Nope, not dead yet. In spite of the best efforts of the medical community and the NHS, I am still very much alive!! Clearly, I am just very hard to kill...
I know I haven't been online for two and a bit weeks-and they have been two very difficult weeks, too. After my last post, I had to start physiotherapy at the London branch of the RNOH-at Bolsover Street, so it is much closer to the house. And that went well, although it was difficult and painful. My physio, Ollie, showed me how to use the crutches properly. He said that the people at Stanmore gave me bad information-well, no surprises there, as we now know!!
But-my balance and my eyesight have really deteriorated, and I threw a wobbler last week and nearly ended up under a bus. That was close; someone I knew grabbed me just before I fell. Imagine going through these awful five months, only to be splattered all over the road and have to be scraped up by a spatula. And it wasn't even an upmarket bus, either!!
Ollie said to do my exercises-and I have been doing those, since I don't want to be limping for the rest of my life! He also said I should rest as much as possible, since I need to recover from two operations, not just one. Good point.
And-you will like this (but not a lot): I have to gain weight. Yes, I am just over 100 pounds now-I think I haven't weighed this little since I was 12-but I have been given orders by-well, just about everyone.
On Monday I saw both Margaret (GP) and Coletta, the dietician. They both said that my BMI is far too low, and that is why I am too exhausted to do anything. I asked if I am in danger of going down the plughole along with the bathwater-bad joke, I know, and they thought so, too. So I have to eat more, eat more often, and all that stuff. My friend NJ said I shouldn't expect any sympathy, because most people want to lose weight, not gain it!
Margaret also said that the lighter I am, the greater the chance of developing osteoporosis. That made me very nervous. Imagine - I have a choice. I can stay very thin but have a huge risk of sneezing and breaking a hip-or I can gain a few pounds...hmmm, I need to think about this a bit!
While I am thinking, I am going to risk life and limbs and get out the old crutches and go up the road to Starbucks for a nice big cappuccino. Lots of calories-and I get to people watch, so if I find anything funny (and I usually do), I will report back.
I said I was back last time, and that was a bit premature. But I am really and truly back-even if I do look like a bag of bones!! I might as well enjoy it for as long as it lasts....
Friday, 27 September 2013
Thursday, 12 September 2013
The Good, the Bad, and the bingo wing
Three weeks ago - on Tuesday - I had the surgery. My, doesn't time fly!! And it has been a pretty rough time. In fact, I kept asking myself why I was so nuts as to have such a painful operation so soon after the mastectomy. I just wanted the whole thing to be over, so I don't have to look forward to any surgery in the near future. I am done with surgery!!
The good thing is that the pain level has decreased. I still have pain, but it isn't so excruciating that I sit and cry about it. It's bearable now-and when I do too much walking, or moving around, and the knee swells up, I just rest it and know that it will be fine-eventually.
With the good inevitably seems to come the bad: on Tuesday I saw my neurologist, Dr. Turner (aka Dr. Dimples). He was very late-but all NHS doctors seem to always be late!! We spoke about the knee thing (I am on crutches. We couldn't exactly avoid talking about it!), and the cancer, and he said that it has been a very bad-and stressful- year. No, really? He also said that I probably have made as much progress as I am going to make, given that it has been three years since the initial gentamicin poisoning. I asked him about the setbacks of the past few months-and he advised me to go back to the very first exercises, since my nystagmus has returned and my eyes are moving around of their own accord. He said to just keep doing as much as I can to try to return to where I was before disaster struck earlier in the year. And he will see me in twelve months, at which time he will have to discharge me from the clinic, since-he said-he can't keep me on the books indefinitely. He wants to see if I have made any progress in the next year.
I was so discouraged, I went home and went to bed early. I really didn't feel like talking to anyone, or going online-I know it's been over a week, but severe pain and sleep deprivation kept me from doing much-but this setback was really very painful.
