your life, you just have to fight. I suppose you also need to know when you won't win, and when to walk away. This time, I didn't walk away.

On Friday, I wanted to go outside the ward and practice using my crutches. I know I need to keep walking-not only to strengthen my legs for the operation (which is tomorrow. Yikes!!!!), but because neuroplasticity only works on the balance if I keep walking and challenge my brain to make those all-important neural pathways. So I walk. Or-I did. A very nasty nurse told me that I was banned from leaving my room.

What?? I said that I had been walking outside the hospital when I was on the other (Mackinnon) ward. So what was the problem? She said that I am an NHS patient, and the only reason I was moved to the private Newman ward was because it was unsafe for me to be out of the room. So back to the room I went-fuming. And I said that was ridiculous-I also said there is no need to be so nasty.

Then-a nurse came in and said I would probably be moved to another ward after the surgery, if not before. And I went ballistic. This was where the fun really started. I will keep it brief (ish).

I went back and forth with the junior doctor-Sam-who is, I suppose, the equivalent of an intern. The registrar had gone home, having torn the ligaments in his ankle by running and falling over (obviously I am not the only klutz in the neighbourhood!). Sam finally told me that she had spoken with the bed manager, and he told her that private patients came first, and that if a private patient came  in and needed the room, I would have to return to a normal (NHS) ward.Hah!

I said -somewhat sarcastically-that I understand that the hospital is only interested in money, but my concern is my life and my physical safety. Sam said-somewhat nonchalantly-that even if I had to return to another ward, the bathroom would be clean. I said-like the MacKinnon ward was clean? Sam is very impatient and somewhat fraught-she said I would be okay, then left the room.

I stewed over this for about half an hour, then rang the nurse and told her I wanted her to page Sam. She asked why. I said I am considering cancelling the surgery. Half an hour later, Sam stormed into the room. She proceeded to inform me that everyone had worked very hard to organize the rooms, the surgery, everything. She said I would be okay, even if they had to move me. I repeated-several times-that my health is too important for me to take any risks. Again, back and forth, and she finally snapped that she was being bleeped constantly and that she had many other patients to see. She repeated that if I had to leave the room, I would be fine. She then said that doctors are not the most powerful people in the hospital; administrators have all the power. Then she left.

What did I do next? And here come the doctors-so I will have to continue this shortly.

Sunday, 18 August 2013

If it ain't broke, don't fix it-and if it is...tough

I have been among the missing-and silent!-for two weeks. Bummer. I wanted to write, but got to the hospital and discovered that the T Mobile dongle doesn't work. So I will be returning it when I get home-as soon as I can walk, that is!!

Where am I? In the hospital-where else? After the twisted pervert park incident, I had to spend the rest of the week getting ready to go into the RNOH (Royal National Orthopaedic Hospital) on the Friday. My friend was due to come down on Thursday, so I didn't have a lot of time. I found myself rushing around like the proverbial blue assed fly-and still didn't accomplish anything, really. This means I finally learned the cost of procrastination.

I did say once that I am the procrastination queen...and, after all these years of panic, anxiety and stress, I finally am beginning to realize how much that has cost me. Between cancer (serious) and the knee (major, but just hideously painful - with a long recovery period), I've had the golden opportunity to reassess my life - and I don't really like what I see. So...when I get out of the hospital and I've recovered enough, I will be an ex-procrastinator!! I am determined; I need to dump all that stress.

Ah, stress...there is nothing like it. I came into the hospital on Friday, and had to sit and wait in the admissions lounge for five and a half hours before the room was ready. Apparently the current occupant wanted to have lunch and a shower before she left! That was, indeed, an omen: a sign of things to come. By the time I reached the ward, I was tired and grumpy-and discovered later that nobody in admissions (regardless of my request) had told my team I was there. They said they'd informed them-but they hadn't. So-no PICC line until Monday. And that was really, really annoying.

What was worse was the fact that, although I had a very small side room, there was no bathroom attached to it. I had to share. So, I went into action: I complained. Vigorously. And loudly. And I kept complaining until the nurses assigned a small toilet/shower room (on Monday, finally). A sign was put on the door, telling everyone that the room was only for room 14, and that for health and safety reasons, nobody else should use it. Not only did everyone carry on and use it, some people left little presents on the floor just to let everyone know they were using it! Nice. They also missed the bowl. So I had to watch where I stepped when I went in, and I went in armed with alcohol wipes.