So I thought about everything very seriously yesterday. I thought about the surgeries, the illnesses, the setbacks to my balance and vision-and I decided that it is possible that Dr. Dimples is mistaken. I return to everything I have read about neuroplasticity, new neural pathways, the fact that we just don't have enough information about the brain (yet) to make that kind of hard and fast judgment. So I refuse to quit. I have a year to prove Dimples wrong: I have a year to get back to that all important 80%-more, in fact, if I can do it. It just means that I need to stay healthy. No falling down concrete steps and landing knee first!! I have a replaced kneecap now, and I don't want to have to have a brand new knee to go with it. And-there is no reason I can't stay out of hospitals, providing I do everything I can to keep myself healthy. I need to get back to that optimistic mindset-the one where I refuse to give up, because I know I can do it. I just need to do the work-and I have become pretty lazy, I can tell you!!
And then there are those bingo wings. I have to mention those, because they are the scourge of women everywhere-right up there with fat thighs, hips and backside, muffin tops, bra fat, and, of course, the awful turkey neck!! Is this relevant? Of course it is.
When I first got the crutches I said to a couple of nurses (that was when they were still speaking to me) that at least I would be able to get rid of my bingo wings. They laughed and said that the muscles were the wrong ones. Er...well, yes and no. Can I explain? Well, I thought you would never ask.
Bingo wings are the fatty areas between the armpit and the elbow, and just about every woman I know has them. Some are so large that if someone raised both arms together, she would look like a huge bat. And imagine suddenly raising your arm, having a wing fly out and give some poor innocent bystander a black eye. Try explaining that to the paramedics (or police). Errant bingo wing causes facial damage...whatever. So we all cover up, wearing long sleeves to ensure this never happens-and because it looks terrible. I used to see women at the gym, doing tricep dips until their arms nearly dropped off-and when they were done, they still had those bingo wings. And probably something they ruptured, too.
Why, you ask, is this relevant? Duh?? Because I have found a cure,that's why. It isn't surgery (are there things like bingo wing lifts? Probably). Or hours of daily tricep exercises. Or special creams (rip off!!), or pounding or pummeling. The cure is... crutches. That is what I said: crutches. You read it first here, and you got it for free. How good is that??
I have been on crutches for three weeks, and my arms are developing biceps that are finally bigger than a sparrow's kneecaps...make that a sparrow's elbows, kneecaps are a sore point with me (literally!). But all the shlepping around with crutches, and trying to get it the way the physiotherapists told me (crutches down, then bad leg, then good leg, then crutches, etc), and I have noticed that my bingo wings are shrinking. They were never bat-sized, but they are shrinking. And that is due to the crutches, because I'm not doing anything else.
So there you are. Get some crutches-not the old type that sit in your armpit, but the ones with the plastic thingy (a technical term if there ever was one) that goes around the elbow, keeping the crutches from dropping. And walk. A lot. And lift yourself on the crutches. A lot. And say goodbye to bingo wings and long sleeves.
Let me know how it goes. When those wings are gone, you can take me to lunch. Huh. I should write a book, I would make millions.
And by the way: I'm back....
The good thing is that the pain level has decreased. I still have pain, but it isn't so excruciating that I sit and cry about it. It's bearable now-and when I do too much walking, or moving around, and the knee swells up, I just rest it and know that it will be fine-eventually.
With the good inevitably seems to come the bad: on Tuesday I saw my neurologist, Dr. Turner (aka Dr. Dimples). He was very late-but all NHS doctors seem to always be late!! We spoke about the knee thing (I am on crutches. We couldn't exactly avoid talking about it!), and the cancer, and he said that it has been a very bad-and stressful- year. No, really? He also said that I probably have made as much progress as I am going to make, given that it has been three years since the initial gentamicin poisoning. I asked him about the setbacks of the past few months-and he advised me to go back to the very first exercises, since my nystagmus has returned and my eyes are moving around of their own accord. He said to just keep doing as much as I can to try to return to where I was before disaster struck earlier in the year. And he will see me in twelve months, at which time he will have to discharge me from the clinic, since-he said-he can't keep me on the books indefinitely. He wants to see if I have made any progress in the next year.
I was so discouraged, I went home and went to bed early. I really didn't feel like talking to anyone, or going online-I know it's been over a week, but severe pain and sleep deprivation kept me from doing much-but this setback was really very painful.