The whole admission was a total disaster, in my view. I had to explain to every nurse and every nursing shift-and to many doctors who came into the room (I was a curiosity by this time), about CVID: what it stood for, that it is genetic, that I was born with defective genes, that I am not contagious, but everyone else is - especially anyone who is sick, even with the common cold.

I spent so much time talking medical history and CVID, I wish I'd just made a recording of it!! But I didn't really mind: 1 out of every 50,000 (20 out of every million) people is born with the condition, so it is reasonably rare. I even had to correct one of the baby doctors; she called it a disease, I said it is not a disease, but a hereditary condition. I made a lot of friends in the first week (not a bit sarcastic, am I? LOL).

I was poked, and prodded and irradiated, and on Wednesday afternoon, a nurse came in and said I was going to be moved into a private room-that was the rumor, anyway. So I packed. I was ready. Then at around 5:30, it was official-or so I thought. I was moving to the private patients unit. So I waited. And waited. And waited. And I kept pestering the staff to find out what was going on: nobody knew anything. No surprise there!! I felt horribly disappointed, distressed, and depressed. The thought of staying where I was, the risk of infection- too much.

Thursday morning a nurse came in and told me I was to be moved into the private unit-hooray!! But I didn't want to feel the way I'd felt the night before, so I just thought I would wait and see.

Bottom line? I moved into one of the two private patient wards, just down the corridor from the old NHS one. That was around 11:00. It is a lovely room (for a hospital, that is) with a private bathroom. I immediately relaxed; I felt safe for the first time in a week. And here is where it gets interesting.

On Thursday, the staff couldn't do enough for me. The catering staff came in the room with a pot of tea (a china pot), nice cups, nice cutlery, nicely presented. Then lunch arrived, and, again, it was nicely presented-and the food wasn't bad. I was treated as if I was one of the patients whose bills are paid by their insurance company (most private patients have private insurance; only a few have the big bucks needed to self-finance these rooms). Then someone let the staff know I was NHS-and everything changed.

There is a huge divide between the service provided to private patients and NHS patients. Catering staff-and cleaning staff-who are unskilled labor and probably earning no more than minimum wage, practically bow and curtsy to a private patient (just in case someone has the money to be self-financing), but NHS patients are treated like dirt. And that is the sad but absolute truth. And I am not dreaming this, I have seen it firsthand-on the receiving end.

I was told I had to choose meals from the NHS menu. Even though they are cooked in the ward kitchen, the quality and presentation deteriorated markedly-as did the service. I was served last, and always with a smirk and a bit of hostility: I am, after all, an NHS patient. So, yesterday, when a server was particularly rude, I said to him: "I might be a lowly, worthless NHS patient, but at least I have manners". He didn't know what to say, so he left the room.

And there is more. In fact, it gets both worse - and better. And my consultant, Mr. Skinner, is about to come onto the ward, so I will stop for the moment and get back to this later; perhaps I will have even better (or worse!) news for you by then.

I will preface all the rest by saying: it pays to fight for your rights. And I do mean fight. And that is exactly what I did!!

More to come.

Monday, 5 August 2013

From strange to weird to downright sick, perverted and dangerous

What a week!! Thursday was just about the hottest day of the year so far-and, at the risk of sounding like I have the English disease of constantly moaning about the weather, it was a scorcher! It was in the 90s, and you could have stuck a skewer through me, put me over the road (who needed a fire??), basted me, kept turning until I was done, put an apple in my mouth-and got stuck in. Yum-if you are that way inclined (I'm not, I'm glad to say!!). You get the idea.

Thursday marked ten weeks since my surgery-and I look back and I admit to being happy and relieved that it is now and not ten weeks ago. I would not want to undergo that level of pain (and uncertainty)again. Ever. So I marked the occasion by going to see a psychic. That is the strange and weird part-and I will get back to it in a little bit. There are still more days to cover!!

On Friday afternoon, I went to the hospital to pick up my prostheses, which had just arrived. I call them my "bra stuffers"-because that is exactly what they are. I needed to buy two mastectomy bras so it looks like I actually have a normal chest (mastectomy bras have little pockets for the prostheses so they don't fall out when you bend over. That would be embarrassing!!). So that was an okay day. Once I get over the nasty side effects of the Tamoxifen (hopefully soon), I will have more energy and fewer bouts of hot flushes-so days are okay, but not great. Still, it beats having cancer!!