So I thought about everything very seriously yesterday. I thought about the surgeries, the illnesses, the setbacks to my balance and vision-and I decided that it is possible that Dr. Dimples is mistaken. I return to everything I have read about neuroplasticity, new neural pathways, the fact that we just don't have enough information about the brain (yet) to make that kind of hard and fast judgment. So I refuse to quit. I have a year to prove Dimples wrong: I have a year to get back to that all important 80%-more, in fact, if I can do it. It just means that I need to stay healthy. No falling down concrete steps and landing knee first!! I have a replaced kneecap now, and I don't want to have to have a brand new knee to go with it. And-there is no reason I can't stay out of hospitals, providing I do everything I can to keep myself healthy. I need to get back to that optimistic mindset-the one where I refuse to give up, because I know I can do it. I just need to do the work-and I have become pretty lazy, I can tell you!!
And then there are those bingo wings. I have to mention those, because they are the scourge of women everywhere-right up there with fat thighs, hips and backside, muffin tops, bra fat, and, of course, the awful turkey neck!! Is this relevant? Of course it is.
When I first got the crutches I said to a couple of nurses (that was when they were still speaking to me) that at least I would be able to get rid of my bingo wings. They laughed and said that the muscles were the wrong ones. Er...well, yes and no. Can I explain? Well, I thought you would never ask.
Bingo wings are the fatty areas between the armpit and the elbow, and just about every woman I know has them. Some are so large that if someone raised both arms together, she would look like a huge bat. And imagine suddenly raising your arm, having a wing fly out and give some poor innocent bystander a black eye. Try explaining that to the paramedics (or police). Errant bingo wing causes facial damage...whatever. So we all cover up, wearing long sleeves to ensure this never happens-and because it looks terrible. I used to see women at the gym, doing tricep dips until their arms nearly dropped off-and when they were done, they still had those bingo wings. And probably something they ruptured, too.
Why, you ask, is this relevant? Duh?? Because I have found a cure,that's why. It isn't surgery (are there things like bingo wing lifts? Probably). Or hours of daily tricep exercises. Or special creams (rip off!!), or pounding or pummeling. The cure is... crutches. That is what I said: crutches. You read it first here, and you got it for free. How good is that??
I have been on crutches for three weeks, and my arms are developing biceps that are finally bigger than a sparrow's kneecaps...make that a sparrow's elbows, kneecaps are a sore point with me (literally!). But all the shlepping around with crutches, and trying to get it the way the physiotherapists told me (crutches down, then bad leg, then good leg, then crutches, etc), and I have noticed that my bingo wings are shrinking. They were never bat-sized, but they are shrinking. And that is due to the crutches, because I'm not doing anything else.
So there you are. Get some crutches-not the old type that sit in your armpit, but the ones with the plastic thingy (a technical term if there ever was one) that goes around the elbow, keeping the crutches from dropping. And walk. A lot. And lift yourself on the crutches. A lot. And say goodbye to bingo wings and long sleeves.
Let me know how it goes. When those wings are gone, you can take me to lunch. Huh. I should write a book, I would make millions.
And by the way: I'm back....
Tuesday, 3 September 2013
oxycodone: drug choice of champions (and me)
Very sorry if you thought I was dead-of course, I'm very glad I'm not dead, but the last two weeks since surgery I thought the pain was going to kill me off.
I went off to surgery two weeks ago (today)-and I just had a sneaky feeling that I wasn't going back to the Newman (private patients) ward. I just had that feeling that I was lied to, just to get me to surgery. And-I was right.
I ended up in Intensive Care for the night-nothing exciting, all surgical patients end up there, so their vital signs can be monitored. I was given oxycodone for the pain-intravenously-and that worked really well. I still felt pain, but I was too sleepy and too out of it to care!!
The next day I was told I was returning to the Angus MacKinnon ward-exactly where I didn't want to go, given the complaints I'd made about the ward, the nurses, the care..so I said no thank you. And the bed manager, Craig, was called in to smooth things over. After about four hours, he came back with an offer: if I would return to MacKinnon, the bathroom would be cleaned, signs put up-and the nurses would see every patient plus visitors to tell them not to use the room because it was reserved for someone who was highly contagious (I love that bit. Would you use a bathroom if that is what you were told? I wouldn't. But read on..).