And this brings us to yesterday (I will get back to Thursday, but not yet. This you need to hear).

Yesterday I decided to go to the Unitarian Church-I will not be able to go for awhile, since I am in the hospital next week, and I will be on crutches for awhile. So I thought I would go and say hello (and goodbye) to people. And-I went a bit early so I could stop for a coffee before the service.

It was nice and quiet, and only 9:30 in the morning, so I thought I would take my coffee into Highbury Park, which was on my way to church. I sat on a bench, minding my own business and enjoying the peace and quiet-and I'll bet you can guess what happened next: sick, perverted and downright dangerous. If you guessed that, right you are-and I didn't think of it at the time, or I would never have sat on my own in the park in such a dodgy area.

I was in mid-swallow, as it were, and this black man rolled up on his bike, stopped in front of me, looked me over, and asked directions to the underground station. I gave him the directions, and he started telling me that I looked "nice", and that he likes older women-especially older white women (his words). How old are you? he asked. I replied it's none of your business. Then he started. Are you married? Yes, I said-now leave me alone, I'm not interested.

He then proceeded to expose himself, telling me that he could make me very satisfied. I told him he's disgusting, and said to put it away, I didn't want him. He kept on, and waved it my way...so I got up and started to leave. I wanted to tell him to f*** off, and make fun of him-but I realized that there was nobody around, I was on a walking stick, this man (maybe in his early 30s, whatever-old enough to know better) could knock me to the ground and I was too fragile to defend myself...and, add to that, the guy was most definitely a sick pervert and potentially dangerous. Definitely a perv and nutter, and I wanted to escape as quickly as I could. So I used my stick and strode purposefully to the exit, alert to the fact that he could come up behind me. He kept calling for me to come back, and kept asking my name. I just kept going-and in about two minutes I was crossing the road. I only looked back when a bus rolled past me and I was about 100 yards from the entrance to the park. He wasn't to be found-thankfully.

That could have been a really dangerous encounter. He could have been on drugs, could have been psychotic-he could have had friends with him, and I would have had no chance. I just withered at him, stood up and walked away-the best thing I could have done, in my view. Actually, the best thing I could have done would have been to drink my coffee while walking down the road and avoiding the solitary park altogether. I won't make that mistake again-but then, I won't be able to get to church for at least six weeks (the next three will be spent in the hospital. Hopefully there won't be pervs in there, too!!!

I didn't say anything to anyone at church about what happened. There was no point, after all. So I hope this week gets better; what a way to start a week!!!!

And that brings me back to Thursday and the psychic. I used to date a man who was a medium-or so he said. He was just an idiot. Not a psychic, or a medium: an idiot. Obviously that was a glitch in my relationship resume, and it didn't last long. But he did introduce me to some psychics-most of whom got nothing right at all. So when it came to seeing this man, I was doubtful-but I went anyway, just to see if he got anything at all. Surprisingly, he did.

Bill said he had my mother there... a few people who didn't ring any bells at all, got my love for animals...it was interesting, because there were some hits among the misses-but a lot of misses. He was telling me I love gardening (eeek-not in a million years), and that I like to sing (that part is true), and that I love hymns (whaaat??) and have a fascination for nuns (pardon??). But he did get parts of my personality spot on- and picked up on the cancer (I hadn't told him) and that I will be having more surgery (I hadn't told him that, either). It was an interesting experience-especially when he asked if my cousin (I actually gave his name and asked Bill if he picked up on anything) had died of very bad chest or heart pain. My cousin was a soldier who died by being shot in the chest-and there was no way he would have known that, so I found that was - shall we say, different?

I'm glad I decided to go to see Bill-and I might go again at some point, to see what else he picks up. He also said I should be doing what he's doing...altogether a somewhat rewarding visit, I think!!

And this week I need to get ready to go into the hospital, and to finish getting my place ready for my friend's arrival on Thursday. I'm nervous. I'm apprehensive. I got over one nasty surgery only to have another-although this one is elective, and the last one came as a big surprise!! My computer will be coming with me, so I will be blogging while I'm there (not like there will be anything else to do until they operate), and hopefully I won't be bothered by another set of nutters. I've seen off enough nutters!

I suppose it's asking too much to just have a quiet life!!