The nurses didn't pay a blind bit of notice. And this time, they were overtly hostile. After all, I had complained-and named names. So I was told they wouldn't be adhering to this, and that if I wanted a private room I should have gone to a private hospital. I responded by saying that if I got any kind of infection, they would all be held accountable. And I relayed all this to Craig. Happy days.
One nurse offered me a commode (fancy name for bedpan) that I could have in the room; she said they would give me a bowl and I could have a wash that way. I asked if they were going to do this for seven days-I asked what century they were in-and I asked if they were planning on giving me a tent to go with the commode and the bowl-perhaps a camping stove, so I could just move out into the car park? They didn't find that funny, and I let them know I thought they were morons. Not a good way to spend seven days!!
When I got out-finally-on Wednesday night, the nursing sister accompanied the transport ambulance driver -and me- to the exit. I think she wanted to make certain I was really leaving. Nursing sister: that's like a head nurse, but without the pay, the ability, or the brains. Anyway, off I went.
So here I am, and did I put in a formal complaint with everyone of any significance? Come on, is the Pope Catholic? You bet I complained. I think I gave poor Craig an ulcer!
I've continued on the oxycodone since Wednesday-but it doesn't have much of an effect now. So I've been in bed since Wednesday, and I've been too sick and in too much pain to write-or eat-or write nasty emails to anyone!!
But hey, here I am, I'm back....and I'm staying back!! And I still have a lot of the mixed nuts Andy brought me. I can honestly say that I don't want to see another almond, or hazelnut, or brazil nut, or any kind of nut-until Christmas. 2016!
I went off to surgery two weeks ago (today)-and I just had a sneaky feeling that I wasn't going back to the Newman (private patients) ward. I just had that feeling that I was lied to, just to get me to surgery. And-I was right.
I ended up in Intensive Care for the night-nothing exciting, all surgical patients end up there, so their vital signs can be monitored. I was given oxycodone for the pain-intravenously-and that worked really well. I still felt pain, but I was too sleepy and too out of it to care!!
The next day I was told I was returning to the Angus MacKinnon ward-exactly where I didn't want to go, given the complaints I'd made about the ward, the nurses, the care..so I said no thank you. And the bed manager, Craig, was called in to smooth things over. After about four hours, he came back with an offer: if I would return to MacKinnon, the bathroom would be cleaned, signs put up-and the nurses would see every patient plus visitors to tell them not to use the room because it was reserved for someone who was highly contagious (I love that bit. Would you use a bathroom if that is what you were told? I wouldn't. But read on..).
The nurses didn't pay a blind bit of notice. And this time, they were overtly hostile. After all, I had complained-and named names. So I was told they wouldn't be adhering to this, and that if I wanted a private room I should have gone to a private hospital. I responded by saying that if I got any kind of infection, they would all be held accountable. And I relayed all this to Craig. Happy days.
One nurse offered me a commode (fancy name for bedpan) that I could have in the room; she said they would give me a bowl and I could have a wash that way. I asked if they were going to do this for seven days-I asked what century they were in-and I asked if they were planning on giving me a tent to go with the commode and the bowl-perhaps a camping stove, so I could just move out into the car park? They didn't find that funny, and I let them know I thought they were morons. Not a good way to spend seven days!!
When I got out-finally-on Wednesday night, the nursing sister accompanied the transport ambulance driver -and me- to the exit. I think she wanted to make certain I was really leaving. Nursing sister: that's like a head nurse, but without the pay, the ability, or the brains. Anyway, off I went.
So here I am, and did I put in a formal complaint with everyone of any significance? Come on, is the Pope Catholic? You bet I complained. I think I gave poor Craig an ulcer!
I've continued on the oxycodone since Wednesday-but it doesn't have much of an effect now. So I've been in bed since Wednesday, and I've been too sick and in too much pain to write-or eat-or write nasty emails to anyone!!
But hey, here I am, I'm back....and I'm staying back!! And I still have a lot of the mixed nuts Andy brought me. I can honestly say that I don't want to see another almond, or hazelnut, or brazil nut, or any kind of nut-until Christmas. 2016!
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!!
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.
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.
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.
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.
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